End of Life Care JSNA

This page is under construction.

Context

JSNA delivery collaboration between:

Shooting Star Children's Hospices

Princess Alice Hospice

Phyllis Tuckwell Hospice

St Catherine's Hospice

Authors

Nicola Wood, Head of Transformation, Shooting Star Children’s Hospices

Jolanta Golan, Research Fellow and Data Manager, Shooting Star Children’s Hospice

Kimberley Burke, Research Assistant / Clinical Audit Facilitator, Shooting Star Children’s Hospices

Tim Bevan and Katie Davey wrote the carers section and carers recommendations, Chief Executive and Community and Partnerships Manager, Action for Carers

Acknowledgements

Shooting Star Children’s Hospices, Princess Alice Hospice, St Catherine’s and Phyllis Tuckwell Hospice for funding and supporting the JSNA.

Shooting Star Children’s Hospices for leading and authoring the JSNA.

The JSNA Steering Group for providing subject matter expertise, expert review, data and support for the JSNA.

The Shooting Star Children’s Hospices Research team for undertaking thematic analysis of data.

The Surrey Adult Hospices Collaborative, Surrey Child Death Review team, Momentum and Healthwatch Surrey VCSE for undertaking engagement with people with lived experience and service-users.

Woking and Sam Beare Hospice for supporting data collection and review.

Surrey Minority Ethnic Forum (SMEF) for supporting focus groups with people who have experienced bereavement.

Practitioners who have given their expertise and time to undertake interviews and share data as part of writing the JSNA.

Experts by experience reviewers.

Surrey Public Health JSNA team for expert review, programme support, data and data analytics.

The Surrey Child Death Review team for providing data analysis for children and young people who have died.

Surrey and Sussex Integrated Care Board for expert review, supporting data collection and engagement with the JSNA across Surrey.

Glossary of Terms

Foreword

Death and passing affects everybody, of all ages and can be expected or sudden and unexpected. In 2024 there were a total of 568,613 deaths or passing registered in England, with 3577 of these being children under the age of 17. (National Mortality Database (NMD) and National Child Mortality Database (NCMD)) For each death, there is an impact to those who are bereaved, including family, partners and carers. Behind the numbers are individual people with their own needs. With death and passing, we just get one chance to meet those needs and support ‘a good death’.

In this JSNA we will discuss end-of-life care in Surrey for those who have died and passed and their families, loved ones and carers. In England the term ‘end-of-life’ refers to those to be in the last 12 months of life. [1] In this JSNA death and passing will describe all expected and unexpected deaths or passing, with terms chosen to reflect the diversity of beliefs and cultures of the residents and communities across Surrey.

“A good death” or “dying well” was founded as a concept by the hospice movement. Perspectives of what ‘a good death’ represents is individual for the dying person and their family, partner and carers [2]. This JSNA will provide insights into the needs of Surrey’s population and make the case for change as individuals, communities, society, practitioners, services, organisations and across the county and system. As individuals and as a collective, we can take ownership and be part of a change in behaviour, practice, service design and system collaboration. To enable all those who are at end-of-life, those who have died or passed and their families, loved ones and carers, to have what they need to experience “a good death”.

1. Executive Summary

This all-age Joint Strategic Needs Assessment (JSNA) examines the needs of Surrey residents at the end of life, people who have died or passed and their families, carers and loved ones. It combines local population and service data, national and local research and best practice, the voice of people with lived and living experience, surveys, case stories and analysis of more than sixty semi-structured interviews.

Surrey had an estimated 1,248,649 residents and 10,630 deaths in 2024. The population aged 65 and over is projected to increase by 25.1% by 2047, while annual deaths are expected to rise by 25% by 2040. Across Surrey, 39% of deaths occurred in hospital and 57% in community settings: 27% in care-homes, 25% at home and 5% in hospices. More people will live longer with multiple health conditions, increasing the need for coordinated, flexible care across home, care-home, hospice, community and hospital settings. Care is increasingly shifting from hospital to community settings, with people preferring to die at home, care-home or hospice. Children and young people need a distinct approach, with the majority dying in infancy and within the first 27 days of life.

Health inequalities affect life years lost and quality of life and death. Asian residents comprise 8% of Surrey’s population but 17% of child deaths, while Black residents comprise 2% of the population but 8.7% of child deaths. People with learning disabilities are three times more likely to die from an avoidable cause, and people experiencing homelessness die around 30 years earlier than the general population.

The findings show substantial exemplar compassionate and innovative practice, but also a system under increasing pressure from rising complexity, workforce constraints, fragmented pathways, with variation in commissioning as a contributary factor.

Strategic priorities

1. Plan for future need: develop a Surrey-wide 10–15-year demand, capacity, workforce and financial plan aligned to projected place of care and death.

2. Shift resources closer to home: strengthen hospice-at-home, community and specialist nursing, social care, care-home support, rapid response, out-of-hours provision and reliable access to medicines.

3. Create an integrated, sustainable system: clarify pathways; align commissioning and outcomes; improve digital information sharing; and hospices, communities and VCSE organisations as strategic partners and co-investors.

4. Reduce inequity: improve recording and analysis health inequalities; use co-production, outreach and community connectors; and embed culturally competent, trauma-informed and accessible practice.

5. Support carers: routinely identify and assess unpaid carers, involve them in planning, provide practical and emotional support, and ensure help continues after bereavement.

6. Invest in the workforce: expand specialist and advanced-practice capability, strengthen prescribing competence, support care-home staff and provide consistent supervision and psychological support.

7. Provide age-appropriate pathways: secure sustainable specialist perinatal and paediatric provision and coordinated transition arrangements for young adults.

8. Build a compassionate, death-literate Surrey: adopt a public-health approach involving communities, councils, education, employers, faith groups, health and care services, hospices and the VCSE sector.

A coordinated shift is required towards prevention, earlier planning, equitable access and sustainable community-based provision to improve quality of life and death. Delivery should be effectively planned trough capacity and demand analysis and monitored through working with communities, population health all-age dataset and outcomes that measure equity of access, experience, health and wellbeing outcomes, carer wellbeing and achievement enablers such as advanced care planning.

2. Background

2.1. Aim of the Joint Strategic Needs Assessment (JSNA)

A Joint Strategic Needs Assessment (JSNA) is a statutory document that evaluates the current and future health and social care needs of the population in relation to a specific area. The primary aim of this JSNA chapter is to represent the holistic needs of our Surrey residents at end-of-life, death or passing and their family, carers, spouse/partner and loved ones. Making recommendations for change across all sectors, including the role society has as part of ‘a good death’ and passing.

The JSNA will achieve the following:

• Describe Surreys population data of deaths and passing

• Reflect the diverse needs of Surrey’s population at end-of-life

• Define the current state of end-of-life care services and support for the population of Surrey

• Explore unmet need and where there are barriers or challenges to meeting the needs of Surrey’s population at end-of-life, death or passing

• Outline changes, recommendations and priorities to enable “a good death” for people in Surrey at end-of-life, death or passing.

For commissioners, the JSNA data, insights and recommendations will enable a population-health needs-based approach as part of decision making and evidence-based commissioning, as outlined in the NHS England Strategic Commissioning Framework.[3]

The JSNA will serve as a resource for continual quality improvement for services and development of organisational culture within organisations.[150]

The JSNA will provide resources and insights for continual professional development and evidence-based practice for practitioners, to enable compassionate and professional curiosity.[4]

The unifying purpose and questions for the JSNA to define are:

• What is a good death to the people of Surrey?

• What contributes to a good quality of death?

2.2. Methodology and scope

A mixed-methods approach was taken utilising both qualitative, quantitative and secondary data and co-design with subject matter experts by experience. A stakeholder analysis was completed to ensure representation from across sectors and services within the Surrey system. A quality equality impact assessment has been undertaken to ensure representation of people with protected characteristics and inclusion health groups. The COVID-19 pandemic resulted in excess mortality within the UK, with the death or passing rate continuing to be higher pre pandemic.[5] Therefore, to maximise accuracy and comparability, data for the period from 1 April 2023 until 31 March 2025 has been used. Data collection included a literature search, semi structured interviews, focus group discussions, public-facing surveys, service-user forums, case stories, service-user feedback and desktop data review. Over 60 semi-structured interviews were undertaken, with data anonymised and thematic analysis undertaken by the Shooting Star Children’s Hospices Research team. The final draft has been reviewed by key stakeholders, the multi sector project steering group, subject matter experts and experts by experience.

Any direct quotes and case studies will be anonymised using the individuals allocated unique number, or identifiable where consent has been given.

The JSNA scope represents the needs of people of all ages resident in Surrey who have life-limited or life-threatening health conditions and are currently receiving end-of-life care and those who have died or passed, both expectedly and suddenly and unexpectedly. [6] This includes those who have died or passed from sudden traumatic death such as suicide and homicide. The JSNA represents the needs of family, partners and carers of those at end-of-life and those who have been bereaved.

The JSNA does not include early pregnancy loss, late pregnancy loss and stillbirth. We acknowledge the needs and experiences of those who have experienced pregnancy loss and stillbirth need to be heard and recognised. The JSNA authors and steering group have recommended that this area of need be undertaken as a chapter in its own right, to support the need for trauma informed gathering of insights and data in co-production with the residents of Surrey.

2.3. What is end-of-life care?

In 2024, Marie Curie published Public Attitudes to Death and Dying in the UK, exploring what truly matters to people as they approach the end-of-life. [7] When asked the question, “What matters most?”, the responses highlighted the following as being important to people at end-of-life:

• We need a better public discourse around dying, death and bereavement.

• We need to listen closely to people about their own end-of-life preferences and recognise that these will differ from person to person and may change over time.

• We need to treat end-of-life care as just as much of a priority as care and support at any other phase of people’s lives.

These videos show what end-of-life care means to life-limited people, families and practitioners.

Shooting Star Children’s Hospices A Little Light - Dylan James' story [133]

NHS End of Life Care

Phyllis Tuckwell Hospice Pete's Story [131]

Marie Curie and Terence Higgins Trust Planning for the end of your life while living with HIV

NHS Kings College London End-of-Life Conversations: an animated short film | King's College London

Any videos are shared to provide information. Reference to fundraising does not imply the Surrey JSNA and Health and Wellbeing Board is endorsing or advocating for specific organisations.

The below figure from the Lancet Commission on the Value of Death[8] illustrates the end-of-life system, capturing the complexity, non-linearity and dynamic nature of end-of-life. A map of the whole death system, including preventing death and customs after death, would include much more complexity.

NHS health guidance discusses end-of-life care it should enable people to have quality of life until death or passing and to die with dignity. NHS guidance states that people providing care should ask the persons preferences and wishes and take these into account when planning care and support. This should also involve and support family, carers and loved ones. Care can be delivered in a hospice, care-home, nursing home, hospital and in the home and community, supported by a range of health services, community nurses, clinical nurse specialists, therapists, complementary therapists, mental health practitioners, general practitioners (GPs), charities, faith groups and social care. Education, early years settings and the workplace also have an important part in the supporting people with life-limiting and life-threatening conditions. Care should be delivered in the most appropriate place and services, depending on the needs of the person.[9]

3. Local context for end-of-life

To give context to the Surrey mortality data, the Health Foundation report gives an insight into national mortality trends. UK mortality trends show a slowing of mortality rates between 1910 and 2023 for both males and females, with the majority of the improvement achieved prior to 2010. Between 2011 and 2019 the improvement slowed, with an increase in 2020 due to the pandemic. Data suggests that as of 2024 mortality rates may now have returned to pre-pandemic levels. However, the UK slowdown of mortality since 2010 compares poorly with international peers. The Health Foundation discusses the strong link between living standards and health as a causal factor, with the UK having experienced a period of falling living standards, alongside continued pressure and cuts to funding for health services, public health and social care.[10]

As of 2024 there were estimated to be 1,248, 649 residents in Surrey and 10,630 recorded deaths.[11] As with the national picture, deaths or passing post pandemic remained elevated, with Office for National Statistics (ONS) data showing mortality rates had not returned to 2010 levels by 2021. This was partially due to the impact of the pandemic on health services. Surrey has an increasing aging population, which is likely to result in a gradual increase in annual deaths or passing over time.[12]

Surrey Public Health data shows that residents of Surrey have a longer life expectancy that people in the southeast and England as a whole. In line with the national picture, the improvement in life expectancy before 2010 has slowed. There are inequalities in life expectancy in Surrey, many of which are preventable. Inequalities exist related to age, ethnicity, disability and social exclusion.[12] Analysis of deaths or passing in Surrey between 2023 and 2025 shows a slight upward trend over the two-year period, with the highest numbers consistently recorded in December and January. Analysis of health and wellbeing in Surrey discusses health outcomes and causal factors of poor health and impact on life term.[13]

Future projections for Surrey show the age profile is expected to shift to a more aging population with residents aged 65 and over increasing by 25.1% by 2047. Conversely, the proportion of resident children under 16 years is expected to decline by 15.2%. By 2027 the largest five-year age band will be residents aged 45-49 for males and 50-54 for females. It is predicted that by 2040, 25% more people will die each year. As people live longer, they will become more likely to develop multiple health conditions, making their care requirements even more complex. The Health Foundation predicts people spending 12.6 years with major illness in 2040 compared to 11.2 years in 2019.[14]

A more aging population will represent a challenge for palliative and end-of-life care (PEoLC) and the supporting capacity of resources (e.g. bed occupancy across sectors, staffing) to meet the numbers of deaths and preferred place of death, given that the qualitative data and insights of children, young people and adults in Surrey indicates the preference for place of death being in the home or hospice. National research reports recent trends of increased deaths at home and within care-homes, with hospice deaths increasing for a small minority. The proportion of hospital deaths declined nationally, with the majority of people no longer dying in hospital. This can be seen from the Surrey data presented below, where deaths within care-homes, home and hospices outnumber hospital deaths.

Future projections using national past 11-year average change shows increasing home, care-home and hospice deaths and decreasing hospital deaths. Research discussed that by 2040, 68.8% of all deaths will occur in a care-home or at home, with about a third in each care setting. Hospice deaths are projected to increase to 7.3% of deaths. While hospices would remain the place of death for a minority, care-homes and home would become more common settings for death than hospital, which is expected to decline to 22.4% of all deaths.[15]

National reports for Surrey local hospital general and acute bed occupancy in Quarter 4 of 2025/26 show RSCH at 95% bed occupancy, ASPH at 92% bed occupancy and SASH at 93.4% bed occupancy for general and acute wards.[16] Bed occupancy pressures have been highlighted nationally, with reported higher rates of bed occupancy 85% and above and pressures on social care and care-homes.[17] Hospices are also facing pressures related to funding for staffing capacity to maintain full occupancy. As discussed later in the JSNA, hospices in Surrey are currently running below maximum occupancy, due to financial pressures in not being able to fully staff beds to meet the complexity of patients.

There needs to be further local capacity/demand and health economic analysis of how increased deaths within care-homes, home and hospices will be supported and how this can be created. Hospitals and care-homes are operating at capacity, care in the community operating at or above capacity (see JSNA service descriptions and thematic analysis) and hospices currently operating below bed capacity, but at full financial capacity. The ‘Ten Year Plan’ left shift of resource needs to be mapped against where deaths and care will occur in the future and what plans need to be made within the health system to enable quality of death, in the preferred place, within the constraints of system resource and financial capacity.

In 2018 it was estimated that 86,000 children (0-19 years) lived with a life-limiting condition in England, research has shown that this number is increasing. [18] The prevalence of children with life-limiting conditions rose from 32,975 (26.7 per 10,000 children) in 2001/ 02 to 86,625 (66.4 per 10,000 children) in 2017/ 18. with child mortality also increasing from 10 per 100,000 in 2019 to 2021, to 10.4 per 100,000 in 2020 to 2022. Prevalence in the UK rose across all ethnic groups, but children of Pakistani origin had the highest proportion of lie-limiting conditions. Children from black and other Asian groups also had a higher prevalence than white population. It is predicted that there will be between 67.0 and 84.2 per 10,000 children with a life-limiting condition in England by 2030. [123] [117]

3.1 End-of Life-Care in Surrey over the life course

This section will take a life-course approach discussing deaths or passing in Surrey analysed by age, geographical place and location of death, cause of death and further analysed by people experiencing health inequalities, including people with protected characteristics, inclusion health groups and consideration of social determinants of health. Where data is not represented for any groups with protected characteristics, inclusion health groups, or social determinants of health, this is due to sufficient data not being available and is not an indication that those who have been omitted do not have needs at end-of-life, or experience of health inequalities.

The sections will give an overview of services and support providing end-of-life care across Surrey. To support understanding of health provision at end-of-life, the below image gives an overview of levels of provision for palliative and end-of-life care, interventions and outcomes, as defined by the Ambitions for PEoLC by NHS England.[20]

3.1.1 Perinatal (pregnancy to age 2), children and young people data of deaths or passing

In the UK an annual total of 26,900 parents of dependent children die or pass, averaging one parental death every 20 minutes. With one in twenty-nine 5- to 16-year-olds having been bereaved of a parent or sibling.[21] In 2021 to 2023, 257 women died in the UK during or up to six weeks following pregnancy, among 2,004,184 women and birthing people. This represents a maternal death rate of 12.82 women and birthing people per 100,000. MBRRACE-UK Maternal Report 2025 - Main v1.4.pdf In 2022 there were 11, 740 births in Surrey.[22] Statistically this would equate to 1.5 maternal deaths or passing within the year.

Maternal suicides remain the leading cause of death occurring between six months and one year after the end of pregnancy. As a whole, deaths or passing from psychiatric causes accounted for 33% of maternal deaths or passing in 2022 – 2024.[23] Surrey maternal deaths or passing have similar causal factors, including neurological, suicide and type 2 and gestational diabetes.[24]

Causal factors are varied, with many women and birthing people facing interrelated challenges and multiple disadvantage. Maternal mortality is increased by health conditions that pre-date pregnancy and those that arise during pregnancy. The Maternal Medicine Network highlighted type 2 and gestational diabetes and epilepsy within the top contributary factors for maternal mortality and/or poor birth outcomes for babies in Surrey.[25]

In the UK there is an estimated rate of child deaths or passing of 28.7 per 100,000 children (2025 estimates), with the southeast of England having the second lowest estimated child death rate per 100,000 compared to other regions. The number of deaths or passing decreased 2% compared to 2024 but remained higher than pre- 2019/20. In the UK, deaths or passing of children aged under 1 year accounted for a higher number of deaths or passing than children aged 1 to 17 years of age.[26] The mortality rate of children younger than 5 in the UK in 2019, was the second highest among the 23 countries in Western Europe.[27]

Between April 2023 and March 2025, 104 babies, children and young people died in Surrey, the cause of death does not vary significantly. Perinatal/neonatal events are a significant proportion of deaths or passing, with deaths or passing within the first 27 days of life being the highest percentage of deaths or passing within this group. This is a trend that is consistent within national data.

The Surrey Child Death Review Partnership four-year Report of deaths or passing between 2018 and 2022 found smoking to be the single most important modifiable risk factor in prevention of poor pregnancy outcomes at birth and sudden unexpected death in infancy. The report found there to have been 15670 years of life lost from premature mortality.

Chromosomal, genetic or congenital anomaly where the second most common cause of death (other than ‘other’), with death occurring primarily within the first year of life. The below table gives a breakdown of causes of death by age from 2018 - 2022.

Table 1: Common cause of death by age group 0 to 17 years

Further evaluation of sudden and unexpected death in infancy and suicide can be found in the Child Death Partnership thematic reviews.[28][29][30]

While deaths or passing in children are no longer classified as expected or unexpected, it is helpful to see the numbers requiring a Joint Agency Response (JAR). A JAR is a coordinated multi-agency response by the named nurse, police, social worker and is triggered if the child dies and the death:

• could be or is due to external causes

• is sudden and there is no immediate known cause

• occurs in custody, including if detained under the Mental Health Act

• where the circumstance raises suspicions that the death may not be of natural causes

• where a stillbirth occurs without a health professional in attendance.

Table 2: Child deaths or passing by expectancy 2018 - 2022

According to data provided by the Child Death Review team and National Child Mortality Database (NCMD) for children residing in Surrey, who died between April 2023 to March 2025, the place where the highest proportion of deaths or passing occurred is the neonatal unit of hospital, which aligns with the highest proportion of deaths or passing occurring in the neonatal age group (0-27 days).

There is significant difference in place of death for children between neonatal units and public places, and between neonatal units and other/unclassified places. Deaths or passing in neonatal units in hospital being the place of death for 24.0% (twenty-five children), while 5.8% of deaths or passing (six children) took place in public places and 7.7% of deaths or passing (eight children) in other places.

Excluding neonatal unit or maternity unit deaths or passing, the largest percentage of child deaths or passing occur in Hospital – other, which would include emergency departments. For children with life-limiting conditions, the larger proportion of deaths or passing occurring at home and then the hospice follows the pattern of evidence provided by parents and carers.

The data below gives details of place of death for infants, children and young people. Hospital other refers to emergency department, theatre, adult intensive care unit and midwifery unit. The deaths or passing in these ‘Hospital’ categories have been combined due to low numbers.

Surrey had the lowest level of neonatal and infant mortality rate per 1000 infants in England (compared to other ICB’s as of 2025) when averaged between 2020 and 2025 and is consistently lower than the average for England. For child deaths or passing, Surrey has the second lowest rate per 100,000 population in England (compared to other ICB’s as of 2025).

3.1.2 Current state of End-of-life care services and provision for perinatal, children and young people

Babies with life-limiting conditions will be identified in utero or following birth by the maternity or neonatal services, which are located at Royal Surrey County Hospital (RSCH) (level 1 Special Care Baby Unit (SCBU)), Ashford St Peter’s Hospital (ASPH) (level 3 Neonatal Intensive Care Unit (NICU)), Epsom Hospital (level 2 NICU), Frimley Park Hospital (level 2 NICU) and East Surrey Hospital (level 2 NICU). The maternity or neonatal unit provide support up to 28 days after birth if additional care is required. The maternity or neonatal service will liaise with specialists, including external services, where required to support the infant if they are likely to die or pass on the unit (Maternity services in Surrey | Healthy Surrey).[114]

The Shooting Star Children’s Hospices (SSCH) perinatal team provide in-reach into Ashford St Peter’s Hospital NICU providing a Perinatal Palliative Clinical Nurse Specialist (CNS) and Family Support Worker. Working alongside the neonatal and obstetric teams while the baby is in utero and following birth, providing planning for compassionate care, management of symptoms and supporting families including peer support groups on the unit, linking into the wider hospice provision and Shooting Star Children’s Hospice Specialist Paediatric Palliative Care Team (SPACE) (Bridging the gap in perinatal palliative care – Shooting Star Children’s Hospices). [134] As a result of neonatal in-reach by Shooting Star Children’s Hospice perinatal team the number of symptom management plans increased and referral age decreased, indicating improved partnership and integration at point of diagnosis and end-of-life. The service is being used as a benchmark in establishing standardised practice across London and the southeast.

Children and young people with non-oncology life-limited conditions will have their care managed by their general practitioner (GP). During semi-structured interviews, GPs described that a GP would have very few children and young people in their care within their career who will receive end-of-life care. GPs support these cases with prescribing, referrals and case management, but rely on specialist services to manage and provide interventions for children and young people at end-of-life. Children with complex health conditions will usually be under the care of a developmental paediatrician. Development Paediatrician services provided by Royal Surrey County Hospital (5 years old and under) to residents of Guildford and Waverley, HCRG (0 to 19 years of age) who provide care Surrey wide (excluding children under 5 years who are resident in Guildford and Waverley and children 0-19 years of age resident in the boroughs of Mole Valley, Epsom and Ewell, Reigate and Banstead) and Epsom Hospital (providing care in the Surrey Downs area). Children and young people with life-limited conditions or conditions which may result in sudden and unexpected death will be under the care of acute paediatric services based at RSCH, ASPH, East Surrey Hospital and Epsom Hospital including epilepsy, asthma, diabetes and cardiology. Children will also be under the care of tertiary care services, including the Evelina, Great Ormond Street and St George’s. These services and professionals do not have expertise in PEoLC and rely on tertiary and specialist services, including Shooting Star Children’s Hospice, to manage PEoLC and provide interventions.

At end-of-life for children and young people with non-oncology needs, Community Childrens Nursing (CCN) teams provided by HCRG (Surrey wide excluding Surrey Downs) (surreychildandfamily.co.uk) and Epsom Hospital (Surrey Downs) Children’s community home care teams support children to remain at home | Epsom and St Helier University Hospitals [107] providing core universal PEoLC nursing services, which are funded by the ICB. The HCRG CCN team has two bases, primarily located in Guildford with a smaller team located in Redhill, providing services 8am to 6pm, Monday to Friday and shorter days on Saturday and Sunday. Out-of-hours provision is conducted as a two person visit with one senior nurse in attendance, supported by the Shooting Star Children’s Hospice CCN team, which is charitably funded. The Shooting Star Children’s Hospice CCN team provide senior PEoLC CCN’s, due to the limitations in capacity of senior PEoLC trained CCN’s within the HCRG team, also manage the risk and impact to the HRCG CCN service should two members of staff be on call out-of-hours and require time of in lieu the following day, which would impact core nursing service provision. The level of service provision at end-of-life is guided by the child or young person’s PEoLC team. There is good practice in joint working between HRCG CCN and SSCH CCN teams in providing collaborative care for children and young people, with SSCH CCN providing targeted PEoLC support and linking in with the SPACE team if required for specialist PEoLC. The Epsom CCN teams include a targeted oncology CCN offer, alongside universal CCN care, providing services between 8am to 5.30pm Monday to Friday. There is variability of offer and hours/days of provision between the two services, leading to inequity of provision for Children’s Community Nursing across Surrey.

Shooting Star Children’s Hospices (SSCH) Community Children’s Nursing (CCN) team is funded fully by charitable funding, support both Community Nursing Teams Surrey wide, providing targeted end-of-life care within the home and as in-reach into Surrey hospitals and tertiary centres. This video explains more about the services SSCH Community Nursing Service provide (https://youtu.be/9tVdLE_C9UY). [132] The team of community nurses assess the nursing needs of children referred to the service and provide emotional and practical support and nursing care to families in their own homes during the last six months of a child’s life. Working in partnership providing complex medical care where Community Nursing Services may not have capacity, confidence or competence in undertaking specific tasks which are part of the targeted SSCH CCN provision (Services we provide – Shooting Star Children’s Hospices). [137]

The SSCH CCN team provide and on-call 24-hour service, offering care in the home at end-of-life and where targeted PEoLC CCN provision is required. The SSCH CCN team is commissioned (ICB funded) to provide out-of-hours care in the Surrey Downs area for children and young people at end-of-life and support HRCG Children’s Community Nursing team with out-of-hours provision. The Community Children’s Nursing HCRG, Epsom Hospital and SSCH teams support children and young people to die at home, where it is medically and socially safe to do so and is their preferred place of death.

The SPACE service is commissioned (statutory funded) to provide non-oncology specialist paediatric palliative care, led by Level 4 Paediatric Palliative Care Consultants, a Nurse Consultant and a multi-disciplinary team including a pharmacist and Clinical Nurse Specialists. The SPACE team provides symptom management, advanced care planning and provides specialist care at end-of-life in the community, in-house within Shooting Star Children’s Hospice and as in-reach into Surrey hospitals and tertiary centres. The SPACE team manages and provides specialist PEoLC clinical care for SSCH inpatient symptom management stays, where the team can trial new medications and monitor the effects of these to improve a child's symptoms in a clinically controlled safe environment, thus preventing admission to hospital and providing specialist paediatric PEoLC care that is not available in Surrey’s District General Hospitals. Enabling children to return home with symptoms better controlled (Discover our SPACE team – Shooting Star Children’s Hospices). [135]

For children and young people with oncology (cancer) diagnosis, the Principal Treatment Centres (PTC) are located at the Royal Marsden and Great Ormond Street Hospital, with children and young people under Frimley Park Hospital accessing Southampton hospital PTC. The Royal Marsden PTC is due to move to the Evelina hospital in 2027. Details of the duties of the PTC’s can be found here 1746-principal-treatment-centres-service-specification-.pdf. [118] PTCs are commissioned regionally under Specialised Commissioning, with Surrey falling under southeast regional Specialised Commissioning. The PTC provides end-of-life care, supporting care outside of the specialist centres through shared care services and liaising with local palliative care services. The PTC directs treatment, with some palliative care services provided within Paediatric Oncology Shared Care Units (POSCUs). In Surrey, POSCUs are located at RSCH, ASPH, Frimley Park Hospital and East Surrey Hospital. All are Level A Enhanced PSOCU’s, however there is a glide path in place which the units are working through to achieve full operating compliance. Frimley Park, RSCH and ASPH are due to achieve full compliance by October 2026, with East Surrey under Surrey and Sussex Healthcare Trust currently operating at Standard level, with their being expected to achieve Level A Enhanced at a future date. Both RSCH and Epsom have access to oncology CCN teams. The POSCUs in Surrey link into SSCH for hospice care, the oncology and CCN teams and the PTC’s for end-of-life care. The district general hospitals do not have paediatric PEoLC teams.

The SPACE team works in partnership to provide the Paediatric Patient Advice by Telephone (PATCH) out-of-hours telephone advice service. The PATCH service is a 24/7 specialist telephone advice service for children and their families, providing telephone advice or escalating to local services to provide in-person clinical support. The PATCH service will contact the local out-of-hours on call team, HRCG and/or SSCH, to provide end-of-life care in the home for children and young people out-of-hours. This enables children and young people to remain at home at end-of-life 24/7, 365 days of the year, where it is medically and socially safe to do so (Outreach, Symptom and Palliative Care Service | The Royal Marsden). [152]

The Surrey Child Death Review service provides nurse-led, seven-day service which is nationally recognised as a model of best practice. The Child Death Review (CDR) process is a statutory requirement under the Children Act 2004 and Working Together to Safeguard Children (2023). Every child death under the age of 18 must be investigated and reviewed to understand how and why the child died and to identify any learning that could prevent future deaths or passing. The findings of each case are submitted to the National Child Mortality Database (NCMD) to inform local and national learning.

The CDR process begins at the moment of the child’s death. Immediate coordination, safeguarding consideration and family support are therefore core statutory elements which are carried out in Surrey by the Surrey Child Death Review Partnership for all child deaths or passing, including those requiring a Joint Agency Response (JAR).

The Surrey CDR Team is responsible for providing both the role of ‘key worker’ and ‘lead health professional’ as outlined within the Child Death Review: Statutory and Operational Guidance (2018). The processes that follow the death of a child are complex, in particular when multiple investigations are required. Recognising this, all bereaved families should be given a single, named point of contact to whom they can turn for information on the CDR process, and who can signpost them to sources of support. The role of keyworker is undertaken by the Specialist Nurse for Child Death Reviews. All families in Surrey are allocated a Specialist CDR Nurse who fulfils the role of keyworker (Child Deaths or passing – Surrey Safeguarding Children Partnership).[148]

The Child Death Review Statutory and Operational Guidance (2018) confirms that a senior nurse may act as Lead Health Professional for deaths or passing requiring a JAR (see section 3.9.1 for further details regarding JAR).

The Surrey model ensures that when a child dies unexpectedly:

• a CDR Nurse attends the home or emergency department to support the family and begin the JAR immediately

• information is gathered rapidly from police, health and social care to assess risk to siblings and others

• communication is coordinated across education, public health, safeguarding and primary care

• families do not face the early hours of bereavement without skilled emotional and practical support

• the model ensures high standards, avoids variation, and provides strong leadership across complex cases.

Surrey Child Death Review team regularly publish thematic reviews and reports on responding to and preventing child deaths or passing (Child Deaths or passing - Surrey Safeguarding Children Partnership).

The Surrey Child Death Review team provision is under review at time of publishing in 2026 and is likely to change.

For Epsom Hospital commissioning falls under Southwest London ICB as lead commissioner. CDR nurses are hospital based, offering support to families whose child or young person has died within the hospital and overseeing deaths within the community.

Hospices provide care which is free at the point of use. Unlike in the NHS, it is not fully state funded. While hospices receive some government funding, more than £1.3 billion of the £1.8 billion they need each year comes from donations. (What we do | Hospice UK). See the appendices for further data regarding hospices in Surrey.

Shooting Star Childrens Hospices is the only hospice for babies, children and young people serving Surrey. The hospice is open 24-hours a day, 365 days of the year with two locations, Christopher’s in Artington and Shooting Star House in Hampton. Shooting Star Children’s Hospices receive 29% of their funding from statutory sources each year, with the remaining 71% through voluntary donations and fundraising.

Inpatient overnight care is located at Christopher’s six bed unit, for end-of-life, symptom stays and respite, supported by Clinical Nurse Specialists, nurses, PEoLC Consultants and in-reach from GP with a specialist interest (GPwSI) in PEoLC. Children and young people are able to access the wider hospice multi-disciplinary team during their stay, with the SPACE team able to support with specialist symptom management if required. The hospices have an in-house research team, participating in national multi-centre clinical trials and leading in-house research and audit.

The hospices have a multi-disciplinary team offering family support and therapies, including physiotherapy, psychosocial support (including music and art therapy), counselling, complementary therapies, social workers and family support workers. The Psychosocial team have psychotherapists and counsellors who can support one to one and group sessions with the child and their family. The family support workers provide emotional, wellbeing and practical support for families.

The hospices have resources to support both physical and emotional wellbeing. At both Christopher’s and Shooting Star House, physiotherapists provide hydrotherapy sessions which promote physical benefits such as helping muscle tone and strength. Sensory rooms support sensory integration and therapeutic support. Both the hydrotherapy and sensory rooms can be combined with music therapy, to support a full sensory experience for the child and their family. Arts therapy and play can be supported in the arts rooms and adapted play gardens. Family flats and relaxation dens, enable the whole family to stay with the baby, child or young person at end-of-life. The Willow Suites which have cold beds, is a dedicated area at the hospice where a child can lay at rest, allowing their family to say goodbye in a supportive environment (Shooting Star Children’s Hospices). [138] Watch this video to see the breadth of services available Take a tour of Christopher’s Children’s Hospice. [139]

Education and early years settings are able to access support and guidance from Surrey County Council Education and Early Years teams in how to support children with life-limiting conditions and those at end-of-life. For early-years settings and practitioners, there is clear guidance on the differing thresholds of need and what support can be put in place (Early Years Graduated Response Document 2025). [153] The Early Years team within Surrey County Council works with children and families to access settings and to fund any additional-needs support that may be required, including training of practitioners within settings to meet the child’s needs. There is guidance for schools in response to sudden deaths or passing, which would be classed as a critical incident (Critical Incident Support | Surrey Education Services). [158]

Statutory guidance by the Department of Education requires pupils with a medical condition to be properly supported to enable full access to education (UK Government, 2026c). From the semi-structured interviews undertaken, it was reported there are difficulties in accessing training to support with health conditions for staff within schools and early-years settings. Some hospital secondary-care services, such as diabetes services, provide training for school and early-years settings staff. However, this is not the case for all long-term conditions, school nurses are not commissioned to provide care and support for all long-term conditions. Surrey Healthy Schools (Surrey Healthy Schools | Healthy Surrey) [115] provides guidance and education for schools in Surrey in supporting children with life-limiting conditions. Where children require support for additional needs, schools have a designated teacher to offer support for the pupils needs. Funding for support can be requested through an Education, Health and Care support plan (Additional Needs and Disability Policies and strategy documents – Surrey County Council). [157] The 2023 report by the CQC and Ofsted outlines areas of good practice and improvement for Surrey’s provision for children with additional needs and disabilities (Local Area SEND Inspection outcome – Surrey County Council). [152]

For children and young people who are too unwell to attend school, Virtual School provision can be supported, or reasonable adjustments made to enable attendance at school such as flexible school hours. This would be in discussion with the child or young person’s carers and social workers and would be bespoke to their needs.

Care transitions: the age range for transition varies from 16 to 18 for some hospital based secondary-care services, 19 for community services, 21 for SSCH and 25 for people with special education needs and disabilities (SEND). The variance in transition age can result in there being gaps between paediatric and adult services, with paediatric services stopping at 16 and adult services starting at 18. This is a known issue for some services for the same long-term condition, such as epilepsy, which are located within the same hospital and either do not have an adult service to take on care, or a two-year gap between 16 and 18 years of age in service provision. The gap in service provision for epilepsy was highlighted as a modifiable factor by the Child Death Overview Panel. For hospice care, the transition process starts where possible at 14 years of age, with a needs-led approach. [32] For some young people it is more appropriate to transition care to an adult hospice by the age of 18, where they may be likely to die or pass in young adulthood. Transition is co-ordinated by an MDT across hospices in Surrey, linking into health and social care partners, with regular transition meetings to review and agree case management. Issues arise with young people with non-oncology conditions in young adulthood, where developmental paediatricians or secondary-care services are unable to transition to a commissioned adult service. Care is then transferred for management by the persons GP, who may not have a specialist interest in the health condition and associated complex needs. This includes children with cerebral palsy, some of whom may be life-limited, as service criteria for adult neurology is sometimes limited to people with conditions that have been acquired in later life. This can cause issues with management of care at end-of-life at transition age, with some services extending the age of care to support at end-of-life, with others having a distinct cut off in service provision, resulting in services which are new to the young person taking over care at end-of-life.

3.1.3 Adult’s data of deaths or passing

According to data provided by Surrey County Council Public Health team dementia and Alzheimer’s disease were the leading causes of death for Surrey residents in 2023 to 2025. In 2023 to 2025, there were excess deaths or passing in the following grouped causes:

• Dementia and Alzheimer’s disease

• Symptoms, signs and ill-defined conditions

• Malignant neoplasms stated or presumed to be primary of lymphoid, haematopoietic and related tissue.

• Heart failure and complications and ill-defined heart disease

Symptoms, signs and ill-defined conditions was the only grouped cause of death that had a significantly higher mortality rate in 2023 to 2025 compared to the five-year average. This includes people where a specific diagnosis cannot be made, such as old age or frailty.

The data in the below table has been adjusted using age-standardisation mortality rates (ASMR), which controls population differences between age groups and adjusts for the causes of death which are strongly age related.

Surrey Heartlands ICB data (now Surrey and Sussex ICB) further breaks down cause of death by Place, with Surrey Downs having the highest number of Alzheimer’s deaths and northwest Surrey having the highest number of deaths related to heart diseases. For place of death, the highest number of Alzheimer’s deaths were in care-homes, with heart diseases not conclusive due to the high number of unknown.

Data from Surrey County Council Public Health team shows that a significantly higher proportion of adults died in hospital, while a significantly lower proportion died in hospices. Qualitative insights from semi-structured interviews with clinicians demonstrate that this does not correspond with preferred place of death. The total percentage and number of people who die in a care-home or home are both greater than those who die in hospital. From qualitative insights in semi-structured interviews, home (including care-homes) is often the persons preferred place of death (PPD).

Looking at the proportion of local authority resident deaths or passing by place of death during the two-year period (April 2025 to March 2025), we can see there is variation within Surrey. Surrey Heath has the lowest proportion of their residents dying in hospital (31.7%) compared to other local authorities in Surrey and the largest proportion dying in care-homes (38.1%). Spelthorne as the highest proportion of their residents dying in hospital (46.0%) compared to the rest of Surrey and the lowest proportion dying in care-homes (18.1%). Out of the Surrey local authority areas, Woking has the highest proportion of its residents dying in hospices (11.2%), followed by Runnymede (9.2%).

3.1.4 Current state of end-of-life care services and provision for adults

Adults with a life-limiting condition will be managed by their General Practitioner (GP). Some GPs have a specialist interest in PEoLC having undertaken further training in managing people at end-of-life. GPs work with local district nursing and hospices to provide end-of-life care for patients at home or in care-homes. GP roles include but are not limited to face-to-face, telephone and home visits, prescriptions of end-of-life medication, discussions about advanced care planning, preferred place of care, preferred place of death, writing of ReSPECT forms, certifying deaths when there is not another suitably trained professional to do this, liaising with the medical examiner and their office, leasing with the coroner and their office, issuing death certificates and supporting families who are also registered patients after someone has died. Many GPs are able to access electronic patient records for district nursing teams and in some cases hospices, to support coordination and continuity of care and avoid unnecessary/unwanted hospital admissions. GPs discussed that capacity is often overstretched, with work undertaken outside of paid hours to ensure care and support is in place for families. As with CYP, GPs discussed that some clinicians are still afraid of talking about death and potentially upsetting patients/families. Primary Care General Practice services use the Gold Standards Framework to identify needs and preferences for end-of-life care; this is linked into GP Quality Outcomes Framework (Transformational Primary Care Training - GSF Accreditation). [110] The majority of GPs in Surrey use Arden’s clinical decision support and population health management tool to identify people who may be at end-of-life, to support care management. In Surrey Heath the John Hopkins clinical decision support and population health management tool is used to identify people at end-of-life. As with CYP, adults are also likely to be under the care of secondary-care teams providing support for long-term conditions, some of which may be life-limiting, located within District General Hospitals (DgH) RSCH, ASPH, Frimley Park Hospital, East Surrey hospital or Epsom Hospital or tertiary services based in London or the southeast region.

Adult District Nursing (DN) community teams provide core PEoLC services to people who are life-limited. Royal Surrey Foundation Trust work in partnership with Procare (the local GP federation for Guildford and Waverley) to provide community nursing services for Guildford and Waverley. Operating through a single referral point, the service operates seven days a week, with out-of-hours provision. The DN team links into Phyllis Tuckwell Hospice community Clinical Nurse Specialists to provide end-of-life care nursing support in the home. The Admiral Nurse team is part of the wider community nursing service in Guildford and Waverley, providing care for carers and families of people with dementia, offering specialist advice, coping strategies, managing symptoms and education to carers, supporting them in their caring role (Adult Community Health Services | Royal Surrey NHS Foundation Trust). [126] Central Surrey Health (CSH) provides DN services to North Guildford, with locations at Goldsworth Park Health Centre, Walton Community Hospital and Staines Health Centre. The CSH DN service operates seven days a week, 8am to 8pm, with out-of-hours provision between 8pm to 8 am (District and Community Nursing - CSH Surrey). [104] Surrey Downs Health and Care provides DN services to the Surrey Downs area. Referral is made via a single point of access, working as an Integrated Neighbourhood Team (INT) as a partnership of local NHS organisations, including GP practices, community services, Epsom Hospital and Princess Alice Hospice. This includes Dorking Healthcare GP Federation who provide DN services. HCRG provides DN services into northeast Surrey, providing end-of-life care with teams including Nurse Prescribers (Community Nursing – Surrey Adult Community Services). [144] The HCRG service is available 8am to 8pm based from Farnham Hospital and Camberley. Frimley Health NHS Foundation Trust (FHFT) provide community services in northeast Hampshire and some community services in Farnham and Surrey Heath. FHFT is the lead commissioner for the night nursing service. First Community health and Care provides DN services in east Surrey, providing end-of-life care seven days a week 8am to 5pm with out-of-hours from 6pm to 6am Based in Redhill (phoenix), South Tandridge, Horley, North Tandridge, Redhill (Care Collaborative), alongside PCNs, East Surrey Hospital and St Catherine’s Hospice (District and Community Nursing service leaflet | First Community Health & Care). [108]

DN teams raised challenges with capacity in meeting the level of need and the growing numbers requiring PEoLC, within their current levels of staffing. Teams also raised the emotional resilience required in supporting people requiring PEoLC in the community as a lone nurse and the emotional management of end-of-life care amidst a varied caseload of nursing duties. Particularly for out-of-hours support. With nurses managing complex medical equipment as a lone nurse and compassionately supporting family members at end-of-life. Peer support from team members was of primary importance, with supervision being a valued support mechanism. DN’s spoke of the benefits of working as a multi-disciplinary team alongside GPs, secondary-care services and hospices in providing joined up flexible care to meet service-user needs.

Neighbourhood Health each Place in Surrey (until April 2025, Surrey Heath, east Surrey, Surrey Downs, northwest Surrey and Guildford and Waverley, as of April 2026 east Surrey, west Surrey) has neighbourhood health programmes led by PCNs. Within Guildford and Waverley and east Surrey (Places pre-April 2026), the focus has been on frailty. In Guildford and Waverley, RSCH, PCNs and VCSE organisations have partnered to create the Frailty Strategy and frailty academy, which provides training to support the workforce knowledge and skills to deliver the strategy. Training includes anticipatory and palliative care.

Surrey Heath neighbourhood health programme pre-April 2025 was undertaken in partnership with Frimley Park Hospital, Primary Care, Phyllis Tuckwell Hospice and community care services, with PEoLC specialist clinical leadership provided by Frimley Park Hospital linking into Frimley ICB through a combined PEoLC clinical lead role. The programme focused on frailty and management of PEoLC through an MDT and co-ordinated care approach.

As of 2026 west Surrey is developing neighbourhood health alongside primary care, secondary-care services and hospice partners, Phyllis Tuckwell Hospice and Woking and Sam Beare. With initial priorities focusing on development of specialist PEoLC telephone support, triage and support in accessing services, as part of preventing hospital admissions and enabling care in the right place.

East Surrey Place has an Aging and Dying Well pilot and ongoing programme, creating an MDT team with in-reach from hospice clinical nurse specialists (CNS) to support PEoLC expertise. East Surrey and Surrey Downs Place (now merged to form the new East Surrey Place) is also an NHS England pilot site for Neighbourhood Health, with frailty as an identified priority. The aim of the programme is to bring care closer to home, including a multi-disciplinary team of community nurses, hospital doctors, social workers, pharmacists and VCSE (Residents in East Surrey to have a ‘neighbourhood health team’ | Healthwatch Surrey). [111]

RSCH, ASPH, Frimley Park Hospital, East Surrey Hospital and Epsom Hospital provide palliative care and end-of-life care for both inpatients and outpatients accessing services within the hospitals who have life-limiting conditions and are at end-of-life. The services are led by consultants in palliative medicine, with an MDT including CNS, nurses, pastoral care. The team in Epsom also includes a social worker, with RSCH, ASPH and Frimley Park Hospital having occupational therapists as part of their MDT. Hospital based PEoLC services link into local community teams and GPs once the person has been discharged from their care. Deaths or passing in the hospital will be managed by Bereavement teams and chaplains, providing advice and practical held for bereaved relatives (Guide To Palliative Care in Surrey | Local End-of-life-care). [100]

Epsom Hospital faces into southwest London as part of the St Georges, Epsom and St Helier (GESH) collaboration of hospitals. East Surrey Hospital alongside Crawley Hospital, provides services as part of Surrey and Sussex Healthcare Trust, providing services in both Surrey and west Sussex. Frimley Park Hospital provides PEoLC services for service-users of all ages across Surrey Downs, also facing into northeast Hampshire, east Berkshire and south Buckinghamshire.

Quality of death within Frimley Park Hospital is supported through hospital charity-funded resources. This includes end-of-life companions who will sit with the person at end-of-life to provide companionship. The companions are trained and supported by the hospital chaplain. The hospital also has a Time Garden, which includes a summer house that is large enough to have a bed within, so that the person can experience the outdoors at end-of-life. Staff discussed constraints with accessing private space on the wards to support relatives. The hospital is due to move and be re-built by 2032, during which the hope is to address the need for private space for people and their families/carers at end-of-life.

Frimley Park Hospital PEoLC service provides multidisciplinary training and education in PEoLC for practitioners across Surrey Heath. Development of skills and competence is further supported by Palliative Care Link professionals including nurses and speech and language therapists who provide informal training across the system as part of providing care.

Psychological provision in life for life-limited people with non-oncology diagnoses was highlighted as a need within acute settings to provide psychological support alongside PEoLC and long-term conditions services. There is talking-therapies provision for people with long-term conditions experiencing anxiety and/or depressions which is not related to their long-term condition, provided by Tier 2 community based psychological services within Surrey and Borders Partnership Trust, We Are With You, Mind Matters and Dorking Healthcare. The talking-therapies provision provides time limited support of up to 15 weeks with Cognitive Behavioural Therapy (CBT) and Counselling offered as interventions. However, the services do not provide support at end-of-life, where hospices and VCSFE support, such as the Brigitte Trust is then usually signposted.

Social prescribing provision for adults is variable across Surrey, aligned to General Practice through Additional Roles and Responsibilities (ARRS) funding. As such practices within Surrey have varying roles and offers for social prescribing. Spelthorne and Surrey Heath have social prescribing services where people can directly refer for support (About social prescribing | Healthy Surrey).[112]

RSCH, ASPH, Frimley Park Hospital, East Surrey Hospital and Epsom Hospital offer clinical and medical oncology services. RSCH is a major cancer centre, offering advanced treatment to adults with cancer across the southeast of England and has a teenage and young adult cancer unit. The team consists of an MDT including consultants in PEoLC, CNS, nurses, dietitians, occupational therapists, physiotherapists and speech and language therapists. ASPH partner with RSCH as part of their group model in delivering some chemotherapy and all radiotherapy at RSCH (Cancer Centre | Royal Surrey NHS Foundation Trust). [127] Macmillan Cancer Support are investing in a new cancer support centre located at Ashford Hospital to provide support to people with cancer and their families (Cancer Services). [101] East Surrey Hospital has an MDT supporting people with care, with dedicated cancer CNS. East Surrey Hospital have partnered with RSCH, as part of the Trust Provider Collaborative, with some chemotherapy and all radiotherapy undertaken at RSCH (Cancer services: Surrey and Sussex Healthcare NHS Trust). [145] Frimley Park Hospital works as an MDT across Frimley Park and Wexham hospitals to deliver care, including support for teenagers and young adults with shared care services (Cancer care: Frimley Health NHS Foundation Trust). [109] Epsom Hospital links into St Georges as part of GESH (St Georges, Epsom and St Helier) in providing cancer care, working as an MDT with services across the hospitals All services link in with tertiary services in London, including (Cancer | Epsom and St Helier University Hospitals). [106] The Royal Marsden for specialised cancer care (Home page | The Royal Marsden). [151] All services support advanced care planning for end-of-life and link into local community services, primary care and hospices to provide care and support.

Care-homes (nursing and residential) provide support for people with life-limiting conditions, including at end-of-life where care is not able to be provided within the home. The complexity of care provided, and financial assessment of care required are factored into assessments of whether care can be delivered in the home, or whether a care-home placement is required. Residential homes provide accommodation and personal care. Nursing homes provides personal care but will also have one or more qualified nurses on duty to provide nursing care. The map below shows care-home provision across Surrey. Qualitative insights regarding care-homes and PEoLC from external organisations were captured within the semi-structured stakeholder interviews and have been incorporated into the thematic analysis.

Each of the Surrey Places pre-April 2026 had Place based MDT’s, either specific to care-homes and/or frailty, as part of case management for people requiring palliative and end-of-life care which fed into Surrey Heartlands or Frimley ICB. Care-home discussions in Surrey Heartlands ICB (pre-April 2026) fed into the Surrey Heartlands Care-Homes Operational Group. Frimley ICB held system PEoLC MDT’s, led by Frimley Park Hospital PEoLC team, whose clinical lead also held the PEoLC clinical lead role at Frimley ICB.

RSCH provide a care-home matron service, in partnership with Procare and Phyllis Tuckwell Hospice, providing joined up care for care-home residents across Guildford and Waverley. One of the aims being to increase advanced care planning and identification of preferred place of death at end-of-life (Care Home Matron Service | Royal Surrey NHS Foundation Trust). [128]

Princess Alice Hospice provides in-reach into care-homes, alongside DNs within Surrey Downs alongside DN colleagues from Surrey Downs Health and Care, with St Catherine’s providing care-home support with DN services within east Surrey.

Marie Curie Surrey care-home evaluation found companion volunteers made a positive impact for care-home residents, giving emotional support and engaging in ACP discussions, to support ACP proactive planning. See appendix 3.

Hospices provide care which is free at the point of use. Unlike in the NHS, it is not fully state funded. While hospices receive some government funding, more than £1.3 billion of the £1.8 billion they need each year comes from donations (What we do | Hospice UK). [116] See the appendices for further data regarding hospices in Surrey.

Surrey has four adult hospices Phyllis Tuckwell Hospice located in Farnham and Guildford, Princess Alice Hospice located in Esher, St Catherine’s located in Crawley and Woking and Sam Beare Hospice located in Woking.

Hospices are a key part of the system support palliative and end-of-life care, having significantly expanded care at home over the past ten years to meet the level of need and responding to preferences in place of care and death, delivering personalised care and supporting experience of care and quality of life and death. Hospices are a key mechanism through which the left shift of hospital to community and prevention of hospital admissions can be delivered.

Hospices are not simply providers of specialist services but form a critical component of Surrey's wider health and care infrastructure. Their contribution supports community services, primary care, care-homes and acute hospitals, helping people to remain in their preferred place of care and reducing pressure elsewhere in the system. The community assets that Hospices are (through co-commissioning and investment, through physical infrastructure and through the voluntary capacity they bring) should be seen by the system as part of the response to rising demand.

Hospices represent a significant co-investment by local communities into the Surrey health and care system. Protecting hospice capacity is therefore not solely a hospice issue but a wider system consideration, as a change in hospice provision is likely to change pressure on primary care, community services and acute hospitals. For Adults, the ICB contributes £7.1 million and Surrey hospices, and their communities contribute a further £27 million, creating more than £34 million of specialist palliative and end-of-life care each year. For every £1 invested by the NHS, hospices and supporters contribute almost £4.

The sustainability of specialist palliative and end-of-life care provision represents a growing strategic risk. Hospices continue to make a substantial charitable contribution to Surrey's end-of-life care system, but increasing operating costs and uncertainty within voluntary income streams raise important questions about the long-term sustainability of the current model.

Phyllis Tuckwell Hospice offers a wide range of palliative and end‑of‑life care services for adults living with advanced or terminal illnesses across west Surrey and northeast Hampshire. Care is available free of charge and delivered in patients’ homes, in care-homes, at the hospices in‑patient unit, and at the Beacon Centre. The hospice receives 30% of its funding from statutory funds, with the remaining 70 to 75% received through voluntary donations and fundraising. Services are not sustainably resourced, with the greater percentage of charitable funds compared to statutory impacting on service delivery and resulting in unmet need.

Phyllis Tuckwell offers targeted and specialist PEoLC clinical and social support including symptom management, emotional and psychological support, advance care planning, and therapies (physiotherapy, occupational therapy, complementary therapies). Patients receive support at home, including care-homes, or at the hospice in-patient unit, with coordination between teams including GPs, district nurses, and other community services. The hospice provides in-reach into local hospitals, supporting admission prevention within A&E and supported discharge.

Hospital at Home Clinical Nurse Specialists (CNS) and health care assistants provide hands-on care within the home. Services are embedded within the local healthcare system, with teams attending Gold Standards Framework meetings alongside General Practice and Primary Care Networks and are part of the Integrated Neighbourhood Teams. Phyllis Tuckwell works alongside three District Nursing teams, with the community nursing teams supporting with targeted PEoLC for people with complex end-of-life care needs such as setting up syringe drivers. The hospice also provides support to families during transitions of care, for example when a patient moves between hospital, home, nursing homes, or our in-patient unit, helping them understand what to expect and feel supported throughout the process.

The hospice provides free PEoLC education including PEoLC education programmes for internal and external health professionals, clinical skills education including verification of death and GP PEoLC training. Hospice staff lecture in PEoLC at the University of Surrey, helping to deliver the nurse prescribers programme to undergraduate nurses, midwives and paramedics.

Phyllis Tuckwell Hospice are opening a new eighteen bed unit in 2026, to meet the growing end-of-life care needs of their population. Previously the hospice had fourteen beds, then reduced to ten beds due to staffing capacity. People with complex needs are admitted to the in-patient unit, provided by PEoLC consultants, CNS’s and doctors, where needs cannot be supported within the community. Medical needs, alongside carer needs are considered when admitting. Not all people who want to die in the hospice are able to, due to lack of staffing capacity and resources, with people as a result dying in hospital including where this is not their preference. The average length of stay at end-of-life is ten days, with some fluctuations due to need. Where people can be supported to die at home, they are discharged from the hospice.

Services include the Living Well programme physiotherapy, occupational therapy, home support volunteers, psychologists, welfare advisors, wellbeing support and rehabilitation. Patient and Family Advisors provide practical guidance and advocacy for families, helping them navigate benefits, access community resources, understand care options, and coordinate support during difficult transitions. Counsellors provide support for people with PEoLC needs and their families and children. The hospice is building relationships with people who are under-served in their communities and working with community groups supporting those experiencing health inequalities.

Princess Alice Hospice provides end-of-life care for adults aged 18 and over resident in Surrey Downs and northwest Surrey, with care provided in the hospice, at home, through Compassionate Neighbours and within their wellbeing centre. Approximately 20% of Princess Alice Hospice funding comes from statutory funding, with the remaining 80% of funding secured through voluntary donations and fundraising.

Princess Alice has funding for sixteen beds and operates at twenty in-patient beds with 80% occupancy. People are considered for admission to the Hospice in-patient unit when their care can no longer be safely managed at home, when they need specialist support for symptom management, or when there is a significant psychosocial crisis affecting them or their family. Care on the Inpatient Unit is provided by a multi-disciplinary team of PEoLC doctors, nurses, healthcare assistants, allied health professionals, social workers and spiritual/ emotional care professionals.

Most adults at end-of-life are supported by the hospice at home community team in their own homes. The team consist of Clinical Nurse Specialists (CNS), PEoLC medical doctors, healthcare assistants, allied health professionals and social workers. They provide specialist symptom management and advice for complex palliative care needs, while also supporting patients and their families with practical guidance and emotional support. Importantly, the team work alongside other providers, such as GPs and DNs to coordinate the delivery of care to support patients remaining at home and avoiding unnecessary admission to hospital. To enable effective multidisciplinary working, the hospice attends GP Gold Standard Framework meetings and Integrated Neighbourhood Team meetings. The community team provide multidisciplinary advice and support from Monday to Fridays during core working hours. However, Clinical Nurse Specialist support is available seven days a week between 8am and 8pm for advice and urgent input. Hospice advice is available outside of these hours, 24-hours a day via the CareLine service and a night response visiting service (available in Surrey Downs).

The wellbeing centre provides a range of sessions to support independence and build confidence, including physiotherapy, occupational therapist and psychosocial led support managing breathlessness, managing fatigue and providing support for anxiety. The offer is flexible including seated exercise, yoga, art and music. Complementary therapists provide reflexology, massage, acupuncture and reiki. Counselling and psychosocial support is provided to people with PEoLC needs and their family, including children. Compassionate neighbours are trained volunteers supported by the hospice, providing a listening ear to people with life-limiting conditions.

Princess Alice Hospice provides training and support for multi professions and organisations, including GPs and care-homes, with training PEoLC training packages delivered to meet the needs of the organisation and team. The hospice has a dedicated researcher, who ensure education is based on best practice and supports evidence-based practice for staff within the hospice. The hospice takes part in portfolio research studies. Princess Alice delivers the European Certificate in Essential Palliative Life Care, a continuing professional development course, with a cohort of up to 400 people running twice a year across the UK.

One of the organisational priorities is reaching under-served communities. Princess Alice has conducted improvement projects in providing personalised and accessible PEoLC services for people with learning disabilities and providing outreach supporting people experiencing homelessness.

Watch this video to find out more about how Princess Alice Hospice supports families together (Families together | Videos & Movies on Vimeo). [136]

St Catherine’s Hospice provides clinical, therapies, emotional and welfare support within the home and hospice for people at end-of-life resident in East Surrey. St Catherine’s now sees more complex people within the hospice, requiring targeted PEoLC.

The inpatient unit has twenty-four beds, with sixteen in total currently in use, twelve for specialist end-of-life care or symptom management, three for non-complex palliative care funded by Surrey and Sussex Healthcare Trust (SASH) for step down from East Surrey and Crawley hospitals and one funded by Continuing Healthcare (CHC) (previously Sussex ICB) as a pilot to support fast track CHC referrals. Of the twenty-four beds, twelve are permanently open. The inpatient unit has a multi-disciplinary team (MDT) of consultants, clinical nurse specialists (CNS), doctors on rotation and a visiting pharmacist. All people residing in the inpatient unit will be seen by a therapist to assess if therapeutic pain management is required. The average length of stay is two weeks for people admitted for end-of-life care. The unit has 90 to 95% occupancy, with a waiting list of people to be admitted, with the biggest referrer being SASH Trust. St Catherine’s is currently exploring with SASH Trust and SeCamb in supporting direct ambulance conveyance to the hospice.

The community service criteria have been scaled back due to funding limitations, with teams now providing specialist support and advice to community teams working with the person in the home, such as GPs and DNs. There is a symptom advice line from Monday to Sunday 8am to 4pm to give advice. The core elements of PEoLC and out-of-hours support are met by the First Community DN service, with targeted support and advice are given to health care professionals 24/7 by the St Catherine’s team. St Catherine’s are looking to re-introduce 24/7 advice for patients and families. CNS’s and doctors oversee clinical provision within the team.

The therapies team works within the hospice, consisting of physiotherapy and occupational therapists. Care is no longer provided in the home, with the exception of occupational therapy providing PEoLC rehabilitation, due to funding limitations. The team support with PEoLC goals, including therapeutic support for breathlessness, fatigue management and respiratory conditions. The team report improved quality of life as a result of improved physical health and mobility and reduced isolation, preventing the person from de-conditioning and becoming immobile. Resources, such as the gym, are shared with NHS providers.

Emotional, spiritual and religious wellbeing are supported within the hospice and people under the care of St Catherine’s, providing counselling support for people aged 18 and over, including family members. The service uses a hub in Oxted to provide outreach into communities. Up to eight sessions can be offered, with on-going support offered up until five years after death. Spiritual care is offered within the hospice for people of all faiths, or of no faith. The spiritual team lead wellbeing on the inpatient unit, providing a conduit for services, including welfare and social support. The team are supported by visiting art and music therapists. Complementary therapy is available, with a spa bathroom completed in 2026.

Woking and Sam Beare Hospice provides clinical, therapies, emotional and welfare support within the home and hospice for people at end-of-life resident in northwest Surrey. The hospice also provides inpatient specialist palliative and end-of-life care for patients with complex symptom management needs or where care can no longer be safely delivered in the community. The inpatient unit works closely with community teams, acute hospitals and primary care to support admission avoidance, timely discharge and preferred place of care and death where possible. Woking & Sam Beare Hospice and wellbeing care operates within a mixed funding model, receiving a proportion of its income through NHS funding and generating the majority through charitable donations, fundraising activities, retail operations and gifts in wills. This funding supports the delivery of specialist PEoLC that remains free at the point of access for patients and those important to them. [162]

The hospice care at home team delivers end-of-life care within the home, led by nurses and supported by health care assistants. Offering advice and support within the home, complementing care given by community healthcare colleagues, including CSH DN service. This care is given usually within the last six to eight weeks of the person’s life. Providing care co-ordination and support seven days a week. The service supports rapid response assessments and works closely with district nursing, primary care and other healthcare professionals to coordinate care and help prevent unnecessary hospital admissions.

Palliative care services in the community account for over 70% of care delivered by the hospice. Provided by a multi-disciplinary team of CNSs and consultants, the service works alongside GPs and district nursing teams to provide care in the community. The team visit any care setting or the person's home, seven days a week, supported by a 24-hour advice line. The specialist palliative care team supports patients with both cancer and non-cancer diagnoses and provides expert symptom management, advance care planning, ReSPECT discussions and care coordination across organisational boundaries. The service also supports care-homes across northwest Surrey through specialist advice, education and collaborative working with care-home staff and primary care teams.

A range of therapies are available including occupational therapy, physiotherapy. The Bradbury Wellbeing Centre provides a range of rehabilitative, therapeutic and wellbeing services aimed at helping people live as fully and independently as possible alongside serious illness, supporting physical, emotional, social and spiritual wellbeing. Wellbeing offers also include support groups, complementary therapy and activities such as gardening and art.

Counsellors offer support to people at end-of-life and their family and carers, including one-to-one and group support. Carers are also able to access a limited number of complementary therapies. Bereavement support is available to families, carers and those important to the patient both before and after death, through individual support, groups and specialist counselling services.

Woking & Sam Beare Hospice and wellbeing care plays a key role within the wider northwest Surrey health and care system, working in partnership with primary care, community services, acute trusts, care-homes and voluntary sector organisations to improve access, coordination and quality of palliative and end-of-life care. The hospice is actively engaged in neighbourhood health development and wider system initiatives that support people to receive care in the most appropriate setting, aligned with their needs and preferences.

3.1.5 End-of-life care services and provision for all ages

Some initial work was undertaken in 2024 to evaluate Surrey Public Health, Health and Local Authority approaches to death and dying and creation of Compassionate Communities and a Compassionate City Charter. Training and a self-evaluation charter were undertaken, highlighting areas of need and further development for compassionate communities within:

• schools

• workplaces

• trade unions

• places of religious worship

• hospices and nursing homes

• museums and art galleries

• neighbourhood activities

• communications and events

• diversity of the population and needs in death and dying

• organisations supporting people experiencing homelessness

• prisons

Areas requiring further development included schools, trade unions, museum and art galleries, communications and events, meeting diversity of need and meeting the needs of people experiencing homelessness. Hospices and care-homes and neighbourhoods as areas where support has been further developed. Following completion of the self-evaluation, the Compassionate City Charter was not developed further by Surrey.

The Compassionate City project undertaken in Sheffield was collaboratively funded by Local Authority, Hospice and Health. The project found 95% of time at end-of-life is in our communities. Demonstrating the importance of community-based care and support for end-of-life, as part of prevention of poor quality of death and enabling quality of life. The Sheffield Compassionate Community team consists of an MDT of community development workers, events and engagement support, project manager support with access to a clinical lead, public health lead and oversight from a steering group. The overarching strategy was to increase death literacy, strengthen community networks of support, remove barriers and exclusion, challenge over medicalisation and build connected and collective impact utilising asset-based community development. The project is on-going and has evidence increased community and social confidence in death and dying, more accessible support, stronger local networks, increased awareness of local assets and a shift towards community ownership (Compassionate Sheffield). [103]

Adults and children and young people (CYP) over the age of 5, can be funded for health care at end-of-life through Continuing Healthcare (CHC) or Children’s Continuing Care (CCC). Where individuals have been assessed to have a primary health need, the NHS is responsible for providing all of their health and social care, including accommodation, if that is part of their assessed needs (Surrey All Age Continuing Care | ICB – Surrey and Sussex). [122] A significantly greater number of adults are funded for CHC compared to CYP CCC, with the majority of CCC funded for fast-track end-of-life hospice care. Data showing CHC and fast track adult patients in receipt of funding at end-of-life from 2023 to 2025 can be found in the below table. CCC data was not available.

Table 3: Numbers of adults receiving CHC funding in Surrey 2023 to 2025

Medicines management for end-of-life care are operationally managed within secondary-care within hospitals, by GPs and community care, including community pharmacists, with oversight (until 2025, restructure in 2026) from the Medicines Management team within the Integrated Care Board (ICB). Out-of-hours palliative and end-of-life care drugs are managed by contracted out-of-hours pharmacies across Surrey. Although these have reduced in number. Palliative and end-of-life medicines are reviewed by the Medicines Management team within the ICB and approved by Medicines Optimisation Board and Commissioning Committees within the ICB (until 2025, restructure in 2026). Medicines Administration Records (MAR) charts are used across the system to provide a record of a person’s treatment with medicines while under the care of a healthcare provider. There are multiple MAR charts in use across Surrey, work is underway across Surrey led by the ICB, to agree a single MAR chart template, to unify communication of prescribing and reduce prescribing errors. There are various prescribing palliative and end-of-life care guidelines across Surrey. The ICB Medicines Management team have planned to streamline guidelines in use across Surrey and publish these on the Surrey Prescription Advisory Database, to reduce variation in prescribing at end-of-life.

In 2024 to 2025 SeCamb Ambulances attended 5293 end-of-life care patients across Surrey, Sussex and Kent, with an average on scene time of 1 hour 48 minutes. The majority of calls occur between 9am and 11am on weekdays, with an even spread of calls throughout the week. Causal factors for SeCamb call outs for end-of-life care include access to just in case medications where patients are unable to otherwise access end-of-life medications. The data shown in the table below is for Kent, Surrey and Sussex 2024 to 2025.

Of the 5293 patients, 1827 patients had a DNACPR in place. 377 of those patients received a resuscitation attempts with 87% of these initiated over the telephone and 36% given resuscitation by crews, 68% of calls were taken out-of-hours. The below tables show call outs by CCG, with Surrey Downs having the highest number of calls for Surrey. The combined call-outs for Surrey Heartlands and Frimley ICB’s 2024 to 2025, are lower in comparison to Sussex and Kent. Surrey has the second highest occurrence of longest calls outs after Sussex, with the longest call out being 5 hours and 15 minutes and 17 seconds. Feedback from SeCamb has discussed lack of advanced care planning (ACP’s), access to clinical records (including ACP’s) and medicines being causal factors.

All staff have education around end-of-life care and care planning before commencing their role with SeCamb. Non-registrants have half a day. Registrants have some time to discuss SeCamb specific pathways and protocols to complement their pre-registration learning before they go on the road.

Table 4: SeCamb Surrey, Sussex and Kent SeCamb data longest on scene time audit 2024. Incidents with longest JCT

Table 5: SeCamb Surrey, Sussex and Kent SeCamb data longest on scene time audit 2024. Incidents with longest On Scene Time

Of all the conveyances across Kent, Surrey and Sussex:

• 20 out of 42 patients were admitted directly to a hospice.

• 26 of 42 cases were in hours.

• Most were known to end-of-life care team.

Medical devices and equipment at end-of-life are provided to support activities of daily living, mobility and delivery of medications and healthcare. Equipment is assessed by social care and health therapists and nurses, including hospital beds, toileting aids and hoists. Social care and health services are able to support rapid provision of equipment to create care environments within the home at end-of-life. Social care equipment is managed on behalf of Community Equipment Services (CES) in Surrey. Ross Care provide wheelchair services and postural management in Surrey. Assessment and provision are undertaken by Physiotherapists, occupational therapists, clinical scientists and clinical technologists who have specialism in wheelchair and posture management. Urgent and standard referral pathways are available to facilitate urgent provision of equipment for people at end of life. There can be challenges at end-of-life in accessibility of medical equipment into the home environment, due to space and layout constraints. Prior planning is needed and if necessary, home adaptations by social care may be required to enable a home care set up to be put in place. Medical equipment provided within the home including equipment to administer medications, take oxygen saturation readings, ventilation equipment (CPAP, BiPAP) and suctioning for secretion management are prescribed and provided by primary care and secondary-care health services. Maintenance is arranged by the provider, this can be challenging when tertiary centres prescribe equipment, to put in place adequate repairs and maintenance planning from outside of Surrey. Urgent provision of equipment has been highlighted as an area of need, in enabling discharge home in a timely manner to support end-of-life care in the community.

End-of-life care in Surrey’s prisons The Dying Well in Custody charter mirrors the ambitions for PEoLC, setting out standards for PEoLC within prisons (NHS England » Dying well in custody charter). [120] The insights below were collated from semi-structured interviews with those involved at local and national level with PEoLC in prisons. Surrey County Council are responsible for undertaking Section 9 Care Act assessment of the needs of the population and what needs to be put in place. Reasonable adjustments are made within the prison, with peer support workers providing low level health needs support. All prisons within Surrey have peer support in place, with the exception of Bronzefield.

During semi-structured interviews it was raised that end-of-life care in prisons is an area which needs to be addressed. The current Surrey prison estates are now able to support people with end-of-life care needs. High View prison has worked with health to provide support where possible on the wing, prisoners currently die in their cells if compassionate release has not been secured. Bronzefield have a 24-hour healthcare unit, however it does not include PEoLC clinical specialism, it is likely that people would be moved to the healthcare unit at end-of-life for privacy. The unit has twelve beds and is usually at capacity with people awaiting release to mental health units. High Down have three cells which accommodate people with physical disabilities, there are not currently any cells for people with physical disabilities on the sex offender’s wing. Moving people out of prison for time limited secondary-care can be a simpler process than end-of-life care, as more distinct timeframe can be put on hospital episodes of care for an acute health condition with discharge planning back to prison in place. Whereas for end-of-life care the person is not usually expected to return to the prison and the timeframe for the episode of care is harder to define.

People are supported as much as reasonably possible to die with dignity. Social care is able to provide support for social needs and is not able to provide 24-hour health care within prisons. If there is a need for 24-hour health care within the prison for an individual, then a continuing healthcare pathway would be considered. If the person was in the community, a residential placement would be considered such as a care-home or nursing home. Some prisons in the UK have healthcare units, however these are few in number. There are currently no health units in Surrey prisons which can support end-of-life care.

Currently if a prisoner in Surrey requires end-of-life healthcare which cannot be provided within the prison, they can obtain a compassionate release if applied for on a temporary license in order to access care. There are a number of barriers for prisoners accessing external healthcare at end-of-life. Difficulties arise when accessing residential nursing homes or hospices, due to safeguarding concerns raised by organisations. Interviewees expressed that where the risk may be low, due to the conviction itself, or the persons state of health reducing the risk to other residents and staff, external organisations are reluctant to have convicted prisoners residing under their care. The compassionate release system requires a letter from a consultant to state the persons prognosis and length of time until death. Consultants are reluctant to give definitive dates for length of time until death, as this cannot not always be accurately estimated.

Prison commissioners in NHS England are undertaking a review of people on, or about to go onto a PEoLC pathway who are residing in prison which is expected to be completed in the next 12 months. The prison population is ageing and as such NHS England are aware of the increasing PEoLC need within prisons.

Medical examiner (ME) processes have changed, as of September 2024, all deaths or passing not investigated by a coroner will be reviewed by a medical examiner (An overview of the death certification reforms - GOV.UK). [105] For Surrey the ME teams are based at ASPH and Frimley Park hospital (NHS England » Medical examiner offices). [121]

For all non-coronial deaths or passing in the community, the process is as follows (Medical Examiner Scrutiny of Community Deaths or passing – Surrey and Sussex LMCs): [146]

• The GP or hospice medic completes the Medical Certificate of Cause of Death (MCCD)

• The ME reviews the case and proposed cause of death.

• The ME contacts the next of kin/legal guardian to check for any concerns.

• The ME confirms clearance to proceed with registration of the death.

For deaths or passing in hospitals within Surrey, the MCCD is signed by a doctor who has seen the patient during their last illness within 28 days before their death. The ME then examines the case as per the above process.

Following clearance from the ME, the death is required to be registered within five days of the register office having received the paperwork from the medical examiner about the cause of death. The next of kin/legal guardian is required to book the appointment with the registry office and must attend the appointment in person (Death registration appointment - Surrey County Council). [159]

Care of the body after death is held by hospital mortuary teams, funeral directors or services where cold cots/bds are available. Shooting Star Children’s Hospices offer the Willow Suite, which supports families in spending time with their baby, child or young person following death (Willow-suites-Christophers-2-1.jpg (1067×1067). [129] The Child Death team can support families in having their baby at home through their cold-cot service, although this is potentially subject to change during 2027 (Parents & Carers – Surrey Safeguarding Children Partnership). [149]

Mortuary teams in hospitals provide mortuary and post-mortem services, caring for the body of the person following death or passing, either in the hospital or community. Mortuary teams provide hospital consented postmortems and coronial postmortems on behalf of HM Coroner of Surrey (Surrey Coroner - Surrey County Council). [161] The death cannot be registered until the coroner has taken all actions for the investigation. If the Coroner decides further investigation is needed, a temporary death certificate can be given to manage the persons’ estate e.g. their bank accounts etc.

Surrey and Sussex ICB as of April 2025, previously known as Surrey Heartlands ICB and Frimley ICB, has a statutory responsibility to commission palliative and end-of-life care services within Surrey (NHS England » Palliative and end-of-life-care: Statutory guidance for integrated care boards (ICBs)).[88]

NHS England continues to commission specialised services for rare and complex conditions, including rare cancers and genetic disorders. Services are managed by specialised commissioning regional teams, with Surrey and Sussex ICB falling under the southeast regional team NHS commissioning » Specialised services, [119] linking into London specialised commissioning regional team.

4. Carers and end-of-life care

Evidence indicates that the estimated value of informal family care (£51,835) is almost three times greater than the cost of acute hospital care (£18,913) for a person in the last year of life and highlights the extent to which community-based end-of-life care is dependent upon the availability and resilience of unpaid carers.

The Government's 10 Year Health Plan for England, which promotes a shift from hospital-based care towards care delivered closer to home and within local communities, will inevitably increase reliance on unpaid carers to provide substantial amounts of care and support.

The economic and quality-of-life benefits of delivering end-of-life care within the community are clear. However, the shift of care from hospital to community has a potential impact on family carers who are often providing intensive support twenty-four hours a day.

Unpaid carers save the UK economy an estimated £184 billion each year (Carers UK, 2025). Despite this significant contribution, caring can come at a significant personal cost, particularly when carers do not receive adequate support and are left to manage complex care responsibilities alone.

Increasingly, health and social care professionals rely upon unpaid carers to undertake complex and highly skilled tasks, including:

• ventilation management

• tracheostomy care

• gastrostomy care

• nasogastric (NG) feeding

• catheter care

• physiotherapy exercises

• medication administration, including PRN medication

• pressure sore prevention

• oxygen management

• ongoing monitoring of health conditions and symptoms

Impact on Unpaid Carers

The Carers UK State of Caring Survey (2025) [102] found that:

61% of unpaid carers provide 50 or more hours of care each week.

While a typical home care package may consist of up to four visits per day, professional support often totals only around three hours daily. The unpaid carer therefore provides the majority of care between these visits. Workforce shortages can further increase the likelihood of carers being left to manage alone for extended periods.

42% of carers reported that their physical health had suffered because of caring, while 20% reported experiencing an injury as a result of their caring role.

Many carers do not receive adequate or timely training in areas such as moving and handling, despite being expected to undertake physically demanding tasks associated with personal care and mobility.

62% of current or former carers reported that they felt they had no choice but to take on a caring role because no alternative care options were available.

While unpaid carers provide much of the care that enables people to remain at home, the Care Act (2014) is clear that services must not assume that family members are willing or able to provide care. Carers have a legal right to their own assessment, including consideration of whether they are both willing and able to continue caring.

43% of carers report feeling lonely.

Many carers also experience significant financial hardship. As caring responsibilities increase, carers frequently reduce working hours, leave employment altogether, or experience barriers to career progression.

Carers UK (2025) reports that:

• 21% of carers are struggling to make ends meet;

• 9% are in debt because of caring responsibilities; and

• 49% have reduced spending on essentials such as food, heating, clothing and transport.

This report highlights the significant social and emotional impact of caring, particularly during end-of-life care when carers may experience isolation, anticipatory grief and emotional exhaustion.

5. All Age Health Inequalities in End-of-life care in Surrey

This section brings together data from a range of quantitative and qualitative sources from across the Surrey system and national data, to draw insights into people with protected characteristics and inclusion health groups in Surrey. Any omissions in data do not reflect a lack of need, but reflect the lack of data available, or inability to access the data at the time of writing the JSNA.

5.1 Gender

The below table shows deaths or passing over time for people of all ages resident in Surrey between 2023 and 2026 broken down by age, gender and Place (Surrey Heartlands ICB Place as of 2025).

Females account for 50.84% of deaths or passing across all ages, with Surrey Downs Place having the highest number of deaths or passing between 2023 and 2026. The figures do not adjust for population size in each age group. From 2023 to 2025 there were significantly more male child deaths or passing. The causal factors for this difference are not known, but this mirrors the national pattern. Data from 2023 shows UK female mortality is 14% higher than the median for females and 9% higher for males, when compared to international peers. UK mortality trends and international comparisons | The Health Foundation) [10]

The distribution of deaths or passing, shows a dip between the ages of 10 and 19, with the proportion of deaths increasing with age for both males and females.

The proportion of deaths is higher for males compared to females for children aged 0-9, however the differences are not significant.

The proportion of deaths are higher for males than females in every age band, other an 85 – 89 and 90+ where female deaths are significantly higher.

The total adult deaths April 2023 to 2025 for aged 18+ years is 21085 (approximately due to data suppression for ages 18 and 19 years). The figures do not adjust for population size in each age group.

Impact

Male healthy life expectancy is 67.76 years, with females at 69.69 years in Surrey. As women have a longer life expectancy in Surrey, they also expect to spend longer living in poor health, at around 15 years. There is intersectionality with health inequalities in life expectancy and healthy life expectancy, with deprivation, ethnicity and multiple disadvantage being contributary factors to inequity, alongside gender (Life expectancy | Surrey-i). [22]

5.2 Deprivation

For context, Surrey County is ranked 150th most deprived upper tier local authorities, out of 153. Surrey is ranked within the middle third of English counties, primarily due to high cost of housing (Indices of Deprivation (IoD) 2025 in Surrey | Surrey-i). [154] As a single county we rank low in deprivation, however Surrey contains six neighbourhoods which are in the 20% most deprived in England, with a further twenty-two in the 30% most deprived, with income and health gaps found within towns and villages. In Surrey, Spelthorne is the most deprived of Surrey’s individual council areas. Tandridge is the most deprived in barriers to housing and services. Epsom and Ewell are the least deprived (Indices of Deprivation (IoD) 2025 in Surrey | Surrey-i). [154]

Inequalities at end-of-life care, linked to deprivation exist, both in access to services and care to support personalised care and choice at end-of-life and impacting likelihood of death or premature death. [33] Marie Curie national research found the risk of being in poverty in the last year of life decreases with age, with 31.2% of 20- 44 year olds with cancer living in poverty at end-of-life compared to 15.5% of those aged over 80. Those who are from minority ethnic groups have a much higher risk of poverty compared to those who are white, which increases at end-of-life. [34]

From April 2023 to March 2025 Woking, Epsom, Ewell, Runnymede and Spelthorne had a higher proportion of all local resident deaths or passing and passing, with Spelthorne notably elevated at 14.1%. Woking 004F and Spelthorne 001B are ranked two and five respectively by Indices of Multiple Deprivation (IMD) score. Epsom and Ewell 007A is ranked eight and Runnymede 002F eleven (Key Neighbourhoods | Surrey-i). [98] All are Priority Neighbourhoods within the Surrey Health and Wellbeing strategy and are within the 30% most deprived Local Super Output Area’s (LSOAs) nationally.

In Surrey life expectancy is lower in the most deprived quintiles, compared to the least deprived quintiles, with circulatory disease, cancer and respiratory conditions contributing to the inequity in male and female life expectancy in Surrey (Deaths or passing by area of usual resident: LSOA, ward and CCG | Surrey-i).[12]

The National Child Mortality Database NHS Surrey Heartlands (SH) Integrated Care Report for deaths or passing between April 2019 and March 2025, highlighted an increased incidence in neonatal, infant and child deaths or passing living in the most deprived areas of Surrey.

Table 6: Number and rate of baby and infant deaths or passing <1 year between April 2019 and March 2026 by deprivation quintile in Surrey (National Child Mortality Database)

Table 7: Number and rate of deaths or passing 1 to 17 year olds between April 2019 and March 2026 by deprivation quintile in Surrey (National Child Mortality Database)

The Surrey Child Death Review Partnership Neurodisability and Infant and Child Deaths or passing in Surrey: A Thematic Review of Deaths or passing that Occurred Between 2016 to 2020 [35] found there was a higher percentage of infants and children who had died living in areas of deprivation. When this was further broken down by ethnicity, children who were Asian with a neurodisability where more likely to be living within the lowest third in terms of income deprivation in Surrey.

The 2014 to 2024 Surrey Child Death Review Partnership ‘Sudden Unexpected Death in Infancy, a ten-year thematic review of deaths or passing of babies normally resident in Surrey 2014 to 2024, [35] reported 53% of infant sudden deaths or passing were known to have experienced one of more elements of deprivation. The triple risk model [36] includes the sleeping environment as an extrinsic risk factor. Child poverty can result in bed poverty and sharing of beds between parents, infants and children, due to families prioritising essentials such as food or heating. [37] Research shows the importance of prevention in the first 1001 days of life of sudden and unexpected death. [38]

MBRRACE-UK have reported higher incidence of maternal death in areas of deprivation, with women and birthing people living in the most deprived areas having nearly twice the mortality rates of women and birthing people living in the least deprived areas. [23]

Impact

Research suggests widening mortality inequalities in the UK. [39] With Surrey analysis highlighting preventable causal factors for premature death both children and adults. Research has found people with lower socio-economic status are more likely to die in a hospital, are less likely to ask for a hospice bed and less likely to feel they had care within their own home, than those of higher socio-economic status. (Kessler et al., 2005) [40](Gomes, B. and Higginson, I.J., 2006) (Dixon et al., 2015). This reflects Surrey local insights and data of high intensity users of services, experiencing deprivation and/or multiple disadvantage presenting at hospital in acute crisis. The data and research highlight the need for whole systems prevention of premature death, starting in the first 1,001 days of life and personalised accessible care, addressing intersectionality of inequalities in quality and preferred place of death.

5.3 Ethnicity

From census data in 2021, three quarters of Surrey residents reported that they identified as white British, with 8.9% reporting they were white other and 14.5% reporting they identified as ethnicities which were not white. Woking has the highest percentage of ethnic minority communities, followed by Spelthorne. Waverley borough had the lowest percentage of ethnic minority communities. [41] The ethnic minority population in Surrey is growing, with Surrey Minority Ethnic Forum reporting 23.4% of Surrey residents being from ethnic minorities. [42]

From Surrey Heartlands ICB Business Intelligence Tableau data, taken from the National Mortality Database for adults of 18 years and over, white/ white British/white Irish ethnicity has the highest number of deaths or passing in Surrey, which is in line with the Surrey demographic. However, these numbers may be impacted by the high number of “not stated” ethnicities as the data shows below.

The second highest recorded deaths or passing are for people whose ethnicity is “not stated”. This impacts accuracy of reporting for ethnicity data in other datasets from the National Mortality Database for adult deaths or passing in Surrey. The impact of “not Stated” on data quality, analysis and service delivery is discussed further below.

The third highest number of deaths or passing are for people of Asian heritage: Bangladeshi/ British Bangladeshi, Indian/British Indian, Pakistani/ British Pakistani, other Asian/British Asian/Asian Unspecific. Although as discussed, numbers may be under-represented due to the high reported “not stated” numbers.

Data provided by Surrey Child Death Review team shows that although the proportion of child deaths or passing between April 2023 and March 2025 were significantly lower in number for children of Asian/Asian British, other white backgrounds, black/black British and mixed ethnicity when compared to those that are white British, these proportions are high when considering the population size for Surrey residents from these ethnic groups.

• 8% of the Surrey population is Asian/Asian British, however this ethnic group account for 17% of child deaths or passing.

• 2% of the Surrey population is black/black British, however this ethnic group account for 8.7% of child deaths or passing.

Table 8: Number and rate of neonatal deaths or passing between April 2019 and March 2026 by ethnicity in Surrey (National Child Mortality Database).

Table 9: Number and rate of infant deaths or passing between April 2019 and March 2026 by ethnicity in Surrey (National Child Mortality Database)

Table 10: Number and rate of child deaths or passing between April 2019 and March 2026 by ethnicity in Surrey (National Child Mortality Database)

In Surrey Asian/Asian British babies have a 73% increased risk of neonatal death compared to white babies. Women and birthing people from ethnic minority backgrounds are more likely to have a baby born prematurely before 27 weeks. [13] Premature birth complications are the leading cause of death among children under 5 years of age. [43] The MBRRACE UK 2025 report highlighted on-going health inequalities, with Asian women and birthing people 1.3 times more likely and black women and birthing people 2.3 times more likely to die from childbirth, compared to white women and birthing people [44], which is reflective of the experiences of women and birthing people in Surrey as evidenced in the Surrey Perinatal Equity Strategy.

Impact

As discussed later in the JSNA, highlighted in semi-structured interviews and hearing from people with lived and living experience, culture represents an important part at end-of-life alongside ethnicity. Representatives from ethnic minority communities in Surrey spoke of social taboos around speaking of death and dying within cultures, including some south Asian and Afro-Caribbean cultures, particularly around child death. For south Asian communities, living in multi age households, preference for care at end-of-life is within the family.

Within Gypsy Roma Traveller (GRT) communities, cultural traditions around death vary. Community members have a desire to die at home and to be cared for by family. Members of the community visit the dying person as a sign of ReSPECT, which can be large in number. Some studies have described feelings of shame in seeking support at end-of-life from a non-GRT person. Hygiene and death rituals are important, with concern that this would not be possible within a hospital or hospice. Death is generally a taboo subject, which is rarely discussed. [45] Regarding care of the deceased, Romany Gypsies and Irish Travellers holding a wake the night before the funeral with Romany Gypsies preferring to have the deceased at home, with Irish Travellers preferring to stay in the funeral parlour the night before the funeral. [46] This guide gives advice for how to support Gypsy Roma and Traveller people at end of life for practitioners and commissioners Care committed to me : Delivering high quality, personalised palliative care and end-of-life care for Gypsies and Travellers, LGBT people and people experiencing homelessness - Friends, Families and Travellers

This video created with people from GRT communities discusses experiences and barriers faced in accessing healthcare, including palliative and end-of-life care.

Understanding health needs of Gypsy, Roma and Traveller populations

This video talks about providing palliative and end-of-life services for people with cancer from Gypsy Roma Traveller Communities.

Don't face it alone – a Travellers’ Times and Macmillan’s Cancer support advice film for Gypsies and Travellers | Travellers Times

There is under-representation of ethnic minority communities in datasets. Ethnicity recording has lower levels of recording in datasets, when compared to other demographics captured within datasets. Almost a quarter of waiting list records for quarter for 2023 to 2024 had an “unstated” ethnic category. “Not stated” should be used where a person has been given the opportunity to share their ethnic category but has chosen not to. The impact of “not stated” or “not known” ethnicity recording impacts on the ability to personalise services and ability to identify unmet need.

Table 11: 2023/24 Q4 unknown and not stated ethnicity reporting.

Data were for acute activity in the final quarter of 2023/24 (Jan, Feb, Mar) for Admitted Spells and Emergency Care; for all inpatient and outpatient RTT pathways reported on the waiting list in Q4 23/24; and for 3 months of GPES data up to 16th April 2024 (published on the 25th April 2024).

The data shows disproportionate neonatal, child, maternal and adult premature death for people from ethnic minorities, which is further impacted by intersectionality with wider health inequalities. Research and Surrey data show culture is inextricably linked to seeking support and quality of death. Reports by MBRRACE and SMEF Speaking for Ourselves, [47] discuss the need for cultural awareness in practice and addressing unconscious bias and racism in care, to address barriers to care and inclusion in practice. Under-representation of ethnic minorities in organisation and system datasets, results in practitioners, services and commissioners not being able to fully identify need and facilitate personalised compassionate care.

5.4 Learning disability, autism and neurodivergence

The Surrey Learning from Lives and Deaths or passing (LeDeR) Annual Report 2021 showed life expectancy inequity for women with learning disabilities, dying 22 years earlier than the general population [48]

LeDeR has found that people with learning disabilities are three times more likely to die from an avoidable cause. With the most common causes of death of people with learning disabilities in Surrey being respiratory, circulatory conditions and infections, which is in line with national causal factors. The Surrey Child Death Review Partnership Neurodisability Thematic Review 2016 to 2020 found 14% of children included in the review had respiratory conditions as the primary cause of death. 41% of the children included in the review had a diagnosis of epilepsy [49]

Between 1st April 2023 and 31st March 2025, there was a total of 13 deaths or passing of children with a learning disability, aged between 4 and 17 years old. This accounts for 12.5% of all child deaths or passing.

The Surrey Multiple Disadvantage JSNA [50] highlighted suicide as being a leading cause of death of early mortality amongst autistic people, related to trauma and mental health needs. More information can be found in the People with Learning Disabilities JSNA [48] and All Age Autism Strategy. [155]

Impact

The data shows that people with learning disabilities, autism and neurodivergence are more likely to die from preventable causes and are at higher risk of death by suicide. Both LeDeR and the Surrey Child Death Review have published reports detailing improvements to address causal factors, which require a whole system approach. To support equity and quality of death at end-of-life, the reasonable adjustments flag, [51] has been launched in Surrey to identify needs and adjustments to support personalised care and the Victoria and Stuart toolkit to support quality of end-of-life care. [52]

5.5 Physical disabilities and sensory loss

In Surrey, 13.5% of the population reported having a disability, with severe hearing loss and physical disability being the most prevalent conditions. [53] Surrey’s Health and Wellbeing Strategy [13] gives further Surrey data regarding physical disability broken down by ethnicity.

Impact

The impact of disability on life term can be profound, impacting social determinants of health and experience of health inequalities, leading to poorer health outcomes and increased mortality rates. [54] Surrey data for end-of-life care for people with physical disabilities and sensory loss was sought, but not available. This does not reflect the level of need for people with physical disabilities and sensory loss at end-of-life, but that data collection, engagement and co-production is required to enable representation of need to support prevention of premature death and quality of death.

5.6 People experiencing multiple disadvantage

The Surrey Multiple Disadvantage JSNA [50] provides an evidence base of people experiencing multiple disadvantage within Surrey. Bridge the Gap defines multiple disadvantage as someone who is dealing with three or more of the following:

• Contact with the criminal justice system

• Mental health issues

• Substance use (alcohol or drugs)

• Homelessness or at risk of becoming homeless

• Domestic violence/ abuse

For groups where data isn’t available, it does not indicate a lack of need around death and passing, but a lack of available data for these groups.

People with experience of the criminal justice system Surrey has five prisons, including three women’s prisons HMP and YOI Bronzefield, HMP and YOI Downview and over and HMP Send and HMP Cordingley adult men’s prison and HMP High Down YOI and adult men’s prison. Bronzefield is the largest female prison in Europe and has a mother and baby unit on the site. Health and social care needs analysis of all prisons can be found on. [19]

As of 2025, 383 children under the age of 18 were accommodated in prison, both on youth justice grounds or for the safety of other on welfare grounds. Physical and long-term conditions are not more prevalent within prisons for children and young people, with the exception of epilepsy. The criminal justice system defines people aged 50 and over as ‘older’, due to age-related illnesses and frailty starting at an earlier age for people with experience of the criminal justice system compared to the general population. The prison population in England is ageing with an increase in the number of people aged over 50 from 10% in 2011 to 24% in 2024, with a further 15% rise expected by 2028. Health conditions and diseases associated with older age were previously rare in prison, this is highly likely to increase significantly as the prison population age increases. The impact of experience of the criminal justice system has been known to shorten life expectancy, with older people having worse physical and mental health than the general population. The challenge of multi-morbidity from multiple long-term conditions presents a significant challenge. In prison frailty begins earlier, with more than 40% of men over 50 years of age in prison being admitted to hospital in an emergency showing signs of frailty. End-of-life care is a relatively small and increasing need, this was acknowledged in the Dying Well in Custody charter and self-assessment tool in 2018, updated in 2024. [55]

Veterans and ex-service groups in Surrey report that there is a high number of ex-service people in prison, where the culture of reluctance in accessing support, as spoken of in the veterans’ section, will also need to be considered and the impact of their time serving on their health needs.

People experiencing alcohol and/or substance misuse The Surrey Multiple Disadvantage JSNA highlights the impact of alcohol misuse on premature death and years of life lost and is the biggest risk factor for death among 15- to 49-year-olds in the UK. For drug related deaths or passing, the JSNA found the most common contributing factors included bereavement. The audit found had experienced Adverse Childhood Experiences (ACE’s), which included bereavement. [50] Alcohol and substance misuse was reported during semi structured interviews as a barrier to accessing PEoLC, with PEoLC and mental health services requiring people experiencing substance and alcohol misuse to be accessing services to address misuse and to have capacity to undertake PEoLC or mental health interventions.

People experiencing homelessness The JSNA found 35% of deaths or passing for people recorded as being homeless were due to drug poisoning and 9.6% were alcohol specific. 87.3% of deaths or passing of homeless people were male. In the UK the average age of death for the homeless population is approximately 30 years lower than the general population. [50] Semi structured interviews highlighted people experiencing homelessness are not fully represented within primary care, secondary-care and hospice PEoLC caseloads. Despite that if the PEoLC surprise question were to be asked “Would you be surprised if this person died in the next six to twelve months?” the answer is highly likely to be no. People experiencing homelessness are underrepresented in system and organisation data, with qualitative data reporting high unmet need, with end-of-life care commencing at an earlier age to the general population.

Children and young people in the care system and people with experience of the care system - Social care has statutory responsibilities for supporting people with care and support needs. There is alignment between this function and supporting the needs of those experiencing multiple disadvantage. Public health data shows 39.4% of children residing in Surrey who died between 2023 and 2025 were in contact with social care. 16.3% were ‘known to social care’, 12.5% were a ‘child in need (including those with disabilities), 5.8% had a ‘child protection plan’ and 4.8% were a ‘looked after child’.

Impact

The data shows that people experiencing multiple disadvantage are underrepresented in organisation and system data and face barriers to accessing services, resulting in their accessing end-of-life care too late to support quality of death. Underrepresentation in electronic patient systems result in people experiencing multiple disadvantage not being identified as being at end-of-life. Also, where older age is used as a determining factor in end-of-life, this creates bias and unmet need as many people experiencing multiple disadvantage die prematurely.

5.7 Sexual orientation

In Surrey 90.66% people aged 16 and over identify as straight or heterosexual, 1.17% as gay or lesbian, 1.05% as bisexual, 0.26% as other, 0.17% as pansexual, 0.05% as asexual and 0.02% as queer. Surrey has a lower proportion of residents who identify as LGB+ orientation than the southeast or England as a whole. [56]

Census 2021 national cause specific mortality data according to sexual orientation found there was a 1.3 times greater risk of death from any cause for people identifying with an LGB+ orientation. [57] Marie Curie has found that some LGBTQ+ people access PEoLC services late or not at all, due to fear of discrimination. They report fears that their partner, or people who are important to them, will not be involved in decision making, that professionals will not ask relevant questions due to feeling uncomfortable. Or that they will be mis-gendered or have a loss of identity if they are no longer able to care for themselves. [58]

Impact

Data regarding sexual orientation and end-of-life care was not available. Given the increased risk of premature death and fear of stigmatisation or discrimination in accessing end-of-life care services, inclusion of sexual orientation within datasets would enable addressing any health inequalities and unmet need.

5.8 Religion

The Christian population is the largest religious group in Surrey; however, this has decreased from 62.8% in 2011 to 50.2% in 2021. A higher percentage of people reported having no religion in 2021 at 36.3%. Non-Christian religions represent 7% of Surrey’s population, with Muslims representing 3.2% of Surrey’s residents. [59]

Religious practices around death vary according to the faith and are interlinked with cultural practices. The 2011 census data found that ethnic diversity was present in all religious groups, though the variation differed between religions. Cultural variations are likely to exist within each faith group. [60]

Surrey representatives of the Gurkha and Nepali community discussed Buddhism, Hinduism and Christianity being prominent religions. The unifying cultural practice for Nepali people is to not discuss death or dying with the person who is at end-of-life. Symptoms at end-of-life are discussed and how they can be managed, but not in the context of dying.

For people of Jewish faith, Surrey representatives discussed death being managed by the community, including the wider community in London, alongside asking for support from external services when needed. Access to burial grounds is vital, as is the need to have a death certificate signed promptly, with the funeral preferably taking place within 24-hours.

For Muslim people, according to Islamic law, the deceased must be buried as soon as possible. Surrey Muslim representatives spoke of the challenges in obtaining death certificates in a timely manner to enable swift burial.

Impact

The data shows that Surrey has diverse religions, cultures and practice at end-of-life. SMEF Speaking for Ourselves and ACCESS reports demonstrate personalisation of approaches are required to ensure inclusion of religious and cultural practices at end-of-life, which is discussed further in the JSNA. [61]

5.9 Veterans

The Armed Forces JSNA details the needs of our armed forces and veterans within Surrey. [62]

Armed forces representatives spoke of veterans and people in military service not wanting to ask for help, only when the person is seriously ill will they seek support. For those serving, each regiment will have welfare committees to support service people in accessing support. The unit officer, usually a captain or a major, will be welfare trained and offer initial support. All support is confidential and all issues are brought to the welfare officer. If serious life-limiting illness occurs for the serving person or their family while they are in active service, the person will be returned home as soon as they are able to be released and extracted. Units have regular medical checks ups and medical teams while on service. For any serious medical issues, the person will be flown back to major injuries units or NHS services. Headley Court used to be the main military rehabilitation centre, which has since moved to Queen Elizabeth rehabilitation centre. Every serving person is offered a discussion about end-of-life prior to being deployed. If death or passing occurs while still serving, the serving person would be repatriated if this is they preference.

For veterans or ex-service people, the Royal British Legion provide support for families in accessing funeral support and attendance of the persons unit at the funeral. Support varies at end-of-life and is dependent on charitable services. Following death, the family of the veteran or ex-service person will be asked to leave military accommodation.

Service people have access to specific apps to support them accessing care through the NHS and community services. General Practice federations are working on veteran friendly GP and care-home initiatives to identify and support veterans with their needs, with 75% of care-homes going through the process of being accredited. The scheme puts in place training to understand the needs of veterans or ex-service people and identify them using SNOMED codes within electronic patient record systems.

Gurkha veterans have access to the Gurkha Welfare Advice Centre (GWAC), located in Salisbury and Aldershot, with the Aldershot team serving Gurkha veterans across Surrey. A high number of Gurkha families reside in Aldershot on the Surrey border and Camberley border. The estimated total of Gurkha veterans living in Surrey is 1,200.

The below gives details of categories of cases held by GWAC in March 2026. The most complex cases include Gurkha veterans and widows requiring hospice support, particularly those living without dependents. Repatriation of the body following death, passing, which requires obtaining voluntary donations to meet costs. GWAC supports family members with funerals, working closely with the Department of Work and Pensions, local authorities and communities. When a Gurkha veteran dies, the wife of the deceased is contacted by GWAC, who supports with funeral arrangements and accessing benefits.

Key barriers to support include health literacy and a lack of awareness of services or understanding how to access support. The language barrier is a further barrier to accessing and engaging in support, with lack of awareness of cultural practice for Nepali people at end-of-life. Many elderly Gurkhas would prefer to be repatriated to Nepal at end-of-life. However, veterans are unable to access public funds, and private or charitable funding is required to support. There are further difficulties if the family of the deceased has settled or are wanting to settle in the UK and would prefer for the deceased to not be repatriated. For veterans and ex-service people who have emigrated to the UK to serve, including Gurkha’s, Hong Kong military units and Fijian veterans, leave to remain differs depending on the unit. [63]

Impact

As discussed, cultural barriers to accessing support exist, with veteran culture being to not ask for help. When combined with the diversity of ethnicities, cultures and religions of veterans in Surrey, this presents inequalities in accessing support, particularly with the additional variation in leave to remain for veterans who have moved to the UK to serve from overseas. Veterans are represented through the digital-flag system where organisations have signed up to the scheme. However, as discussed, veterans may also be experiencing other forms of multiple disadvantage such as experience of the criminal justice system and alcohol misuse, which may create barriers to accessing services.

5.10 Data of social determinants of health

In 2025, the housing affordability ratio in Surrey local authorities ranged from 9.8 to 15.7 times the median salary to afford a median priced home. [64] Access to affordable and appropriate housing is one of the key social determinants of health and is an important factor in peoples’ experiences at end-of-life and bereavement. [65]

For council or housing association homes, if the person named on the tenancy dies or passes, the succession of the bereaved person to take on the tenancy depends on their rights. In the case of housing for a family where their child has died or passed, the needs of the family will be re-evaluated, and tenancy of the property may not continue. [66]

Data regarding the impact of education, environment, travel and employment and sanitisation on end-of-life care outcomes is not available.

6. Key themes in end-of-life care provision

6.1 Overview

This section presents findings from qualitative analysis of end of life care across Surrey, drawing on interviews with relevant stakeholders. Twenty-eight qualitative semi-structured interviews with 37 stakeholders were conducted to identify both established areas of good practice and potential areas for improvements within end-of-life care provision. Responses from 28 interviews were analysed using reflective thematic analysis.

End of life care is shaped by a complex interaction of system structures, workforce capacity, service provision, and individual need. The analysis demonstrates that delivery of care is not determined solely by individual services, but by how effectively the system is coordinated, signposted, resourced, and designed to respond to increasing complexity.

The themes presented below reflect both the frequency of issues raised across interviews and their impact on care delivery and experience, with particular emphasis on how system design shapes outcomes for individuals and families at the end-of-life.

6.2 Table of themes

6.3 Description of themes

1. System coordination is emerging, but fragmentation remains across the end of life care pathway.

System coordination is one of the most prominent themes across the data, with a high number of interviews highlighting the impact of fragmented systems on care delivery. While there is evidence that whole system coordination is emerging, this remains incomplete and inconsistent. Professionals described a system where collaboration can depend on local or informal relationships rather than consistently established structured pathways. Where effective coordination exists, it is often perceived as transformative, particularly when services are able to work across organisational boundaries. As one professional reflected on the coordinated IT systems which enabled shared patient notes, “that was a real game changer for us when we got it with [the hospice]. And I would imagine for both ways, because you could just see what was going on across those services” (005 006).

Further examples of coordinated care were identified in paediatric services where multidisciplinary approaches were described as embedded into practice, “when a patient’s entering end-of-life, we have another MDT [multidisciplinary team], which we do with the GP and the POSCU (Paediatric Oncology Shared Care Unit) and community services to discuss provision of care for the individualised care… that’s a standard practice that we’ve done for a very long time…that’s worked very well. We [also] bring in the psychology support” (024). However, such examples were not consistently reported. Coordination of care was described as being undermined by variability in practice across multiple professionals and service providers, “working in the community you need… flexibility… to increase that [medication] dose based on your clinical judgement… the acute hospitals… they prescribe a set dose…we have nowhere to go with that... GPs… will give us ranges because they know that’s where our expertise lies” (005 006).

Variation across geography reflects differing local models, highlighting opportunities to strengthen equity of provision. The availability of services, including community support, hospice care, GPs and specialist input, differs across areas, meaning families can receive different levels of support depending on where they live. For example, “a patient…has got access to very different…support and we’re talking about voluntary and hospice…but also GP practice, what pharmacies deliver… change from road to road…which is very difficult for our service to keep on top of” (005 006) This inconsistency is challenging for professionals, with one stating, “I do really struggle that across Surrey, the offer is different.” (020). Inconsistent processes further compound this variation, particularly within primary and community care, where “some places can get hold of medicines… others seem more reluctant… sometimes it seems that GPs are more likely to push back… and that can vary from area to area” (023). 

Structural variation across geographies and providers further intensifies this complexity. Services operate across multiple organisational boundaries that do not align, “everything is so disjointed… we cover two different ICB[s]… each of them are doing things very differently.” (025). Fragmentation also reflects the way services are organised, with systems often structured around organisational and geographical boundaries rather than patient need. As one participant described, “services are built up around buildings, and ICB and... county council lines… They’re not built up about the individual and it needs to start from actually the patient and how their pathway works for them rather than who lives across which border” (025). This structural misalignment contributes to a lack of patient centred coherence across the system. 

System complexity can reduce clarity of pathways, roles, and accountability, indicating the need for clearer alignment. Professionals reported challenges navigating a complex system, particularly at the interface between multiple services, where “Families navigating transfers between care settings including home, hospital, care-homes, or hospice units can feel unsupported at key moments, especially if communication between services is unclear” (019). This complexity requires improved coordination across the system, with participants emphasising that “I think it's about that kind of communication across the system and people working together and working in a really proactive way” (022). In practice, a lack of alignment can lead to inefficiencies and duplication, in one example it was reported that “it was duplicating work because they were running two ways of working… so they were kind of doubling up on their capacity” (022). Strengthening communication, integration, and proactive collaboration across services is therefore essential to improve continuity of care and reduce duplication.

Opportunities for clearer leadership and coordination were identified as potential solutions. A more structured approach could improve clarity and access, for example through “a more joined up approach… [where] a provider says… we’re going to lead on this section… which would make it clearer for the people of Surrey.” (011 012).  Strengthening links between services was also seen as necessary, particularly where pathways are currently weak or informal. Setting up improved governance systems using a network approach has been proposed as a way of improving coordination and efficiency across healthcare providers, “palliative care needs an operational delivery network with clear pathways and support of education and training and governance… that’s what currently missing to support transition between primary care, secondary and specialist” (024). This was also expressed by providers of psychological support for people with mental health needs, including those at end-of-life and their families, “we could definitely strengthen the pathways to specific services if they were out there” (036).

Digital infrastructure is central to safe, informed and joined‑up support, but remains inconsistent and complex across the system. Effective information sharing is critical to ensuring continuity of care, yet current digital systems are often fragmented, with limited interoperability between organisations. This creates inefficiencies and risks at multiple points in the care pathway. As one participant described, “you’ve got different paperworks in different areas… a note system that doesn’t talk to each other… you can spend hours trying to find out more details” (025), illustrating the practical impact on coordination. Although across children’s services, professionals are finding ways of collaborating to benefit supported families, “an e-mail trail that notes are written on...can be copied and pasted... onto the individual systems. So the same notes are being written. And if anybody needs to add anything, that's the same, which I think is really good practice rather than having two different sets of notes from one visit” (020). There is recognition that improved digital infrastructure and capability could significantly enhance coordination. Developments such as shared care records particularly with ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) forms are seen as key enablers of integrated working, with initiatives aiming to create “the one source of truth… [so] everyone can access that record… [and] people don’t have to redo their ReSPECT form” (022).  However, such systems are not yet universally embedded or consistently accessible across all providers, limiting their overall effectiveness. Breakdowns in digital communication can have particularly significant consequences for families where inaccurate or delayed information sharing leads to distressing experiences. For example, “something slips through the net… text messages from A&E (accident and emergency) to a mum whose baby has just died in A&E asking her to rate her A&E service” (015 016 017). These experiences highlight how fragmented digital systems can undermine both the continuity of care and psychosocial support for families.

Pathways and access to mental health provision for people with life-limiting conditions can be variable. Some mental health services offer ongoing support, “our service [talking-therapies] is open to people with life-limiting conditions…supporting them to come to terms with the diagnosis, looking at pain management, adaptation…changes in role” (011 012). In contrast, others indicate that although they are able to support individuals living with long-term health conditions, a terminal diagnosis can affect eligibility for interventions, “CBT (cognitive behavioural therapy) is applicable for those living with long-term health conditions…for someone that maybe has a terminal diagnosis… [they] would fall outside of the scope of our service” (013). Such discrepancies in eligibility criteria create uncertainty in which services are accountable for providing support.  Furthermore, access to highly specialist clinical input, such as psychiatry for paediatric patients, is highlighted as an area of concern, “we have limited access now to psychiatry, which is a really big issue” (024). Participants identified that for patients receiving palliative and end-of-life care, managing mental wellbeing alongside physical health is important (030 031 032 033), highlighting the need for services to have clearly defined pathways to access appropriate provision.  

Commissioning and funding structures play a central role in shaping services.  Differences in funding models, service specifications, and organisational priorities contribute to variation in provision and limit the ability to deliver equitable joined‑up care. Participants highlighted the importance of commissioning in enabling system coherence, including, “we obviously need to look at the commissioning in terms of our service provision for end-of-life care, the sustainability of the hospices… commissioning of continuing health care and making sure that is consistent across the patch” (022). Within Surrey, an example of valued practice is the funding of some specialist services, “the ICB (integrated care board) funding specialist services and owning that I think is really important to recognise and I think that should be acknowledged and valued because it isn't funded elsewhere and I think we need to identify that” (024).  Nevertheless, the impact of variation in what is commissioned has been identified as directly affecting patient care, “you want to be able to provide the same service for any child within our area… that’s down to funding of different teams and what you can provide out-of-hours” (023), and, therapies team have physios and occupational therapists… they no longer provide care in homes for palliative care due to costs  (030 031 032 033). 

There is also tension between how systems are funded and delivered and the flexibility required in end‑of‑life care. Standardised approaches can limit responsiveness to individual need, with some provision described as “quite regimented when actually end-of -life care requires a bit more flexibility” (005 006). Emerging wider system developments, such as neighbourhood models and community-based approaches in keeping with the NHS ‘Ten Year Plan’ are viewed as promising but not yet clearly defined in practice, “it’s [not] really quite yet understood… what does a community hub look like? I don’t think that’s really clear for paediatric palliative care” (024). Highlighting the lack of clarity of how future commissioning will shape end-of-life care under the evolving NHS operating model. 

Overall, the theme suggests that fragmentation is a key driver of inequity and inconsistency in end of life care. While examples of effective coordination exist, these are not yet systematically embedded across Surrey. Support is therefore shaped less by individual service quality and more by how the system is structured, commissioned, and coordinated.

2. Equity, inclusion, and access to end-of-life care are recognised priorities shaped by system design and complexity.

Equity, inclusion, and access emerged as a strong cross cutting theme, with consistent evidence within interviews. Across the data, inequity is not described as the result of intentional exclusion, but as a consequence of system design, capacity, and understanding and responding to complex and diverse needs.

Increasing patient complexity influences end-of-life care. Professionals described cases where patient needs are shaped by overlapping clinical, social, and environmental factors, making them difficult for existing services to respond to effectively. As one participant reflected, “the cases we've seen locally where things don't go right, people have very complex situations and there's sort of multiple things going on in terms of their home life and clinical condition… it’s more about the complexity of it as opposed to protected characteristics” (022). This is further compounded by structural constraints, including limited workforce capacity to meet increasing needs, “the complexity of patients, the acuity, I guess, has increased. The numbers of people coming in have increased... but our workforce hasn't” (014), meaning that proactive, tailored approaches are difficult to sustain, with systems often operating in “that kind of firefighting mode” (022).

Awareness of inequities is growing, with improved data and knowledge of services offering opportunities to better understand and address gaps. Inequitable access to end-of-life care is described as unintentional but can remain hidden. Participants recognised that while access to end-of-life care is likely uneven, there is insufficient data to fully understand or address it. As one professional noted, “we didn't have the demographic data to show… we all kind of anecdotally could see that we were probably not reaching in an equitable fashion… there’s been a cultural shift… around making people aware of the importance of the data collection” (025). Data is also important to “identify the gaps… looking at outcomes and working out actually what works and doesn’t work for the services that we’re offering to really understand it” (024).

Inequities are also created when knowledge of provision and navigating services is challenging for both families and healthcare professionals. Although multiple services exist to support end-of-life care, they are not always visible or easy to access. Participants highlighted the need for “consistent system awareness and signposting: families and some professionals are not always aware of available hospice, charity, or community support” (019). Another professional emphasised the importance of “looking at what's already in the community, working with the charities that are already out there” (025). There is a clear need to map resources and support services to facilitate clear pathways and signposting for both healthcare professionals and families. One participant stated, “making it easy… grouping resources together... but unless you actively go and look for them… and you're quite proactive, you probably don't even know anything exists... You just don't have time to search through the internet.” (009). This exposes the accessibility issue with the onus on individual families and healthcare professionals resulting in inequity.

Inclusion health groups may experience barriers, highlighting the need for more tailored pathways. Marginalised and minority ethnic communities, people experiencing homelessness, those within the criminal justice system, individuals who are neurodivergent, individuals with learning difficulties and complex social needs and others are not intentionally excluded, but systems are not structured around their needs, resulting in gaps in care. This is described in practice, with one participant stating that “the homeless completely fall in the gap...[and] they do die earlier” (026), while others highlighted that “complex, homeless, isolated, [and] excluded… aren’t really understood” (018). Structural barriers also affect access to care environments, for example, there is lack of support to take a prisoner at end-of-life into a nursing home or a hospice because of their conviction even though they do not pose a risk (001 002). More broadly, this reflects a wider issue that services are not deliberately inequitable and there is lots of good will but there is the need to understand different communities and tailor services (034). Nevertheless, acknowledgement and identification are only one step in the process, “there's so many inequalities… where do you target it? And of course it needs to be funded as well… I think it's about prioritising where are the needs and of course the needs are different in each population…and to be really responsive to that and adapt it while still adhering to what’s core to what we do” (035).

Cultural and communication factors further shape access and engagement.  Participants recognised that services are often delivered from a provider perspective rather than being co‑designed with communities. As one participant reflected, “we don't know what we don't know about how they would like their services to be run or to be provided to them... On an individual clinical level, we'll adapt and ask them what they think they need from us, knowing what we can provide, but I don't think that we are providing necessarily support in a way that they would find it helpful.  We're doing it in a way that we think it is [helpful]” (024). Cultural differences in how death and dying are understood and discussed also influence engagement, with recognition that “it’s very different for some members who don’t talk… about death and dying… how we introduce our services and provide that provision versus others who want to be far more upfront” (024). This highlights the need for greater flexibility and cultural sensitivity in service design and delivery.

Where services are present, language barriers can further restrict access. One participant highlighted challenges in adapting services to meet linguistic needs, noting, “a much higher volume of non-English speakers accessing healthcare… Finding ways to communicate…I think it’s improved. We’ve got various ways of doing that, but it does make it much harder… people don't get the same level of attention and attention to detail with their care” (014).

Trust and relationship building with communities are central to inclusive end-of-life care. Relational, person‑centred approaches are particularly important for engaging groups who may be excluded from traditional pathways. For example, within homelessness services, “building up that trust and confidence with the individual… so they will engage” (018) was described as essential. Participants also highlighted the need for co‑production, recognising that more inclusive models of care require direct engagement with underserved groups to design services that meet their needs effectively (018, 029, 034). One hospice discussed offering services that align with the need of families and communities, given that the women in your community care for the people who are dying, would it be useful to have a session on care or pressure ulcers (034).

However, there is evidence that even where targeted provision exists, awareness and integration remain limited. For example, participants noted that support for specific communities, such as “Gypsy, Roma, Traveller communities… [exist], but I don't know enough about it” (022), indicating that provision alone does not ensure access without system‑wide awareness and integration. Furthermore, measuring and demonstrating the impact of important relationship building can be difficult, “what do we mean when we say we’ve reached more people? Because it’s not just about the clinical activity, there’s so much more. It’s almost immeasurable… if somebody has a conversation… how do you capture and measure that?” (035).

Overall, this theme highlights that inequity is affected by system design, including how services are structured, resourced, communicated, and adapted to need. Addressing these challenges requires proactive, system‑level responses including improved data, greater cultural competence, co‑design with communities, and a shift from service‑led to person‑centred models of care, rather than reliance on service availability alone.

3. Workforce capacity, capability, and sustainability shape care quality

Workforce was consistently identified as a major factor influencing the quality and experience of end‑of‑life care, with strong and frequent evidence across interviews demonstrating the impact at both system and individual levels. 

End‑of‑life education, delivered by specialists, is necessary to build a confident and competent workforce, but it remains structurally underfunded and unevenly distributed. Staff across services reported variable levels of training and preparedness, particularly outside specialist teams. In some areas, education is largely informal or “on the job,” with limited structured pathways. For example, “there isn’t any specific education for palliative care pharmacists” (023). Similarly, services working with complex palliative populations described gaps in key training, noting “none of the staff have got trained in end-of-life conversations… it’s not something that we’ve been able to support staff to be skilled in” (018). This lack of training directly affects confidence, knowledge and capability, with some professionals described as “scared of talking to young people with cancer” (026). 

While there are examples of strong educational provision and innovation across the system, “we have a dedicated researcher… she makes sure that the education we deliver is based on… current best recognised practice” (029). Nevertheless, these remain inconsistent and often dependent on local initiative or charitable funding. Participants highlighted the need for a more coordinated, system‑wide approach, with education and training “done on a more… network approach… so it’s consistent” (024). Funding constraints further limit access to training, with providers noting that “we can put programmes on… [but] people just don't have [the funding] anymore… everything is being cut... while it was free, people came and as soon as we tried to roll it out with the cost attached to it, they backed off... So that was incredibly frustrating because it had evaluated very well” (029).

Workforce capacity influences the experience of end-of-life care for families, highlighting the importance of strategic planning. Increasing demand, rising complexity, and workforce shortages mean that staff are often unable to provide the level of care they would wish to deliver. This is particularly evident in community settings, where services must prioritise and manage competing demand. For example, “we do have a night service… but it will all depend on how many other calls they've got… they have to prioritise” (005 006), reflecting constrained responsiveness.

Across settings, there is consistent evidence that workload and patient complexity have increased without a corresponding increase in staffing. As one participant described, “our patient caseload is just so much higher than it was 5, 10 years ago and we still have the same amount of staff… we can't give as much time to patients as we would like to” (014). This creates a gap between expectations and capacity, where staff feel unable to provide the relational, personalised care that is central to end‑of‑life support “there are times where everything gets spread a little bit too thin”  (023). Workforce gaps also create inefficiencies and additional pressures within the system.  The absence of key roles such as prescribers can delay care “children's hospices differ to adult hospices... because at adult hospices they have prescribers on site. Children's hospices don't tend to have as many prescribers” (023). Access to non-medical prescribers is seen as a key measure to support end-of-life care, “most of our nurses are non-medical prescribers… it is important that we are able to lead on that and make those decisions” (014). Although support for them is not readily available, "we struggle… in getting support for our nurse prescribers because we don’t have any doctors within our service” (005 006). Furthermore, as one professional pointed out, limited workforce resources are more likely to be allocated to patients with cancer while those with “respiratory disease... might be... plodding along at home... can progress... and become very sick very quickly. And they don't really fit into any team at the moment... it would be great to be able to offer... [community care] to more people with long-term conditions that are not cancer” (014). Similarly, limited workforce capacity in psychosocial support for children and young people affects service continuity and responsiveness, with delays in specialist input where services operate intermittently. This can result in “a big lag time… it can be a couple of weeks before they actually catch up with anyone again” (009). 

Staff wellbeing is increasingly recognised as essential to workforce sustainability and quality of care, reflecting the emotional intensity and sustained pressure of working in end‑of‑life care. Professionals described the significant emotional labour involved, including managing complex situations in isolation, with “clinician[s] being on their own in that patient's home managing that syringe driver. It’s not like being on a ward having another nurse there to check the drugs…  it’s quite a lonely place… making big decisions regarding their care” (005 006). The emotional burden of the work is further compounded by the emotional intensity of providing end-of-life care, with staff “carry[ing] a huge amount of emotional… baggage of others… We have difficult conversations every day… It’s hard on the workforce” (014).

While some services have implemented formal support mechanisms, such as supervision and access to psychological input, these are not consistently available or embedded. Informal peer support remains a key coping mechanism, but is not always sufficient, with participants noting that support is often “informal… it doesn’t really count as anything, but... everyone does support each other” (014). There is also evidence of a cultural barrier to prioritising wellbeing, with a persistent expectation to be very responsive, “The team here get really upset if they can't respond to somebody in two hours. I'm like, that's quite reasonable. We're not an emergency service” (035). Healthcare professionals continue working despite emotional strain, “there’s a bit of a thing of just get on with it” (005 006), and a recognised need to reinforce that “it’s okay not to be okay” (005 006). In some sectors, particularly those working with complex or disadvantaged groups, staff wellbeing is further challenged by exposure to trauma and limited specialist support. For example, homelessness services described the impact of client deaths or passing as “really traumatising for the staff” (018), alongside limited training and support in managing these situations. Some groups lack formal pathways and are awaiting updated guidance to be able to implement support, “the guidance is being rewritten and will be republished in 2027 with an update… it’ll become mandatory that there’s psychological support for staff…, but it’s not there at the moment” (015 016 017). 

Across the data, there is a strong indication that workforce sustainability is fragile, “the burden and challenges around that are staff workload, training, burnout, resilience... [there] is a shelf life to palliative care, how we keep people in the business... that's a thing that we haven't quite understood very well.” (024). Recruitment and retention challenges, combined with an ageing workforce and insufficient pipeline of trained professionals, present a significant risk. As one participant noted, “We've got a very ageing population in our community service with, you know, retirements, really coming at us over the hill. And we're just not seeing those people coming through in the same ways that we used to. So there's a big strategic risk in terms of the workforce” (035).

Without sustained investment in training, workforce capacity, and staff wellbeing, the system’s ability to respond to increasing demand and complexity will be further constrained. This includes not only expanding workforce numbers, but also strengthening capability, protecting wellbeing, and enabling staff to deliver the relational, high‑quality care that end‑of‑life care requires.

4. Hospices, community nursing, and social care are central to the function and stability of end-of-life care.

Hospices, community nursing, and social care were consistently identified as essential foundations within the end‑of‑life care system. Across the data, these services form the core infrastructure enabling care outside hospital settings, often absorbing pressure and filling service gaps from the wider system.

Community and social care services play a key role in enabling choice at the end-of-life. In particular, community nursing was repeatedly described as the backbone of care in the community, providing continuity, coordination, and responsiveness. One participant described how community teams act as the central point of coordination, “We work very closely with hospices and the GPs around end-of-life… GPs may prescribe the medication, but day‑to‑day, if there’s a problem with that patient, they will phone our coordination centre and we will coordinate the response” (005 006), reflecting the complementary roles of general practice and community nursing in managing care across multiple providers. District nursing teams were widely recognised as leading the end‑of‑life care, with “the district nurses who look after a lot of… probably do the majority of the end-of-life care for people living in their community” (022). Participants also emphasised the vital yet under resourced contribution of social care, noting that the provision of care packages is essential for delivering care at home, “we’ve not got enough nursing home beds or hospice beds… it’s got to be at home… carers that do those amazing jobs to keep people at home… we’re going to have to invest a lot more in that” (025). 

These key services make it possible for people to remain at home at the end-of-life. Evidence suggests that where community provision is strong, more people are able to die in their preferred place, with one participant noting, “compared to the national average, we have more people dying in their home… in the place that they choose in the community as opposed to in hospital… and I think it is a result of the frailty work that we do… in the way that the district nurses approach caring for people in their home” (022). Areas of good community practice also span children’s community nursing teams, “nurses... are very good for advocating for children and families... a GP had suggested maybe this child should go back into the acute for IV antibiotics and one of the nurses, absolutely not. It's been expressed they need to be at home, that's where they want to be... supporting their wishes” (020). However, this is highly dependent on capacity and local provision, “we are in a very lucky position where we can offer a 24-hour service… it does seem… there are certain ones that don't do out-of-hours and can't offer the same end-of-life opportunities” (023). Even where 24/7 services exist, they can be limited in their availability or provision “if a child dies overnight or out-of-hours, if we have nobody who can verify the death, sometimes it's a long time before maybe an out-of-hours GP will come out because it's not a priority” (020). This constrained capacity means that support is not always immediate or sufficient, particularly during periods of high demand or out-of-hours care. 

The reality of dying at home was also described as more complex than often anticipated. While it is frequently presented as a preferred option, achieving this depends on the availability of sustained, responsive support. As one participant  reflected “I’m a big advocate for dying at home, but you do need to know… what that actually means at 3 o’clock in the morning when there is nobody else there… if they’ve got two palliative patients, different ends of the patch, it’s going to take them a while to get to one or the other” (005 006). In practice, care at home can become increasingly difficult to sustain. As highlighted by one professional, “social emergency care is a big issue for families and then housing... a [paediatric] patient... struggled to go home... for end-of-life care because of the lack of safe housing... And there's just a real lack of responsiveness to it” (024), emphasising that the feasibility of home-based care depends not only on clinical provision but also on housing, care packages, and wider social support. Where support is insufficient, families can experience significant pressure, and expectations created earlier in the care pathway are not always aligned with what services can realistically provide.

Hospices provide holistic, family‑centred care and contribute significantly to the stability, delivery and coordination of end-of -life care. Their contribution extends beyond clinical care to include emotional, psychological, and practical support for patients and families. Hospice services were described as offering integrated, multidisciplinary care across settings, “including symptom management, emotional and psychological support, advance care planning, and therapies... with strong coordination between our teams, GPs, district nurses, and other community services.” (019). This holistic approach enables continuity of care and supports families through both pre‑ and post‑death experiences. Involvement of hospices is important and, in some areas, seen as a strength and well-coordinated, “In Surrey, in particular [hospice] we’re really lucky to work with colleagues… who don’t do anything without us round the table, particularly end-of-life care” (035).

Participants consistently highlighted that hospices fill gaps that are not fully addressed within statutory service provision, with one describing how they “fill a gap which isn’t properly funded by the NHS…  fill massive gap” (025). One example of this is in paediatrics, where the 24/7 out-of-hours provision is not consistently delivered through statutory services, “the lack of secured funding for the 24/7 community services. That’s an issue because it is currently funded partially or majority through the hospice charity… that’s unsustainable in the long” (024). In addition to direct care, hospices also contribute to wider functioning of the system through education, outreach, and partnership working. Their role in supporting system coordination is reflected in feedback that families experience care as most coherent when hospice services are involved, with “the only place they felt care to be coordinated has been the hospice” (035).

Despite their central role, hospice are themselves under significant pressure. Limited bed availability, workforce constraints, restricted statutory funding and reliance on charitable funding restrict their ability to meet demand. As one participant noted, “hospice beds are few and far between… they don’t have the funding or the staff to staff it properly” (014), meaning that access is not always possible when needed. Services are therefore required to prioritise, which can limit choice for patients and families and fewer are able to offer respite services in both paediatric and adult hospice settings, “We don’t offer respite anymore... people come in for complex symptoms that can’t be managed in the home setting... In terms of the end-of-life care... that is for people who we identify within... the last two weeks of life... We are not looking at long-term care... And this has changed... over the last 10 years... the intensity... the complexity of the people coming into the hospice for end-of-life care... the level of need has changed. Whereas... previously it might have been because that was the person's preferred place of care” (025).

Hospitals are the de facto place of death in a system under strain. While some people express a preference to die at home or in a hospice, this is not always achievable. Where community or social care support is insufficient, hospital admission becomes the default pathway. Participants described how system pressures create a cycle in which limited community provision leads to hospital admissions, “the provision in the community… is under pressure and that impacts on people being in hospital and then you can’t get people out of hospitals, then you get... more people in crisis at home. It’s like a vicious circle... And you get people coming into hospital because their community teams can't necessarily see them at home because they're seeing lots of other people” (014).

This is reinforced by practical constraints, particularly where care packages or social support are not available, with evidence that “people often get admitted to hospital when their package of care no longer covers their requirements… it would have been easier just to give them an extra two hours a day” (026). In such cases, hospital becomes the only viable option, even when it may not align with patient or family preferences. As a result, “quite a percentage actually end up being in hospital because the family didn’t feel they could cope any longer” (026).

The interview data also highlights that achieving preferred place of death requires coordinated input across services, including timely planning, community capacity, and social care support. Without each of these elements, even well-intentioned care plans cannot be realised. Although hospital care remains essential, its role as a default setting for end‑of‑life care reflects gaps elsewhere in the system rather than deliberate choice. However, where these components are in place and work effectively together, more positive outcomes can be achieved, as in this example, “so we're quite low actually for people dying in the hospital, which is positive” (022).

Overall, this theme demonstrates that hospices, community nursing, and social care act as key stabilising elements within the end‑of‑life care system. They enable choice, provide holistic support, and absorb pressure from other parts of the system. However, their ability to fulfil this role is increasingly constrained by capacity, funding, and variability in provision across geography. As demand continues to grow, these services cannot fully compensate for wider system gaps, highlighting the need for sustained investment and system‑level coordination to ensure equitable and effective end‑of‑life care.

5. Children, young people, and families require tailored approaches within end‑of‑life care

Children, young people, and families experience distinct challenges within end‑of‑life care, with specific service gaps identified across the data. While there are examples of strong, collaborative practice, these are not consistently available, and services are often not fully designed around the unique needs of this population.

Children’s end‑of‑life care requires integrated and bespoke services. Adult models do not translate effectively to children, whose needs are shaped by developmental stage, family context, and complex, often unpredictable clinical trajectories. Professionals highlighted that children frequently spend extended periods living with life‑limiting conditions before entering end‑of‑life care, requiring ongoing, adaptive support, as “although children are life-limited... they spend a longer period of time not at end-of-life” (023).

Integrated working between services is therefore essential to ensure not only consistent services but appropriate care expertise are available to children and young people.  Where it functions well, it significantly improves care quality and continuity. For example, professionals described strong collaboration between community children’s nursing teams and hospices, where “the hospice is really crucial to us… we’ve... worked really well together…to support these children and families at home” (020). This includes joint planning, shared learning, and coordinated care delivery. Similar good practice was described in specialist paediatric services, where structured multidisciplinary working supports continuity across care settings, including “a multidisciplinary team meeting once a month which has a religious leader, psychology, OT (occupational therapist), physio, and social work, and ourselves a specialist team to plan all referrals for palliative care” (024). As one professional working in the community described, “I think we work well with linking up with our local hospitals for the teens who… sometimes move into this phase, come into the community and then their acute teams are not really up to date... So [we are] keeping them in the loop” (020). This highlights the importance of ongoing communication and shared understanding across settings, particularly as care transitions from hospital to home. Such coordination helps ensure that expertise is retained, and that care remains responsive to the needs of children and families.

However, integrated working is affected by the complexity of young people and as stated by one participant, “the children are under so many different specialities” (023). Moreover, specialist services are needed to share their expertise to professionals who are less experienced in caring for a dying child, however they are not consistently available, for example, “to provide in-reach support into hospitals to do infusions and supporting wards and providing end-of-life care… the ward hasn't seen a death in five years and are very distressed. So, if the community services can reach in to provide expertise around how to set up a driver, while we're assessing the child, I think that that provision is fantastic and that doesn't exist in all areas” (024). 

The complexity and unpredictability of paediatric care, requires flexible and responsive approaches. Care delivery is further complicated by the rarity and complexity of paediatric cases, which reduces familiarity and confidence among generalist services. For example, “a GP in the course of their career is likely to come across one end-of-life child… in their practice... It's not like with the adults where a good proportion of your population are going to be end-of-life... children in that situation are far more rare, luckily. So it is quite difficult and sometimes we do have problems ... because GPs are reluctant to prescribe” (023). This highlights, how infrequent exposure limits opportunities to build experience and confidence, and leaves healthcare professionals less well‑equipped to manage the specific demands of paediatric end‑of‑life care within systems largely designed around adult populations. 

Furthermore, small numbers of paediatric palliative care patients within the wider system require adaptive approaches. One participant suggested a need for “a formalised funded network that actually provides governance, leadership… not just repeating everything in every hospital where they only see… small numbers of patients” (024). Differences in service infrastructure also contribute to this complexity, for example children’s services can operate under different prescribing and governance arrangements, where “the hospice is a bit of an odd situation whereby we don’t prescribe… if the child is in the community, we will then contact the GP and say, can you prescribe” (023), creating additional complexity and reliance on external services and professionals who are less experienced in supporting children at end-of-life. Moreover, managing sufficient staffing and services when patient trajectories are unpredictable is challenging, “you can never predict when children are going to go downhill… you can’t predict what your workload is going to be at any time. So that’s a little bit tricky” (023).

Gaps are particularly evident in provision outside core hours and across settings. Delivering responsive, 24‑hour care for children requires significant resource and coordination, which is fragile due to workforce capacity and the unpredictability of the end-of-life caseload. Some areas benefit from strong integrated provision, described as “the combined provision of hospice and community services to provide a 24-7 community on call… probably the best thing that we have because it provides meaningful choice and responsiveness of being able to put that together and I’m aware in other areas it’s not available and that really limits care and provision” (024),  where community nurses “buddy up with the community team from the hospice”  (020) to provide out-of-hours palliative and end-of-life care for children. However, this provision is not consistent across the patch. 

Where hospice involvement or specialist support is limited, both care quality and safety may be affected, and pressures shift to already stretched community teams, “If there was a situation that the hospice weren’t involved… this [24/7 provision] could be quite problematic” (020). This also places additional strain on community nursing capacity, as “the service would then take a big impact if I had two staff on call every night on top of their additional hours. That might be tricky to manage, probably not as a robust rota” (020). Participants emphasised that maintaining safe, responsive and equitable out‑of‑hours provision requires sustained investment, coordination, and stronger system‑level infrastructure, “to offer this, it needs to be a good service” (020). 

Families are best supported through compassionate, continuous and person-centred care. The importance of trusted relationships is evident in how services engage with families over time. Professionals emphasised the need for planned, ongoing and consistent involvement, including advocating for family preferences and ensuring care aligns with their wishes. A key aspect discussed in the data was ensuring families are supported through parallel planning, so the appropriate care and support can continue if their wishes or needs change, “parallel planning…  between us and the hospice as well, we always have that in mind about that change of decision [about place of care] potentially along the way” (020). This is supported by structured approaches to continuity, such as multidisciplinary working that follows families through the pathway that continues to bereavement support.

The complexity of paediatric end‑of‑life care is further reflected in the emotional needs of families at key timepoints. In one circumstance they were described as needing support where a child transitions between active treatment and palliative care, “there’s a flip of the coin from active to palliative care… and getting that right is difficult… people aren’t always ready” (026), highlighting the need for sensitive, continuous support throughout the care journey. One service explains the needs to be proactive in support for families, “what’s important is that people don’t… get referred into our service as such. We just appear… so that is really important… it’s not something that the parents have got to actively pick up the phone and ring… you’re just there… feedback from parents is how important that was to them” (015 016 017). Relational care was consistently described as central to positive experiences, particularly in paediatric contexts where families are navigating sometimes prolonged and emotionally complex end-of-life journeys. Support often extends beyond clinical care, encompassing advocacy, coordination, and emotional presence. This is reflected in accounts of professionals providing highly personalised support, including “holding a family's hand, helping them hold their child… after their child’s died, giving them the confidence to hold their child, supporting them while their child goes down to the mortuary” (015 016 017), illustrating the depth and continuity of care and support required.

Overall, this theme highlights that children’s end‑of‑life care requires a system specifically designed around the needs of children, young people, and families. While examples of effective, integrated, and relational care exist, these are not yet consistent or universally accessible. Addressing these structural gaps will require system‑level changes, including improved integration across services, investment in specialist paediatric provision, and a stronger emphasis on continuity, early intervention, and family‑centred care.

6.4 Notes on data and analysis

While this chapter provides helpful insights, there are some important limitations to consider:

• The qualitative data reflects the perspectives of those who participated in interviews and may not fully represent all population groups and service provision across Surrey.

• Not all professionals interviewed were specialists in end-of-life care, so their responses may reflect a general view rather than detailed experience. In some cases, discussions only touched on end-of-life care briefly.

• The interviews were not conducted in a uniform manner. Twenty-two were carried out with a single participant, while the remaining six involved between two and four professionals. This variation may have influenced the nature and depth of the information shared.

• Not all interviews were fully transcribed. Of the 28 interviews, 12 were recorded as summaries rather than full interview transcripts. As a result, some detail may have been lost.

• The analysis reflects system and professional perspectives. While this provides valuable insight into system functioning, it may not capture the full diversity of end-of-life care provision and experiences.

• Finally, end-of-life care is influenced by a wide range of social determinants, including housing, income, and community support, which are not always fully captured within service based data.

A note on reflexive thematic analysis:

A reflexive thematic analysis1 approach was used when analysing the qualitative data. Consequently, the themes outlined should be understood as interpretative, representing how patterns within the dataset were identified and meaningfully constructed. These interpretations are inevitably shaped by the broader context within which the research was undertaken. The data are drawn from a small sample of professionals working within Surrey involved in end-of-life and bereavement care. As such, the findings represent one component of the overall evidence base and should be considered alongside insights from existing literature and other data sources, to develop a more comprehensive understanding of needs across end-of-life and bereavement care in Surrey.

6.5 Summary

Across all five themes, the findings show good practice and examples of compassionate and personalised end-of-life care but also challenges around system design, access, and increasing complexity of need:

• The overall system structure and commissioning, not individual services, is the primary driver of what provision is available

• Fragmentation and inequity are closely linked and mutually reinforcing

• Workforce, hospice, social and community services are critical but under pressure

• Children and families require more tailored and integrated approaches

Consequently, high-quality end-of-life care depends on:

• Strong teamwork and communication across services

• Support in the home, hospital and community

• Clear and well-designed systems and pathways

• Fair and equal access for all

7. Hearing from service-users and residents

Qualitative data and insights have been gathered from a range of sources:

• VCSE surveys

• Hospice service-user groups

• Focus groups to hear from under-represented communities.

• Complaints and compliments (health and hospice)

• Case stories from people with lived experience (obtained from health, ICB and hospice sources)

• Healthwatch Surrey PEoLC report, including the voice of people with lived and living experience. [67]

Data gathering has been limited by the range of data available. Less qualitative data was available from NHS sources compared to VCSFE, with variable quality of data sources. Complaints and compliments were used, which included a higher weighting of complaints, which may not be representative of the experiences of people across Surrey.

Insights have been grouped under themes to support accessibility of the data. A full research based thematic analysis has not been completed to draw out themes from the data, due to limitations in data quality to support drawing of conclusions.

Compassionate care:

• The need for compassionate communication was discussed by some services users accessing care services and where there has been police involvement.

• Compassionate communication praised of hospices and child death team.

• The need for greater compassionate curiosity in practice, which is also highlighted in Child Death Review Partnership thematic analysis.

• Some people with lived experience spoke of the need for greater empathy from professionals.

Personalised care:

• The importance of cultural and religious inclusion in practice

• Reasonable adjustments not consistently made for people with learning and/or physical disabilities.

Communication:

• People did not always feel feeling listened to.

• People did not always feel heard.

• There is a lack of adequate translated resources and access to interpreters.

• People did not feel there was cultural and religious inclusion in language used by practitioners.

• The use of complex medical terminology is a barrier to understanding and awareness of care, impacting ability to engage and give consent.

• Communication of changes in prognosis, medication and the rate of change were not always clear, leading to anxiety and mis-trust.

• Variability in communication between health professionals and cross sector professionals, with some good practice mentioned regarding CCN teams and inconsistency/lack of communication mentioned between health teams.

Care in the right place:

• Feeling that support has not been proactive and supported in a timely manner.

• Delays in application for funding impacting timely care.

• Community visits were ‘uplifting and practical’.

• Service-users appreciate availability and reliability of hospice and health community services.

• Responsiveness of services is important to service-users.

• Preferred place of death important for all

  • Children and parents discussed the importance of the family and environment in choice of place of death.

  • Important to have parents/care-givers present at time of death and that death in a hospital environment required their having to choose which parent should attend and which should stay at home with any siblings.

  • Preference to be in a familiar environment at home, particularly if the child had a learning disability or for autistic children.

  • Some parents expressed that they preferred the hospice environment, as this enabled them to be parents have quality of time with their child and not having to focus on caring duties.

  • Adults expressing preference for dying in a hospice but not being able to access the hospice due to limited bed availability.

  • People from some ethnic minority communities expressed and preference for end-of-life to be in the home as part of cultural traditions.

  • People with disabilities discussed need for reasonable adjustments to enable them to receive end-of-life care in their preferred place. Or as a disabled carer of an end-of-life child, to have their holistic family needs met to enable death in the preferred place.

• Dying in a place which was not the preferred place of death caused anxiety.

Process following death:

• Waiting times for verification of death of concern for people of all ages. This is particularly concerning for those whose religious practice is to bury the deceased shortly after death.

• The coroner’s process was reported to be distressing for some families.

Access to medications:

• Improved access to end-of-life medications has been raised by families of both adults and children.

• Families and carers of older people have raised it being a significant challenge to locate medications and to collect them.

• Families of children have raised that locating and obtaining medication takes valuable time away for the parent/carer from being with the child at end-of-life.

• Families and carers of all ages discussed the emotional pain of seeing a loved one suffering from not having access to medications when needed.

Mental health support at end-of-life:

• People with life-limiting conditions at end-of-life not aware of mental health services to support with anxiety or depression in managing their condition.

• Mental health support not culturally inclusion. Bias of practitioners reported which did not support religious inclusion.

Co-ordination of support:

• Families having to navigate across Place or Primary Care Network commissioned community services for family members at end-of-life. Particularly where elderly relatives re-locate to family members residence to support end-of-life care in the community. Families reported difficulties in changing GPs and accessing DN services.

• Families of children and adults expressed difficulties in co-ordinating services and care. Such as taking bloods prior to cancer treatment.

Education, awareness and information of services and support:

• More information needed about the nature of the persons death and care environment.

• How decisions are made with the person

• Lack of awareness of services and support available and how to find it.

Health literacy presents a barrier, raised as a primary barrier by people from ethnic minority communities, people with lower levels of literacy, people with learning disabilities and people seeking asylum and refugees.

8 Provision mapped against national and local guidance

8.1 Local Policy and Guidance

Locally, Surrey Heartlands Health and Care Partnership (led by Surrey Heartlands ICB, now Surrey and Sussex ICB), formed the Palliative and End-of-life care Strategy 2020 to 2025. [68] The priorities aligned with the National Ambitions framework.

The Surrey Health and Wellbeing Strategy 2026 has updated priority populations and neighbourhoods, with recent inclusion of the needs of babies, children and young people as a priority and a shared understanding of prevention. [69]

All priority populations are likely to have lived or living experience of end-of-life, or being the carer, spouse/partner, family member or friend to someone at end-of-life. Particularly ‘Those with caring responsibilities’, ‘Those with long-term health conditions, physical disabilities or sensory impairments’ and ‘Those in the armed service, ex-service personnel, veterans and their families’.

8.2 National Policy and Guidance

Nationally, end-of-life care is guided by NHS England (NHSE), National Institute for Clinical Excellence, professional bodies such as the General Medical Council and VCSE organisations representing the needs of people with life-limiting conditions or hospice care, including Marie Curie, Hospice UK and Together for Short Lives. As of 2022, commissioning of end-of-life care services is an Integrated Care Board (ICB) statutory duty.

Key documents include:

• Government Fit for the future: NHS 10 Year Health Plan for England [70]

• NHSE Service Specifications for Palliative and end-of-life care 2023, adults and paediatric. [71] [72]

• NHSE National Palliative and End-of-life care Partnership Ambitions framework 2021 [73]

• NHSE Palliative and End-of-life care Statutory Guidance for Integrated Care Boards (ICB’s) [74]

• Neighbourhood Health [75]

• The Modern Service Framework [76]

• NHSE Universal principles for advanced care planning 2022 [77]

• NHSE Dying well in custody charter 2018 (updated 2024) [78]

• National Institute for Health and Care Excellence (NICE) guidelines and quality standards [79]

• Leadership Alliance for the Care of Dying People, One Chance to Get it Right 2014 [80]

• Priorities of Care for the Dying Person 2014 [81]

• GMC professional standard: Treatment and care towards the end-of-life: good practice in decision making 2010 (updates 2022) [82]

• Marie Curie National Guidelines for End-of-life care [83]

• Child Death Review statutory guidance [84]

• Together for Short Lives Strategy [85]

The NHSE National Palliative and End-of-life care Partnership Ambitions framework 2021, was developed in partnerships with national organisations across health, local authority and voluntary sectors. It sets out the national vision for collaboration across sectors at a local level to support palliative and end-of-life care. [86] The Government is developing a Palliative and End of Care Modern Service Framework for England, which is due to be published Autumn 2026. This will be aligned to the recently published Ten Year Health Plan, aiming to shit care out of hospitals and into the community. Enabling personalised, person centred care for people of all ages and their families and carers. [87]

The NHS England self-assessment tool is structured around the Six Ambitions for Palliative & End-of-life Care:

1. Each person is seen as an individual

2. Each person gets fair access to care.

3. Maximising comfort and wellbeing

4. Care is coordinated.

5. All staff are prepared to care.

6. Each community is prepared to help.

It is part of Surrey and Sussex ICB statutory duties to have a clear vision of how commissioned services deliver against the Ambitions Framework and are required to complete a PEoLC Ambitions Framework self-assessment, to describe the current state across Surrey and how the six ambitions translate into all care settings e.g. hospital, hospice, care-homes, prisons. [86] [88]

The Surrey Heartlands ICB PEoLC Strategy is aligned to the national ambitions. [68] The ambitions are as follows:

1. Everyone is seen as an individual, with care tailored to meet their needs and wishes.

2. Everyone has equal access to palliative and end-of-life care.

3. People are made to feel comfortable and their wider wellbeing needs are met.

4. Care is coordinated, with different services working together.

5. Staff have the skills and knowledge to provide the best care.

6. Communities come together to provide help and support.

8.3 Analysis of provision against national guidance

The Surrey Heartlands ICB Ambitions Framework all age self-assessment completed in 2025 demonstrates the majority of PEoLC Ambitions Framework measures are meeting level 3, limited achievement across one or two organisations only, with both ambition one and there scoring highly.

The following table summarises all age strengths and gaps in Surrey against each of the ambitions.

The following table contains analyses of health commissioning against the national PEoLC service specifications for adults and children.

Adults commissioned service analysis

8.4 National and local hospice strategies

Hospice UK is the national champion for hospice care, representing more than 200 hospices across the UK for adults and children. Their membership includes independent charitable hospices, two national PEoLC charities (Sure Ryder and Marie Curie) and charities supporting NHS hospice services. Their strategy for 2024 to 2029 has the three following strategic priorities: [89]

1. To improve equity of access

2. To enhance quality care

3. To achieve sustainability (financial and staffing)

9. The financial cost of end-of-life care

Due to improvements in healthcare and societal changes, people are living longer than before. In the wake of this demographic shift, there will be implications for public expenditure in the future, with project expenditure on health and care costs for an aging population expected to grow from 7.3% to 8.3% of all GDP.

The cost of PEoLC in Surrey is not fully known. Data is available for hospital based secondary and tertiary services costs. The cost of community healthcare is not fully known. PEoLC comprises part of community service care delivery and contracts, with data for PEoLC not currently extracted. Hospices funding is known as detailed in their annual accounts (links in section 4.2.2). However, hospice funding for specific service provision cannot be reliably extracted. Hospice funding is complex, with funding being received from multiple sources, NHSE grants, ICB and NHS contracts, ICB, NHS and local authority spot purchasing and charitable (donations, grants), with some services jointly funded and the majority funded through charitable funds. Hospice provision incorporates provision which is part of ICB statutory commissioning duties, local authority statutory duties and provision under ‘enhanced services’ in the NHSE PEoLC specification, which are expected to be funded charitably. [71]

Surrey Heartlands ICB Business Intelligence team Tableau dashboard data shows the cost of secondary-care (district general hospital and tertiary specialist hospital-based services) expenditure at end-of-life was £38,365,650 in 2024 to 2025 (see below). Data is not available for health community care services system costs. For Surrey’s hospices, 20% to 30% of the funding required to operate hospice PEoLC and bereavement services comes from statutory funding. The remaining 80% to 70% is raised from donations. Across the four adult hospices, the mean statutory income per annum is £2,562,500, with an approximate combined statutory income of £10,250,000. SSCH receives £3,500,000 approximately per annum for its services across Surrey, southwest London and northwest London.

Research by Marie Curie suggests that UK spending for people in the last year of their life, across health, social care and social security totals £22bn. More than half 53% (£11.7bn) of this total is spent on healthcare, equating to £18,020 per adult who has died or passed. Of the £11.7bn, 81% is used for hospital care (£9.6bn), with 56%, £6.6bn of that being spent on emergency care. In contrast, spending on community and primary care services represents 11% (£11.3bn) of health expenditure for people in the last year of life, with less than 4% (£414m) allocated to hospice care [90]

These findings are in line with the findings from the National Institute of healthcare Research in 2017, who found that healthcare costs in the last year of life were £19,051 per person, with acute hospital care comprising the larger proportion of these costs. Specialist palliative care, comprising of teams based in acute hospitals, community and hospices account for 6% of costs.

The researchers found that less 1% of the population dies annually, however they account for approximately 8% of NHS spending. Having adjusted spending for inflation, the researchers found the below predicted distribution of costs at end-of-life in 2024. [92]

When compared to informal care provided by the family or carers, the significant weighting of costs and work undertaken by the family and carers shows the weighting of care that is provided within the home environment.

The Marie Curie research found that in England in 2022/23, 44% of deaths or passing were in a hospital, 56% in the community (of these 28% were at home, 21% at a care-home and 5% in a hospice). 61% of those who had died had one of more emergency admissions in the last three months of life and spent 69% of time in hospital in the last six months of life, equating to 8.4 million bed days. A similar picture for place of death is seen in Surrey 39% of people died in hospital, 57% in the community (of these 27% in a care-home, 25% at home and 5% in a hospice) and 1.9% other. [93] This is also reflected in the hospice data in appendix 3 showing a greater percentage of deaths within the community.

Currently a minority of people who may benefit receive specialist palliative care in the UK. Across the UK, specialist palliative care supports over 20,000 people so they can die outside of hospital each year, saving approximately 1.5m hospital bed days and reduced system expenditure by £817m. [93] Home-based care was associated with reduced costs of £7909 per person and increased quality life years by 0.035, compared to hospital-based care reduced which costs by £6480 per person and increased quality life years by 0.033. The May et al research study estimated home based care resulted in 17,098 fewer deaths or passing in hospital. [94]

Findings by St Catherines Hospice and SeCamb data, highlighted ambulance attendance, conveyance and admission being preventable for out-of-hours if out-of-hours care and medications are reliably in place. The cost of a health care assistant providing overnight support at home is £215, £36.68 to £41.97 hourly rate for band 7 Clinical Nurse Specialist, in comparison to £459 for the average cost of a patient taken to A&E by ambulance. [95]

Chong et al found costs for paediatric palliative home-based care were even greater, with an 87% saving compared to hospital-based care. Children and young people receiving home based PEoLC were less likely to be admitted to hospital, were more likely to have an Advanced Care Plan in place and quality of life for both the patient and reduction in the caregiver burden were shown to have improved within the first year. [96]

Economic analysis of PEoLC across multiple studies has demonstrated the cost efficiency of moving PEoLC out of hospitals at end-of-life and into the community, as part of a multi-disciplinary integrated approach, including specialist PEoLC.

10. Conclusion

10.1 What does good look like for Surrey in 2035?

Surrey's population is ageing and demand for end-of-life care is expected to increase. Community services, social care, primary care and hospice providers face workforce, financial and capacity pressures. Taken together, these factors create a growing risk that demand will outpace available capacity, potentially resulting in increased hospital utilisation, reduced choice and poorer experiences for patients and families unless investment and service redesign keep pace with need.

The evidence presented in this JSNA points towards a future end-of-life care system that identifies people earlier, enables more care to be delivered at home and in community settings, strengthens hospice and community provision, reduces avoidable hospital admissions, improves equity of access and experience across all communities, and is underpinned by sustainable commissioning and funding arrangements.

Achieving this ambition will require coordinated action across health, social care, hospices, voluntary sector organisations, communities and local residents. The recommendations that follow are intended to support progress towards this future state.

10.2 National policy direction

The Modern Service Framework has identified five working sub-goals for systems to drive change.

1. Support our staff and our population to better understand palliative care, death and dying.

2. Provide a person-centred approach and ensure equitable access to earlier and more effective identification of needs, in all settings of care.

3. Prevent distress through proactive and equitable assessment and management of need closer to home.

4. Ensure equitable access to personalised palliative care.

5. Deliver a palliative care response that is timely, effective and equitable, including access to out-of-hours telephone support, within this parliament

MSF Priorities for strategic commissioning:

Action 1: Produce an integrated needs assessment and understand service provision and utilisation.

Action 2: Move to sustainable contracting of hospice services.

10.3 Summary of Findings

The PEoLC Modern Service Framework (MSF) due to be published in 2026 will provide an evidence-based framework for commissioners to support improved outcomes for people with palliative and end-of-life care needs and their carers. End-of-life care is a priority for the government, with the aim that the MSF will address rising demand, late identification of need and inequalities in access, experience and outcomes.

Historically within Surrey, adult PEoLC services were commissioned at system, Place and neighbourhood level to meet the level of need and provide efficient, appropriate, timely care. For babies, children and young people, services are commissioned at system level, due to the smaller numbers. However, the high complexity requires delivery to be highly personalised within the community and home, to meet the needs of the child and family. As discussed in the thematic analysis, the overall system structure and commissioning, not individual services, is the primary driver of what provision is available.

The population data gathered, scoping of the current state of service provision, future projections of need and analysis against the national PEoLC specifications demonstrates a shift of resources and investment in resources is needed to support the current and growing number of deaths, growing complexity and higher proportion of deaths occurring within the community.

Socially, there is a need for greater awareness and health literacy of PEoLC services and support and support for having culturally inclusive discussions about death and dying, with inclusive language, which represents the diversity of religions in Surrey. Medical language and terminology used in information and resources can be a barrier to access, as is the accessibility of the communication. Local insights and research speak of digital barriers for people living in deprivation, displaced people and older people. [97] Insights also have raised a lack of trust in NHS and council websites and materials, due to a range of causal factors including accessibility of language, lack of representation of cultures and ethnic groups and previous poor experience with services. Literacy also represents a barrier for people who speak English as a second language and for women within GRT communities. Accessibility and availability of information, co-created with communities, will enable self-care, self-management and improved access to care. Management of social needs following death is also an identified need, with people at risk of losing their homes, transport and poverty at end-of life and following death or passing. For child death, the child Death nurses and SSCH family support workers, support families in navigating social needs. For adults, there is unmet need in understanding social impact at end-of-life and following death or passing.

Public health self-assessment of Compassionate Communities demonstrates that further development is required to create a compassionate Surrey, with the evidence from Sheffield Compassionate City approach demonstrating benefits in community support for death and dying utilising community assets and improved links and awareness of services. By embedding Compassionate Communities, Surrey could coproduce support to prevent poor quality of death and improve quality of life and health, in collaboration with residents, health, local authority, hospices and VCSFE.

Data shows Surrey hospital admissions are already at capacity at over 90%. The ‘Ten Year Plan’ sets out the need for left shift of care from hospital to community. For end-of-life care, this plan also mirrors preferred place of death for children, young people and adults, with higher preference and occurrence of death within the home, care-home or hospice compared to hospital. Resources will need to shift from hospital to home, care-home or hospice-based provision. The benefits integrated of PEoLC multi-disciplinary delivery within the community, delivered through an integrated MDT of GPs, community nurses and targeted and specialist PEoLC CNS and consultants, offering expertise and in-reach to support professionals and practitioners in meeting growing complexity of need, have been seen in the east Surrey PEoLC MDT pilot for adults and SPACE MDT in-reach for children and young people. Research calls for investment in specialist palliative care and care within the home to improve wellbeing near end-of-life and reduce system costs, which has been evidenced through a number of studies. [94]

The shift towards care delivered at home will only be achievable if Carers are recognised as a fundamental component of the end-of-life care system and supported accordingly. Local Authority commissioned VCSFE organisations such as Action for Carers, community health providers and Hospices provide holistic care for patients, carers and families, both before and after death, helping people to cope with the emotional, practical and psychological impact of serious illness and bereavement. Investment in these support models has the potential to improve outcomes for families while reducing future demand on health, mental health and bereavement services.

Perinatal in-reach was found to be effective, in managing PEoLC for babies on neonatal wards and supporting babies, families and staff transitioning into the community, particularly where the baby has complex needs. In-reach enabled in access to specialist PEoLC to support quality of death and symptom management on neonatal wards, where this is not currently part of the core staffing establishment or skill set on neonatal wards in Surrey. A specialist team, provides efficiency of delivery across Surrey, meeting the increasing complexity of needs across our neonatal units and providing quality, specialist care where it is needed the most, as the majority of child deaths occur within the first 27 days. For staff on the neonatal units, the SSCH specialist PEoLC perinatal team offers expertise which is not otherwise available, as well as the upskilling of staff. For infants who are transitioned home, the perinatal team offers smooth transfers of care into SSCH specialist PEoLC, targeted community nursing and support from a family support worker to navigate post-natal care and accessing health services. Funding for this team is provided charitably, as outlined by the MSF sustainable funding will be required to meet increasing need due to medical advances.

The Surrey Child Death Review team has been discussed as an exemplar by a wide range of stakeholders working with children across the system and outside of the system. Parents have spoken off their gratitude of the support the child death nurses provide, quietly coming alongside them and their family in their time of need, guiding and supporting them. The Child Death Overview Panel has been discussed as exemplar by professionals, in cascading learning and ensuring action is taken across the system. This can be seen by the wealth of thematic reviews undertaken, providing recommendations for prevention of child deaths and for quality of care. This service is due to change during 2027 to become aligned with the Sussex model.

Data and semi-structured interviews demonstrated that core and targeted nursing provided by health DN, CNN and hospice targeted community nursing teams, are working above capacity to meet the current level of need, with resulting moral injury and burnout for staff in not having capacity to meet the need. As seen in the case stories and interviews, staff are proud of their services and of the work that they do, working collaboratively within the community across sectors and services, to meet the needs of the people in their care. To provide the increasing levels of core, targeted and specialist support required in the community, as outlined in models discussed within research, sustainable funding will be required. The risks associated with charitably funded hospice community provision presents a risk to sustainability of resource, with services already having been restructured within hospices due to funding constraints and increasing demand.

Equitable, sustainable out-of-hours support is critical in supporting quality of death, safety of care and admission avoidance for hospitals and was discussed as an area of unmet need. At present core community nursing out-of-hours provision for children and adults is being supplemented by charitable hospice provision, to meet the required capacity of senior, trained PEoLC nurses. Nurses spoke of the isolation in working at night and the increased risk in ensuring practice is safe, requiring competent, trained nursing staff and two to attend to both manage safe delivery of clinical care and to support the family and person at end-of-life. All spoke of the pressure on teams of maintaining service provision in the day following nighttime attendance and the emotional toll of attending core nursing duties following supporting someone at end of life. Research highlights that designated 24/7 telephone support lines are needed for people who are palliative and their families, to prevent hospital admissions. The PATCH children’s service in Surrey is a model of this type of provision, ensuring appropriate and timely support. [94] Alongside nursing provision, greater access to out-of-hours medication is required, as discussed by medicines management teams. As seen in SeCamb data access to medicines represents a high proportion of ambulance attendance.

The assessments demonstrate that hospices are key strategic partners in delivering community-based palliative and end-of-life care. Achieving the proposed shift of care from hospital to community settings will require sustainable commissioning arrangements that recognise hospices as strategic partners within the system. Hospices will have a key part to play in providing PEoLC specialists for in-reach into health services and care-homes and providing care for the growing number of people who are unable to be safely cared for within the home and/or require complex care at end-of-life. As seen within the data, children’s and adults’ hospices have the bed capacity to accept a higher number of patients. However sustainable funding is required to enable the staffing capacity to support higher bed occupancy and the complexity of admitted patients. At present statutory funding contributes between 20 to 30% of hospice care costs, with the remaining costs being met charitably. The instability of funding and the fact that many hospices running in deficit, this impacts the ability of hospices to maintain the resources required to keep all of their beds open. St Catherine’s has piloted models to improve occupancy funded by the ICB and SASH NHS Trust, including dedicated step-down beds and fast track beds, with agreement from SeCamb to transfer to the hospice directly. These models support system flow, ensuring care is given in the right place at the right time, which has been enabled through sustainable secure funding.

Targeted in-reach into care-homes is an area for further investment and growth, with a higher proportion of deaths in care-homes and in the home and an increasing aging population. Specialist and targeted in-reach will need to be equitably and sustainably provided, to prevent hospital admissions and to support people in dying in their preferred place of death. As seen with the perinatal in-reach, in-reach into care-homes will support with the upskilling of staff and access to specialist PEoLC which is not within exiting care-home core staffing.

Young adulthood and transition is a growing need, with the medical advances and more premature life-limited infants surviving into adulthood. Design of care services and care environments will need to be tailored to meet the needs of this population. Young people with muscular dystrophy or friederichs ataxia live into young adulthood, with complex medical needs. At present adult hospices can offer the complexity of care required but are designed for older adults. This cohort needs to be considered in how their complex needs can be met and managed within the community and hospices.

Barriers discussed by staff to improving capacity and provision included variation and limitations in accessing non-medical prescriber or advanced nurse practitioner training to provide timely medication adjustments in the community. Staff also discussed the need for a single-system MAR charts, to enable simplicity of prescribing and accuracy of medicines management.

The research presented and system data shows that system cost efficiencies can be made by investing in community-based care, with access to targeted and specialist PEoLC. Prompt, targeted palliative and end-of-life care from skilled professionals out-of-hours is required, to prevent crisis admission, as well as improved matching of care to the preferences of families and those in advanced terminal illness. With an aging population and advances in medical care, community teams will need to support greater complexity within the home and improved access to hospice care. [94]

Health inequalities in end-of-life care and in death, dying and passing, can be seen from the data presented and experiences of people with lived and living experience. People experiencing multiple disadvantage, inclusion health groups, ethnic minority communities, those living in deprivation and people with learning disabilities are all more likely to die prematurely, die suddenly and unexpectedly, or from suicide, including birthing people, babies and children. Causal factors highlighted the need for improvement in accessibility of care and services, addressing unconscious bias, anti-racist practice supported by organisational culture, cultural awareness, implementation of reasonable adjustments, religious inclusion, health literate communication and health literacy in accessing care, transport, location and environment.

Co-production, co-design and personalisation of care is required with community connectors and advocacy to support care navigation and access, meeting people where they are, in their communities and adopting social models of provision. Many of our underserved communities present at hospitals in crisis, either less likely to ask for help and/or not knowing where to ask for help. People are not identified as being at end-of-life, as they fit outside our medical ‘norms’, with end-of-life for some inclusion health groups starting much earlier in their life term. There is mistrust of health and social care and cultural stigma and taboos in accessing support from hospices, or services which are not within cultural norms. VCSFE organisations have built these trusted relationships, by recruiting community connectors and family support workers from within the communities, people can be enabled to utilise their community and family resources using a strengths based approach.

As in the ‘Ten Year Plan’, supporting ‘analogue to digital’, 10 Year Health Plan for England: fit for the future - GOV.UK [70] in having equitable access to care records via the Surrey Care Record and inclusive quality data capturing inclusion health groups, protected characteristics, will enable personalisation and quality of care. Access to electronic patient records across the system will also assist prevention of medication errors and access to DNA’s, ReSPECT and ACP’s.

Healthcare within prisons is commissioned by NHS England. However, with an increasing older prison population, more prisoners will need to access end-of-life within the local health system. To ensure quality of death and appropriate medical care, robust safe pathways will need to be formed to enable care in the most appropriate setting to meet the need.

Provision in early years settings in supporting children within settings following the death of a child and support for the family, is equitable and consistent in practice, with guides and training available for practitioners. Support in educational settings is much more varied, depending on whether the school is part of an academy, private school or maintained and if they access and utilise the resources provided by Surrey Healthy Schools. Pathways for support are in place, with clear guidance and in-reach from child death nurses and the hospice available. Further work is required to understand if schools are aware of the breadth of provision and resources available.

During the JSNA process, it was not possible to hear from all groups, services and professionals with the focus that this area required. Recommendations for further data insight and co-production are:

• Care-homes, experiences of people in care-homes and staff working in care-homes.

• People experiencing homeless: co-production to further understand barriers to services and what service provision should be. Further work is being undertaken with the Surrey and Sussex Cancer Alliance which should provide some insights into need.

• Sex workers were not captured within the report and would require further investigation.

• Gypsy, Roma and Traveller communities were captured within the report from regional and national literature sources. However local views could not be fully obtained.

• LGBTQ+ communities would require further local insight and data for end-of-life care.

Currently data for end-of-life is held with the ICB, Local Authority, hospices, Place and NHS providers. The system data does not fully capture protected characteristics and inclusion health groups which was a limiting factor in being able to fully appraise the current state of health inequalities in Surrey related to end-of-life care.

There is a need for a whole system health economics analysis of PEoLC. At present ICB data and costings have been evaluated on hospital based secondary-care. Expansion of system data oversight including community, primary care and hospice data and evaluation is required to understand the full cost of PEoLC to the system, where improvements can be made and to evidence benefit.

10.4 Recommendations:

10.4.1 What are the biggest changes Surrey needs to make over the next 10-15 years?

Taken together, the findings within this JSNA suggest that Surrey does not require a series of isolated service improvements, but a set of system-wide shifts that will enable the delivery of high-quality, equitable and sustainable end-of-life care over the next 10-15 years. The recommendations below are intended to provide a strategic framework for commissioners, providers, hospices, public health teams, local authorities, communities and citizens to work towards the shared vision described in this assessment.

1. Plan now for future demand

Recommendation: Develop a Surrey-wide 10–15-year demand and capacity plan for palliative and end-of-life care.

This should model future need, workforce requirements, community capacity, care-home capacity, hospice capacity, financial sustainability and projected place of care and death.

Why?

Demand is increasing. The system needs to understand what will be required in the future, not simply respond to current pressures.

2. Hospital to community, shift care, investment and resource closer to home

Recommendation: Invest in community-based models of end-of-life care that enable more people to receive care in the place they choose.

For children and young people, connection between larger scale commissioning and funding and neighbourhood development, embedding delivery within the evolution of neighbourhoods.

This includes:

• Hospice at Home

• Community Nursing

• Access to Specialist Community Nursing to support core nursing services

• Specialist Palliative Care Advice and Support

• Care-home Support

• Neighbourhood Integration

• Rapid Response

• Out-of-hours Provision

• Effective medicines management and prescribing

• Psychological support for life-limited people and their carers/ families to support engagement with care and effective management of conditions

Why?

People consistently express a preference to receive care at home or in familiar community settings. A community-based model is also critical if the system is to meet future demand sustainably. To support this, consistency in prescribing, access to medications and non-medical prescribers are needed in the community.

3. Reduce inequities in end-of-life care and bereavement

Recommendation: Take coordinated action to reduce inequities in access, experience and outcomes across palliative and end-of-life care and bereavement support.

Particular attention should be given to communities and populations experiencing poorer access, outcomes or representation within current services and datasets.

This includes:

• Improvements in demographics data collection across providers

• Development of all age population health data utilising hospice, Public Health, VCSE and NHS provider data.

• Co-production and co-design with communities

• Community connectors

• Outreach where our communities are

• Training to improve cultural awareness and trauma informed approaches

• Build health literacy in end-of-life care across our workforce and population

Why?

The evidence demonstrates variation in access and experience, alongside significant gaps in understanding the needs of some populations. Improved data will enable prevention and improved quality of death, through targeted and coordinated action to address inequalities. Connection and outreach will support access and build awareness, understanding and trust in services.

4. Create a sustainable and integrated end-of-life care system

Recommendation: Recognise hospices, communities and voluntary sector organisations as strategic partners and co-investors in the delivery of palliative and end-of-life care and develop sustainable commissioning arrangements to support future demand.

This should include:

• Sustainable cross- sector national, regional and system resource utilisation and funding

• Integrated pathways

• Shared outcomes

• System workforce planning, training and development

• System workforce clinical and peer support networks

• Digital information sharing

• System-wide collaboration

Why?

Seamless care without borders for people at end of life and their families through well designed systems and pathways will enable timely and equitable access. Hospices and community partners are a critical part of Surrey's health and care infrastructure. The future system depends on sustainable capacity across hospices, community providers, primary care, social care and voluntary organisations. Our workforce is key to the sustainability of care, co-ordinated training, shared expertise and peer support will enable multi-disciplinary working, quality of care and emotional resilience.

5. Embed a public health approach to death, dying and loss

Recommendation: Work together to create a compassionate and death-literate Surrey where conversations about death, dying, loss and caregiving are normalised, community capacity is strengthened, and citizens are supported to care, grieve and support one another.

This should involve:

• Public Health

• Local Authorities

• Citizens

• Schools and Colleges

• Family Centres

• Employers

• Faith Communities

• Civic Leaders

• Voluntary Organisations

• Community Groups

• Hospices

• NHS

Why?

Death, dying, grief and caregiving affect everyone. Building community understanding, confidence and resilience is essential if Surrey is to meet growing need and improve experiences for individuals, families and communities.

6. Unpaid carers are the foundation of end-of-life care and partners in care delivery

Recommendation: Unpaid carers should be recognised not only as partners in care delivery, but also importantly as individuals with their own health and wellbeing needs. If they fail then the system fails.

This should involve:

• A carer-centred assessment should be routinely offered to every unpaid carer.

• Proactive timely conversations about end-of-life care

• Personalised support

• Partnership approach

• Post bereavement support

Why?

The role of the carer is essential in helping to achieve NHS and Government priorities and moving end-of-life care away from acute settings and into the community or at home. Understanding and meeting the needs of unpaid carers who provide this support is essential in order to ensure that the system works.

7. Address variation in commissioning and provision at end-of-life

Recommendation: Address un-warranted variation in funding, commissioning and service delivery for all age end-of-life care.

This should involve:

• Perinatal care

• Out-of-hours provision

• All age community nursing care

• All age access to specialist community nursing care and advice

• General Practice

• Acute hospital provision

• Hospices

• Support for care-homes

• Access to social prescribing

• Access to medicines out-of-hours

• Outcomes based commissioning

Why?

Reducing fragmentation and inequity of services will support prevention of hospital admissions and enable care in the right place at the right time through consistency and clarity of service provision, which will support care navigation and access. Outcomes based commissioning will inform where improvements are needed. Utilise best practice examples as seen in the PATCH out-of-hours triage service, SSCH perinatal in-reach into ASPH, Hospice, NHS and care-home joint working in northwest Surrey and Guildford and Waverley and acute hospital and hospice joint working in east Surrey.

8. Transition

Recommendation: The needs of a rising population of young adults needing end-of-life care will need to be effectively managed with age-appropriate care co-ordinated across the system and region.

This should involve:

• Access to specialist PEoLC and GPwSI case management of young adults with complex life-limiting conditions.

• Age-appropriate hospice environments.

• Access to specialist community nurse provision supporting complexity.

• Effective management of transition from paediatric to adult medical equipment in the home.

Why?

Enabling effective care co-ordination and care management transition from neurodevelopmental paediatricians and specialist paediatric services to trained, age appropriate environments will support personalised care, quality of life and quality of death.

10.4.2 Where are the key opportunities to improve outcomes and reduce inequalities?

At present the Surrey system does not have an overarching PEoLC population health quantitative and qualitative data set pulling together a cross section of data from across the system. As discussed in the JSNA, there is also further work required to improve data quality and recording of protected characteristics and inclusion health groups, which would enable accuracy of the data recorded and ability to utilise the data to target support and services to those most in need.

As such we are unable to accurately determine from the data who experiences the greatest need, who has the greatest unmet need, who experience the poorest outcomes and where the priorities in addressing health inequalities in end-of-life care in Surrey.

Surrey-I gives neighbourhood profiles that are useful in understanding the needs of the local population and health inequalities. [98] However, they are not specific to the needs of people at end-of-life.

From the insights gathered during the JSNA in speaking to people with lived and living experience, there initial suggestions that some inclusion health groups and protected characteristics are disproportionately impacted by health inequalities at end-of-life. However, this would require further research and insight to draw conclusions for commissioning and practice.

People experiencing multiple-disadvantage are a key group, where data spoke of a high level of need at end-of-life and missed opportunities to enable quality of death. Particularly those experiencing homelessness, who have a greater likelihood of early death resulting in life years lost and a missed opportunities for prevention in their becoming homeless and healthcare inequalities when homeless.

LeDER and Child Death Review reports have both made recommendations with respect to people with learning disabilities, people with neurodisability and autistic people, to address inequity in life years lost, discussing death and dying as part of advanced care planning and quality of death.

Veterans are a key group, due to leave to remain impacting access to services and cultural practice in not proactively engaging with health services. Inequities are compounded due to higher likelihood of experiencing multiple disadvantage, particularly experience of the criminal justice system and mental health needs and large population of Surrey’s veterans being from ethnic minority communities.

People from ethnic minority communities are a priority group, data suggests compounded inequity with a higher proportion of communities living in deprivation. Health literacy, access and experience of care are barriers to accessing end-of-life care and enabling quality of life and quality of death.

Surrey has a number of prisons, including the largest women’s prison in Europe and an increasingly elderly prison population in men’s prisons. The Local Authority and ICB need to continue to work with NHSE to enable prisoners to safely access care at end-of-life, to support people to die with dignity.

Co-production and co-design with communities, outcomes-based commissioning and population health data will help to build a picture of need. Alongside ensuring commissioned services and service delivery are co-created with communities and are continually measured for quality and equity of care.

10.4.3 Where should organisations be thinking differently about services and provision

1. Inclusion and accessibility

Recommendation: Build understanding of unmet need, focusing on quality of data inputting to understand who is accessing care, while also building insight into who is not accessing care and where health inequalities exist. Utilising this insight, services can work with communities and trusted community partners to co-design services and care to meet needs.

This should involve:

• NHS, Local Authority and hospices co-producing and co-designing with communities and VCSFE partners.

• Co-creation of inclusive resources and information for end-of-life and death or passing, in accessible formats.

• Service community outreach in places and spaces where our communities are.

• Strengths based approach.

• Linking in with Community Connectors and Family support workers across the system.

• Capture protected characteristics, inclusion health groups in data entry for service-users.

• Become a health literate service in all forms of communication.

• Build a culturally competent service.

Why?

To improve awareness, understanding and health literacy services and support conversations and language around death and dying.

2. Medicines management

Recommendation: Agreed prescribing practices, communication and medicines to enable effective access and reduce likelihood of prescribing errors.

This should include:

• Single MAR chart template and prescribing guidelines across the system for simplicity of communication, timeliness of adjustments to medication and to reduce medication errors.

• Accessible and equitable prescribing training to enable timely prescribing.

• Training network across providers to support creation of non-medical prescribers.

Why?

Cohesive approach to medicines management will improve capacity efficiency for clinicians and effective symptom management for people with life-limiting conditions.

3. Workforce development

Recommendation: Facilitate development of knowledge and skills, including Clinical Nurse Specialist in PEoLC and Advanced Clinical Practice through cross-organisation/ cross-sector partnerships.

This should include:

• Paid training, upskilling GPs and secondary-care clinicians about end-of-life care, how to recognise, how to have difficult conversations, prescribing.

• Supervision and psychological support for staff working with life-limited people and families at end-of-life to address moral injury and trauma.

• Personalisation of Care and quality of death enabled through improved training and competence in ACP, ReSPECT and Victoria and Stuart’s toolkit.

• Creating more proactive care and earlier discussions about end-of-life care/advanced care planning.

• Training and support for care-home staff in ACP, ReSPECT and PEoLC.

Why?

End-of-Life Care is everyone’s business. Through providing education and training to improve skills and knowledge in discussions about death and dying, this will support proactive planning and quality of death.

4. Workplaces and education

Recommendation: Support, resources and training for work places, education and early years in support people impacted by death and dying and life-limiting conditions.

This should include:

• Greater awareness and uptake of Surrey healthy Schools.

• Funded in-reach from Child Death Nurses to support expected death as well as un-expected death.

• Training and education for schools and workplaces in supporting people with life-limiting conditions.

Why?

To enable compassionate communities and collective societal confidence in discussing death and dying. We need to reach people where they are and being the social determinants of health into healthcare design, to enable improved outcomes. Support in the workplace and education will reduce isolation reported by people and deduce the mental health impact as a result of isolation.

10.4.4 Where should commissioners and the system be thinking differently about investment and utilisation of resources?

With significant current and on-going restructure in health and local authority organisations and cost pressure across the system in health, local authority, social care, hospices, education, VCSFE and prisons. The system needs to effectively utilise funding and resources to manage current and on-going need.

• Opportunities for collaborative funding, resource utilisation and delivery of community-based approaches to death, dying and end-of-life, between Public Health, health, education, VCSFE and hospices. Such as the implementation of Compassionate Communities.

• Targeted non recurrent funding from statutory bodies, with co-investment from VCSFE, to pilot proof of concept innovation in services, particularly those addressing health inequalities in end-of-life care. Priorities groups for Surrey including people experiencing homelessness, people experiencing multiple disadvantage, ethnic minority communities and veterans.

• Reviewing existing best practice examples in relation to use of longer-term commissioning models for existing funding, such as Continuing Healthcare (CHC), to identify opportunities for further innovation. Such as sustainable CHC funding for St Catherine’s Hospice fast track bed for end-of-life care on their inpatient unit. Utilising system fixed assets in a cost-efficient way to prevent admission, reduce length of stay, support system flow and enable preferred place of death.

• Use of shorter term non-recurrent funding to be reviewed, such as that from NHS England or government. Consideration of PEoLC being mainstreamed into the use of funding for designing and commissioning of services. Through integration of PEoLC as a consideration in any commissioning intention or activity, including utilisation of Service Development Funding (SDF). PEoLC could be considered as part of a continuum for chronic conditions, or specialist services, as part of commissioning service design and pathways. Consideration when designing a new service of what needs to occur earlier in the pathway, from universal prevention, to service intervention, through to end-of-life care. What are the opportunities to factor in and invest in PEoLC as part of other funding and investment.

• Where PEoLC is linked to other programmes such as frailty, oncology, or complex CYP. PEoLC to be part of streams of funding for related programmes, so that funding, provision and pathways are complementary rather than stand alone.

• Identifying sustainable funding models for hospices that prioritise/maximise existing available funding and the potential for future funding streams changes, such as the left shift and expansion of neighbourhoods.

• Development of specialist funding for specialist children and young people’s PEoLC services across a larger ICB or regional footprint.

• Hospices as strategic partners and co-investors in the system to delivery system strategic priorities, with the subject matter expertise and links with communities, to innovate and develop end-of-life care which meets the needs of our populations now and in the future.

Bibliography

[1] NHS England (n.d.f) NHS England » Palliative and end-of-life care. Available at: https://www.england.nhs.uk/eolc  (Accessed: 24 September 2026).

[2] The Lancet Healthy Longevity (n.d.) Volume 2, Issue 9. Available at: https://www.thelancet.com/journals/lanhl/issue/vol2no9/PIIS2666-7568(21)X0009-8  (Accessed: 24 September 2026).

[3] NHS England (n.d.j) NHS England » Strategic commissioning framework. Available at: https://www.england.nhs.uk/long-read/strategic-commissioning-framework  (Accessed: 24 September 2026).

[4] Surrey Safeguarding Children Partnership (2024b) PowerPoint Presentation. Available at: https://www.surreyscp.org.uk/wp-content/uploads/2024/06/5-Steps-to-Embedding-Professional-Curiosity-1.pdf  (Accessed: 24 September 2026).

[5] Office for Health Improvement and Disparities (2023) Excess mortality in England and English regions: March 2020 to December 2023 - GOV.UK. Available at: https://www.gov.uk/government/statistics/excess-mortality-in-england-and-english-regions  (Accessed: 24 September 2026).

[6] Middleton Primary Care Network (n.d.) expected-versus-unexpected-death. Available at: https://www.middletonpcn.nhs.uk/is-death-expected  (Accessed: 24 September 2026).

[7] Marie Curie (2024b) public-attitudes-to-death-and-dying-bereavement-uk-report-2024. Available at: https://www.mariecurie.org.uk/document/public-attitudes-to-death-and-dying-bereavement-uk-report-2024  (Accessed: 24 September 2026).

[8] Sallnow, L. et al. (2022) Report of the Lancet Commission on the Value of Death: bringing death back into life - The Lancet. Available at: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)02314-X/fulltext  (Accessed: 24 September 2026).

[9] NHS (n.d.) What end-of-life care involves - NHS. Available at: https://www.nhs.uk/tests-and-treatments/end-of-life care/what-it-involves-and-when-it-starts (Accessed: 24 September 2026).

[10] The Health Foundation (n.d.b) UK mortality trends and international comparisons | The Health Foundation. Available at: https://www.health.org.uk/reports-and-analysis/briefings/uk-mortality-trends-and-international-comparisons  (Accessed: 24 September 2026).

[11] UK Government (n.d.j) Population Estimates | Surrey-i. Available at: https://www.surreyi.gov.uk/dataset/population-estimates-em0ym  (Accessed: 24 September 2026).

[12] UK Government (n.d.d) Deaths or passing by area of usual resident: LSOA, ward and CCG | Surrey-i. Available at: https://www.surreyi.gov.uk/dataset/deaths-by-area-of-usual-resident-lsoa-ward-and-ccg-2y3ly  (Accessed: 24 September 2026).

[13] UK Government (n.d.n) Theme 3: Health and Wellbeing | Surrey-i. Available at: https://www.surreyi.gov.uk/understanding-inequality-in-surrey-an-evidence-base/theme-3-health-and-wellbeing  (Accessed: 24 September 2026).

[14] The Health Foundation (2040) Health in 2040: projected patterns of illness in England | Health Foundation. Available at: https://reader.health.org.uk/projected-patterns-of-illness-in-england/projections-of-ill-health-overall-levels-of-ill-health-in-england-over-the-next-20-years  (Accessed: 24 September 2026).

[15] Sleeman, K.E. et al. (2018) What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Available at: https://journals.sagepub.com/doi/pdf/10.1177/0269216317734435?__cf_chl_f_tk=Nbmz2ZdXD9efj4FXju3V8xyrEXw8Kw7tUsqbImhsr0A-1782837521-1.0.1.1-jFZ7BOzjx.RrXaAccCe8Y__9Jl8V3jtTlA8rAExorRc  (Accessed: 24 September 2026).

[16] NHS England (2025) Beds-Open-Overnight-Web_File-Q4-2025-26.xlsx. Available at: https://view.officeapps.live.com/op/view.aspx?src=https%3A%2F%2Fwww.england.nhs.uk%2Fstatistics%2Fwp-content%2Fuploads%2Fsites%2F2%2F2026%2F05%2FBeds-Open-Overnight-Web_File-Q4-2025-26.xlsx&wdOrigin=BROWSELINK  (Accessed: 24 September 2026).

[17] UK Parliament (n.d.) Capacity pressures in health and social care in England. Available at: https://commonslibrary.parliament.uk/capacity-pressures-in-health-and-social-care-in-england  (Accessed: 24 September 2026).

[18]King’s College London (n.d.b) Trends in the Prevalence and Complexity of Children and Young People with a Life-limiting or Life-threatening condition in England | King's College London. Available at: https://www.kcl.ac.uk/research/trends-prevalence-complexity-children-young-people-lifelimiting-lifethreatening-condition  (Accessed: 24 September 2026).

[19] Office for Health Improvement and Disparities (n.d.b) HNA Prisons | Surrey-i. Available at: https://www.surreyi.gov.uk/dataset/hna-prisons-2zg5q  (Accessed: 24 September 2026).

[20] NHS England (n.d.i) NHS England » Service specifications for palliative and end-of-life care: Children and young people (CYP). Available at: https://www.england.nhs.uk/publication/service-specifications-for-palliative-and-end-of-life-care-children-and-young-people-cyp  (Accessed: 24 September 2026).

[21] Childhood Bereavement Network (2022) Childhood bereavement key statistics 2022.pdf. Available at: https://childhoodbereavementnetwork.org.uk/sites/default/files/uploads/files/Childhood%20bereavement%20key%20statistics%202022.pdf  (Accessed: 24 September 2026).

[22] UK Government (n.d.i) Life expectancy | Surrey-i. Available at: https://www.surreyi.gov.uk/dataset/life-expectancy-2okrn  (Accessed: 24 September 2026).

[23] MBRRACE-UK (2024) Maternal mortality 2022-2024 | MBRRACE-UK | NPEU. Available at: https://www.npeu.ox.ac.uk/mbrrace-uk/data-brief/maternal-mortality-2022-2024  (Accessed: 24 September 2026).

[24] MBRRACE-UK (n.d.) State of the nation report | MBRRACE-UK. Available at: https://timms.le.ac.uk/mbrrace-uk-perinatal-mortality/surveillance  (Accessed: 24 September 2026).

[25] South West London and Surrey Heartlands Maternal Medicine Network (n.d.) Identifying women at risk – South West London Surrey Heartlands Maternal Medicine. Available at: https://southwestlondon-surreyheartlands-maternalmedicine.nhs.uk/identifying-women-at-risk  (Accessed: 24 September 2026).

[26] National Child Mortality Database (2025) Child death data release 2025 | National Child Mortality Database. Available at: https://www.ncmd.info/publications/child-death-review-data-release-2025  (Accessed: 24 September 2026).

[27] Child Poverty Action Group (2024) poverty. Available at: https://cpag.org.uk/sites/default/files/2024-11/Child%20mortality%20and%20deprivation%20in%20England.pdf  (Accessed: 24 September 2026).

[28]Surrey Safeguarding Children Partnership (2024c) Sudden-Unexpected-Death-in-Infancy-a-ten-year-thematic-review-of-deaths or passing-of-babies-normally-resident-in-Surrey-2014-2024.pdf. Available at: https://www.surreyscp.org.uk/wp-content/uploads/2025/04/Sudden-Unexpected-Death-in-Infancy-a-ten-year-thematic-review-of-deaths-of-babies-normally-resident-in-Surrey-2014-2024.pdf  (Accessed: 24 September 2026).

[29] Surrey Safeguarding Children Partnership (2024a) 9-year-Probable-Suicide-Thematic-Review-Surrey-1.pdf. Available at: https://www.surreyscp.org.uk/wp-content/uploads/2024/02/9-year-Probable-Suicide-Thematic-Review-Surrey-1.pdf  (Accessed: 24 September 2026).

[30] Surrey Safeguarding Children Partnership (2025) 5-year-thematic-review-of-deaths or passing-by-suspected-suicide-2020-2025.pdf. Available at: https://www.surreyscp.org.uk/wp-content/uploads/2025/12/5-year-thematic-review-of-deaths-by-suspected-suicide-2020-2025.pdf  (Accessed: 24 September 2026).

[31] Shooting Star Children’s Hospices (2025b) SSCH-APPM-2025.pdf. Available at: https://www.shootingstar.org.uk/app/uploads/2026/03/SSCH-APPM-2025.pdf  (Accessed: 24 September 2026).

[32] Shooting Star Children’s Hospices (n.d.i) Transition support - Shooting Star Children’s Hospices. Available at: https://www.shootingstar.org.uk/how-we-help/family-zone/a-z-of-services/transition  (Accessed: 24 September 2026).

[33] Rowley, J. et al. (2022) Full article: Poverty, choice and dying in the UK: a call to examine whether public health approaches to palliative care address the needs of low-income communities. Available at: https://www.tandfonline.com/doi/full/10.1080/13576275.2022.2044299  (Accessed: 24 September 2026).

[34] Marie Curie (2024a) crsp-poverty-at-the-end-of-life-2024. Available at: https://www.mariecurie.org.uk/document/crsp-poverty-at-the-end-of-life-2024  (Accessed: 24 September 2026).

[35] Surrey Safeguarding Children Partnership (n.d.b) Child Deaths or passing - Surrey Safeguarding Children Partnership. Available at: https://www.surreyscp.org.uk/professionals/child-deaths  (Accessed: 24 September 2026).

[36] Klonoff-Cohen, H. et al. (1999) Environmental Factors and Risk for Sids | Pediatric Research. Available at: https://www.nature.com/articles/pr19991059z  (Accessed: 24 September 2026).

[37] Barnardo’s (n.d.) No crib for a bed: the impact of the cost-of-living crisis on bed poverty | Barnardo's. Available at: https://www.barnardos.org.uk/research/no-crib-impact-cost-living-crisis-bed-poverty  (Accessed: 24 September 2026).

[38] HM Government (n.d.) The best start for life: a vision for the 1,001 critical days - GOV.UK. Available at: https://www.gov.uk/government/publications/the-best-start-for-life-a-vision-for-the-1001-critical-days  (Accessed: 24 September 2026).

[39] Walsh, D. et al. (n.d.) new era of inequality: profound changes to mortality in England, Scotland, and 10 major British cities | European Journal of Public Health | Oxford Academic. Available at: https://academic.oup.com/eurpub/article/35/2/235/8008562  (Accessed: 24 September 2026).

[40] Gomes, B. and Higginson, I.J. (2006) 0269216305pm980o. Available at: https://doi.org/10.1191/0https://kclpure.kcl.ac.uk/portal/en/publications/factors-influencing-death-at-home-in-terminally-ill-patients-with/269216305pm980o   (Accessed: 24 September 2026).

[41] UK Government (2021c) Census 2021: Ethnic Group | Surrey-i. Available at: https://www.surreyi.gov.uk/census-2021/ethnic-group  (Accessed: 24 September 2026).

[42] Surrey Minority Ethnic Forum (n.d.c) Surrey Minority Ethnic Forum Surrey Minority Ethnic Forum. Available at: https://www.smef.org.uk/ (Accessed: 24 September 2026).

[43] World Health Organization (n.d.) Preterm birth. Available at: https://www.who.int/news-room/fact-sheets/detail/preterm-birth (Accessed: 24 September 2026).

[44] MBRRACE-UK (2025) MBRRACE-UK Maternal Report 2025 - Main ONLINE v1.0.pdf. Available at: https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/maternal-report-2025/MBRRACE-UK%20Maternal%20Report%202025%20-%20Main%20ONLINE%20v1.0.pdf (Accessed: 24 September 2026).

[45] National Institute for Health and Care Research (n.d.) Travelling communities need personalised end-of-life care - NIHR Evidence. Available at: https://evidence.nihr.ac.uk/alert/personalised-end-of-life care-essential-travelling-communities (Accessed: 24 September 2026).

[46] National Suicide Prevention Alliance (2023) Support-Guide-for-services-working-with-Gypsy-Roma-and-Traveller-communities.pdf. Available at: https://nspa.org.uk/wp-content/uploads/2023/06/Support-Guide-for-services-working-with-Gypsy-Roma-and-Traveller-communities.pdf  (Accessed: 24 September 2026).

[47] Surrey Minority Ethnic Forum (n.d.b) SMEF Research — Surrey Minority Ethnic Forum. Available at: https://www.smef.org.uk/research (Accessed: 24 September 2026).

[48] UK Government (2026b) People with learning disabilities 2026 update | Surrey-i. Available at: https://www.surreyi.gov.uk/jsna/people-with-learning-disabilities-full (Accessed: 24 September 2026).

[49] Surrey Safeguarding Children Partnership (2021) Child-Death-Review-Partnership-Neurodisability-Thematic-Review.pdf. Available at: https://www.surreyscp.org.uk/wp-content/uploads/2021/06/Child-Death-Review-Partnership-Neurodisability-Thematic-Review.pdf (Accessed: 24 September 2026).

[50] UK Government (n.d.g) JSNA Multiple Disadvantage | Surrey-i. Available at: https://www.surreyi.gov.uk/jsna/jsna-multiple-disadvantage  (Accessed: 24 September 2026).

[51] NHS England Digital (n.d.) Reasonable Adjustment Flag - NHS England Digital. Available at: https://digital.nhs.uk/services/patient-flags-service/reasonable-adjustment-flag  (Accessed: 24 September 2026).

[52] The Victoria and Stuart Project (n.d.) End-of-life Care Planning | The Victoria And Stuart Project. Available at: https://www.victoriaandstuart.com/  (Accessed: 24 September 2026).

[53] UK Government (n.d.k) PowerPoint Presentation. Available at: https://www.surreyi.gov.uk/download/vq1d4/vgb/Disability%20Infographic.pdf  (Accessed: 24 September 2026).

[54]Disability Unit (n.d.) The lived experience of disabled people in the UK: a review of evidence - GOV.UK. Available at: https://www.gov.uk/government/publications/the-lived-experience-of-disabled-people-in-the-uk-a-review-of-evidence/the-lived-experience-of-disabled-people-in-the-uk-a-review-of-evidence  (Accessed: 24 September 2026).

[55] UK Government (n.d.e) Executive summary and recommendations - GOV.UK. Available at: https://www.gov.uk/government/publications/the-health-of-people-in-prison-on-probation-and-in-the-secure-nhs-estate-in-england/executive-summary-and-recommendations  (Accessed: 24 September 2026).

[56] UK Government (2021a) 2021 Census: Sexual Orientation | Surrey-i. Available at: https://www.surreyi.gov.uk/census-2021/2021-census-sexual-orientation  (Accessed: 24 September 2026).

[57] UK Government (2021b) All-cause and cause-specific mortality by sexual orientation, England and Wales - Office for National Statistics. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthinequalities/bulletins/allcauseandcausespecificmortalitybysexualorientationenglandandwales/march2021tonovember2024  (Accessed: 24 September 2026).

[58] Marie Curie (n.d.c) Palliative and end-of-life care for LGBTQ+ people | Marie Curie. Available at: https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/lgbtq  (Accessed: 24 September 2026).

[59] UK Government (2021d) Census 2021: Religion | Surrey-i. Available at: https://www.surreyi.gov.uk/census-2021/census-2021-religion  (Accessed: 24 September 2026).

[60] Office for Health Improvement and Disparities (n.d.a) Faith at end-of-life: A resource for professionals, providers and commissioners working in communities. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/496231/Faith_at_end_of_life_-_a_resource.pdf  (Accessed: 24 September 2026).

[61] Surrey Minority Ethnic Forum (n.d.a) Reports and Accounts — Surrey Minority Ethnic Forum. Available at: https://www.smef.org.uk/reports-and-accounts  (Accessed: 24 September 2026).

[62] Home Office (n.d.a) Armed Forces Community | Surrey-i. Available at: https://www.surreyi.gov.uk/jsna/armed-forces-community  (Accessed: 24 September 2026).

[63] Home Office (n.d.b) Indefinite leave to remain (armed forces): Eligibility and fees - GOV.UK. Available at: https://www.gov.uk/apply-indefinite-leave-to-remain-armed-forces  (Accessed: 24 September 2026).

[64] UK Government (n.d.f) Housing in Surrey | Surrey-i. Available at: https://www.surreyi.gov.uk/dataset/housing-in-surrey-2zlmp  (Accessed: 24 September 2026).

[65] Hansford, L. et al. (2022) How does housing affect end-of-life care and bereavement in low-income communities? A qualitative study of the experiences of bereaved individuals and service providers in the United Kingdom - PMC. Available at: https://pmc.ncbi.nlm.nih.gov/articles/PMC9272155  (Accessed: 24 September 2026).

[66]Citizens Advice (n.d.) Staying in your council home when someone dies - Citizens Advice. Available at: https://www.citizensadvice.org.uk/housing/staying-in-your-council-home-when-someone-dies/stay-in-your-council-home-when-someone-dies  (Accessed: 24 September 2026).

[67] Healthwatch Surrey (n.d.) The-Commission-on-Palliative-and-End-of-life care-–-March-25.pdf. Available at: The-Commission-on-Palliative-and-End-of-Life-Care-–-March-25.pdf  (Accessed: 24 September 2026).

[68] UK Government (2025c) Palliative & End-of-life care Strategy 2020-2025. Available at: https://mycouncil.surreycc.gov.uk/documents/s77285/Item%207%20-%20PEoLC%20Strategy%20Summary%20-%20Annex%202.pdf  (Accessed: 24 September 2026).

[69] Healthy Surrey (2026) Surrey Health and Well-Being Strategy - update 2026 | Healthy Surrey. Available at: https://www.healthysurrey.org.uk/about/strategy/surrey-health-and-well-being-strategy  (Accessed: 24 September 2026).

[70] Department of Health and Social Care (n.d.a) 10 Year Health Plan for England: fit for the future - GOV.UK. Available at: https://www.gov.uk/government/publications/10-year-health-plan-for-england-fit-for-the-future  (Accessed: 24 September 2026).

[71] NHS England (n.d.h) NHS England » Service specifications for palliative and end-of-life care: Adults. Available at: https://www.england.nhs.uk/publication/service-specifications-for-palliative-and-end-of-life-care-adults  (Accessed: 24 September 2026).

[72] NHS England (2023) B1675-specialist-palliative-and-end-of-life care-services-cyp-service-spec.pdf.pdf. Available at: https://www.england.nhs.uk/wp-content/uploads/2023/01/B1675-specialist-palliative-and-end-of-life care-servihttps://www.england.nhs.uk/wp-content/uploads/2023/01/B1675-specialist-palliative-and-end-of-life-care-services-cyp-service-spec.pdf.pdfces-cyp-service-spec.pdf.pdf  (Accessed: 24 September 2026).

[73] NHS England (2026) NHS England » Ambitions for Palliative and End-of-life care: A national framework for local action 2021-2026. Available at: https://www.england.nhs.uk/publication/ambitions-for-palliative-and-end-of-life care-a-national-framework-for-local-action-2021-2026  (Accessed: 24 September 2026).

[74] NHS England (2022) Palliative-and-End-of-life care-Statutory-Guidance-for-Integrated-Care-Boards-ICBs-September-2022.pdf. Available at: https://www.england.nhs.uk/wp-content/uploads/2022/07/Palliative-and-End-of-life care-Statutory-Guidance-forhttps://www.england.nhs.uk/wp-content/uploads/2022/07/Palliative-and-End-of-Life-Care-Statutory-Guidance-for-Integrated-Care-Boards-ICBs-September-2022.pdf-Integrated-Care-Boards-ICBs-September-2022.pdf  (Accessed: 24 September 2026).

[75] Department of Health and Social Care (n.d.c) Neighbourhood health framework - GOV.UK. Available at: https://www.gov.uk/government/publications/neighbourhood-health-framework/neighbourhood-health-framework  (Accessed: 24 September 2026).

[76] Hospice UK (n.d.a) Government publishes interim Modern Service Framework for palliative and end-of-life care | Hospice UK. Available at: https://www.hospiceuk.org/latest-from-hospice-uk/government-publishes-interim-modern-service-framework-palliative-and-end  (Accessed: 24 September 2026).

[77] NHS England (n.d.k) NHS England » Universal Principles for Advance Care Planning (ACP). Available at: https://www.england.nhs.uk/publication/universal-principles-for-advance-care-planning  (Accessed: 24 September 2026).

[78] NHS England (n.d.d) NHS England » Dying well in custody charter and self assessment tool. Available at: https://www.england.nhs.uk/publication/dying-well-in-custody-charter-and-self-assessment-tool  (Accessed: 24 September 2026).

[79] National Institute for Health and Care Excellence (n.d.a) Definition | Background information | Palliative care - general issues | CKS | NICE. Available at: https://cks.nice.org.uk/topics/palliative-care-general-issues/background-information/definition  (Accessed: 24 September 2026).

[80] Department of Health and Social Care (n.d.e) One Chance to get it right. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf  (Accessed: 24 September 2026).

[81] Department of Health and Social Care (n.d.d) New approach to care for the dying published - GOV.UK. Available at: https://www.gov.uk/government/news/new-approach-to-care-for-the-dying-published  (Accessed: 24 September 2026).

[82] General Medical Council (n.d.) Treatment and care towards the end of life - professional standards - GMC. Available at: https://www.gmc-uk.org/professional-standards/the-professional-standards/treatment-and-care-towards-the-end-of-life  (Accessed: 24 September 2026).

[83] Marie Curie (n.d.b) National guidelines for end-of-life care | Marie Curie. Available at: https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/national-guidelines-end-of-life  (Accessed: 24 September 2026).

[84] National Child Mortality Database (n.d.) NCMD | The National Child Mortality Database. Available at: https://www.ncmd.info/  (Accessed: 24 September 2026).

[85] Together for Short Lives (2026) Our-strategy-on-a-page.pdf. Available at: https://www.togetherforshortlives.org.uk/app/uploads/2026/05/Our-strategy-on-a-page.pdf  (Accessed: 24 September 2026).

[86] NHS England (n.d.b) NHS England » Ambitions for palliative and end-of-life care. Available at: https://www.england.nhs.uk/eolc/ambitions  (Accessed: 24 September 2026).

[87] UK Parliament (2025) Written statements - Written questions, answers and statements - UK Parliament. Available at: https://questions-statements.parliament.uk/written-statements/detail/2025-11-24/hcws1087  (Accessed: 24 September 2026).

[88] NHS England (n.d.g) NHS England » Palliative and end-of-life care: Statutory guidance for integrated care boards (ICBs). Available at: https://www.england.nhs.uk/publication/palliative-and-end-of-life-care-statutory-guidance-for-integrated-care-boards-icbs  (Accessed: 24 September 2026).

[89] Hospice UK (2024) Hospice Strategy Document 22April2024_0.pdf. Available at: https://hospiceuk-files-prod.s3.eu-west-2.amazonaws.com/s3fs-public/2024-04/Hospice%20Strategy%20Document%2022April2024_0.pdf  (Accessed: 24 September 2026).

[90] Marie Curie (n.d.a) More than 80% of health costs in final year of life 'spent on hospitals'; The work, commissioned by the charity Marie Curie, suggests UK spending for people in the last year of life across health, social care and social security is in the region of £22bn. - Free Online Library. Available at: https://www.thefreelibrary.com/More+than+80%25+of+health+costs+in+final+year+of+life+%27spent+on...-a0826504815  (Accessed: 24 September 2026).

[91] NHS Health Economics Unit (n.d.) Measuring the cost of end-of-life care in the UK - Health Economics Unit. Available at: https://www.healtheconomicsunit.nhs.uk/case_study/measuring-the-cost-of-end-of-life-care-in-the-uk  (Accessed: 24 September 2026).

[92] King’s College London (n.d.a) costs-and-cost-effectiveness-of-adult-palliative-and-end-of-life care-evidence-briefing-summary.pdf. Available at: https://www.kcl.ac.uk/nmpc/ashttps://www.kcl.ac.uk/nmpc/assets/research/costs-and-cost-effectiveness-of-adult-palliative-and-end-of-life-care-evidence-briefing-summary.pdfsets/research/costs-and-cost-effectiveness-of-adult-palliative-and-end-of-life care-evidence-briefing-summary.pdf  (Accessed: 24 September 2026).

[93] Murtagh, F. (n.d.) PowerPoint Presentation. Available at: https://apmonline.org/wp-content/uploads/Fliss_Murtagh_SCDS_10.10.25_Costs_Savings.pdf  (Accessed: 24 September 2026).

[94] May, P. et al. (2026) Specialist palliative care improves patient experience, reduces bed days and saves money: An economic modelling study of home- and hospital-based care - Peter May, Elham Nikram, Therese Johansson, Gemma Clarke, Sarah Mitchell, Irene J. Higginson, Katherine E. Sleeman, Fliss E. M. Murtagh, 2026. Available at: https://journals.sagepub.com/doi/10.1177/02692163261423755  (Accessed: 24 September 2026).

[95] The King’s Fund (n.d.) NHS: Key Facts And Figures | The King's Fund. Available at: https://www.kingsfund.org.uk/insight-and-analysis/data-and-charts/key-facts-figures-nhs  (Accessed: 24 September 2026).

[96] Chong, L.A. et al. (2018) Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program. Available at: https://link.springer.com/content/pdf/10.1186/s12904-017-0267-z.pdf  (Accessed: 24 September 2026).

[97] UK Government (n.d.o) Understanding digital exclusion in Surrey | Surrey-i. Available at: https://www.surreyi.gov.uk/insights/understanding-digital-exclusion-in-surrey  (Accessed: 24 September 2026).

[98] UK Government (n.d.h) Key Neighbourhoods | Surrey-i. Available at: https://www.surreyi.gov.uk/key-neighbourhoods  (Accessed: 24 September 2026).

[99] Shooting Star Children’s Hospices (2023) Joined Adult Hospice JSNA Data 23-25.xlsx. Available at: https://sschospices.sharepoint.com/:x:/r/sites/StrategyPartnerships/Data%20Team/2.%20Data/3.%20Reporting/JSNA/Joined%20Adult%20Hospice%20JSNA%20Data%2023-25.xlsx?d=w009e1e9ec2414e58a942705463059269&csf=1&web=1&e=ohdmKx  (Accessed: 24 September 2026).

[100] Age Space (n.d.) Guide To Palliative Care in Surrey | Local End-of-life care. Available at: https://www.agespace.org/local/surrey/end-of-life/palliative-care  (Accessed: 24 September 2026).

[101] Ashford and St Peter’s Hospitals NHS Foundation Trust (n.d.) Cancer Services. Available at: https://www.ashfordstpeters.nhs.uk/oncology  (Accessed: 24 September 2026).

[102] Carers UK (2025) State of Caring 2025: The cost of caring - the impact of caring across carers' lives | Carers UK. Available at: https://www.carersuk.org/reports/state-of-caring-2025-the-cost-of-caring-the-impact-of-caring-across-carers-lives  (Accessed: 24 September 2026).

[103] Compassionate Sheffield (n.d.) Compassionate Sheffield. Available at: https://www.compassionate-sheffield.co.uk/  (Accessed: 24 September 2026).

[104] CSH Surrey (n.d.) District and Community Nursing - CSH Surrey. Available at: https://cshsurrey.co.uk/our-services/services-we-provide/2582-district-and-community-nursing   (Accessed: 24 September 2026).

[105] Department of Health and Social Care (n.d.b) An overview of the death certification reforms - GOV.UK. Available at: https://www.gov.uk/government/publications/changes-to-the-death-certification-process/an-overview-of-the-death-certification-reforms  (Accessed: 24 September 2026).

[106] Epsom and St Helier University Hospitals NHS Trust (n.d.a) Cancer | Epsom and St Helier University Hospitals. Available at: https://www.epsom-sthelier.nhs.uk/clinical-information-centre-canchttps://www.epsom-sthelier.nhs.uk/clinical-information-centre-cancerer (Accessed: 24 September 2026).

[107] Epsom and St Helier University Hospitals NHS Trust (n.d.b) Children's community home care teams support children to remain at home | Epsom and St Helier University Hospitals. Available at: https://www.epsom-sthelier.nhs.uk/childrens-community-home-care-teams  (Accessed: 24 September 2026).

[108] First Community Health and Care (n.d.) District and Community Nursing service leaflet | First Community Health & Care. Available at: https://www.firstcommunityhealthcare.co.uk/community-nursing-service-information-patients-and-carers  (Accessed: 24 September 2026).

[109] Frimley Health NHS Foundation Trust (n.d.) Cancer care :: Frimley Health NHS Foundation Trust. Available at: https://www.fhft.nhs.uk/services/cancer-care  (Accessed: 24 September 2026).

[110] Gold Standards Framework (n.d.) Transformational Primary Care Training - GSF Accreditation. Available at: https://www.goldstandardsframework.org.uk/training-accreditation/primary-care  (Accessed: 24 September 2026).

[111] Healthwatch Surrey (2025) Residents in East Surrey to have a ‘neighbourhood health team’ | Healthwatch Surrey. Available at: https://www.healthwatchsurrey.co.uk/news/2025-09-16/residents-east-surrey-have-neighbourhood-health-team  (Accessed: 24 September 2026).

[112] Healthy Surrey (n.d.a) About social prescribing | Healthy Surrey. Available at: https://www.healthysurrey.org.uk/community-health/social-prescribing/s-p  (Accessed: 24 September 2026).

[113] Healthy Surrey (n.d.b) End-of-life care | Healthy Surrey. Available at: https://www.healthysurrey.org.uk/community-health/end-of-life-care  (Accessed: 24 September 2026).

[114] Healthy Surrey (n.d.c) Maternity services in Surrey | Healthy Surrey. Available at: https://www.healthysurrey.org.uk/children-and-families/maternity  (Accessed: 24 September 2026).

[115] Healthy Surrey (n.d.d) Surrey Healthy Schools | Healthy Surrey. Available at: https://www.healthysurrey.org.uk/professionals/healthy-schools  (Accessed: 24 September 2026).

[116] Hospice UK (n.d.b) What we do | Hospice UK. Available at: https://www.hospiceuk.org/about-us/what-we-do  (Accessed: 24 September 2026).

[117] National Institute for Health and Care Excellence (n.d.b) Prevalence | Background information | End-of-life care in children | CKS | NICE. Available at: https://cks.nice.org.uk/topics/end-of-life care-in-children/background-information/prevalence (Accessed: 24 September 2026).

[118] NHS England (2021) 1746-principal-treatment-centres-service-specification-.pdf. Available at: https://www.england.nhs.uk/wp-content/uploads/2021/11/1746-principal-treatment-centres-service-specification-.pdf  (Accessed: 24 September 2026).

[119] NHS England (n.d.a) NHS commissioning » Specialised services. Available at: https://www.england.nhs.uk/commissioning/spec-services  (Accessed: 24 September 2026).

[120] NHS England (n.d.c) NHS England » Dying well in custody charter. Available at: https://www.england.nhs.uk/long-read/dying-well-in-custody-charter  (Accessed: 24 September 2026).

[121] NHS England (n.d.e) NHS England » Medical examiner offices. Available at: https://www.england.nhs.uk/patient-safety/medical-examiners/medical-examiner-offices  (Accessed: 24 September 2026).

[122] NHS Surrey Heartlands and NHS Sussex (n.d.) Surrey All Age Continuing Care | ICB - Surrey and Sussex. Available at: https://www.surreysussex.icb.nhs.uk/surrey-all-age-continuing-care  (Accessed: 24 September 2026).

[123] Office for Health Improvement and Disparities (2024) Child health profiles 2024: statistical commentary - GOV.UK. Available at: https://www.gov.uk/government/statistics/2024-child-health-profiles/child-health-profiles-2024-statisitcal-commentary  (Accessed: 24 September 2026).

[124] Phyllis Tuckwell Hospice Care (n.d.) Annual Review | Phyllis Tuckwell. Available at: https://www.pth.org.uk/about/who-we-are/annual-reviews  (Accessed: 24 September 2026).

[125] Princess Alice Hospice (2025) 2025-10-08-PAH-Annual-Report-2025SIGNED_FINAL.pdf. Available at: https://www.pah.org.uk/wp-content/uploads/2025/10/2025-10-08-PAH-Annual-Report-2025SIGNED_FINAL.pdf  (Accessed: 24 September 2026).

[126] Royal Surrey NHS Foundation Trust (n.d.a) Adult Community Health Services | Royal Surrey NHS Foundation Trust. Available at: https://www.royalsurrey.nhs.uk/adult-community-health-services  (Accessed: 24 September 2026).

[127] Royal Surrey NHS Foundation Trust (n.d.b) Cancer Centre | Royal Surrey NHS Foundation Trust. Available at: https://www.royalsurrey.nhs.uk/cc-home  (Accessed: 24 September 2026).

[128] Royal Surrey NHS Foundation Trust (n.d.c) Care-Home Matron Service | Royal Surrey NHS Foundation Trust. Available at: https://www.royalsurrey.nhs.uk/care-home-matron-service  (Accessed: 24 September 2026).

[129] Shooting Star Children’s Hospices (2022) Willow-suites-Christophers-2-1.jpg (1067×1067). Available at: https://www.shootingstar.org.uk/app/uploads/2022/11/Willow-suites-Christophers-2-1.jpg  (Accessed: 24 September 2026).

[130] Shooting Star Children’s Hospices (2025a) 722-Annual-report-2025-Final-digital.pdf. Available at: https://www.shootingstar.org.uk/app/uploads/shared/722-Annual-report-2025-Final-digital.pdf  (Accessed: 24 September 2026).

[131] Shooting Star Children’s Hospices (2028) 1202816480. Available at: https://vimeo.com/1202816480?fl=pl&fe=sh  (Accessed: 24 September 2026).

[132] Shooting Star Children’s Hospices (n.d.a) 9tVdLE C9UY. Available at: https://youtu.be/9tVdLE_C9UY  (Accessed: 24 September 2026).

[133] Shooting Star Children’s Hospices (n.d.b) A Little Light - Dylan James' story. Available at: https://www.youtube.com/watch?v=fCWkDiGOx0A  (Accessed: 24 September 2026).

[134] Shooting Star Children’s Hospices (n.d.c) Bridging the gap in perinatal palliative care - Shooting Star Children’s Hospices. Available at: https://www.shootingstar.org.uk/news/bridging-the-gap-in-perinatal-palliative-care  (Accessed: 24 September 2026).

[135] Shooting Star Children’s Hospices (n.d.d) Discover our SPACE team - Shooting Star Children’s Hospices. Available at: https://www.shootingstar.org.uk/news/discover-our-space-team  (Accessed: 24 September 2026).

[136] Shooting Star Children’s Hospices (n.d.e) Families together | Videos & Movie s on Vimeo. Available at: https://vimeo.com/251282277  (Accessed: 24 September 2026).

[137] Shooting Star Children’s Hospices (n.d.f) Services we provide - Shooting Star Children’s Hospices. Available at: https://www.shootingstar.org.uk/how-we-help/for-healthcare-professionals/services-we-provide  (Accessed: 24 September 2026).

[138] Shooting Star Children’s Hospices (n.d.g) Shooting Star Children's Hospices. Available at: https://www.shootingstar.org.uk/  (Accessed: 24 September 2026).

[139] Shooting Star Children’s Hospices (n.d.h) Take a tour of Christopher's Children's Hospice. Available at: https://www.youtube.com/watch?v=BqgRo9dzDWw  (Accessed: 24 September 2026).

[140] Shooting Star Children’s Hospices (n.d.j) Watch. Available at: https://www.youtube.com/watch?v=BuF5qxIDa3c  (Accessed: 24 September 2026).

[141] Shooting Star Children’s Hospices (n.d.k) Watch. Available at: https://www.youtube.com/watch?v=DFG2JbnOHJM  (Accessed: 24 September 2026).

[142] Shooting Star Children’s Hospices (n.d.l) Watch. Available at: https://www.youtube.com/watch?v=dfvPKBWoZ-k  (Accessed: 24 September 2026).

[143] St Catherine’s Hospice (2025) Untitled. Available at: https://www.stch.org.uk/wp-content/uploads/2025/10/StCH-Annual-Report-Accounts-WEB-SIG.pdf  (Accessed: 24 September 2026).

[144] Surrey and North East Hampshire Community Services (n.d.) Community Nursing - Surrey Adult Community Services. Available at: https://surreynehantscommunityservices.nhs.uk/services/community-nursing  (Accessed: 24 September 2026).

[145] Surrey and Sussex Healthcare NHS Trust (n.d.) Cancer services :: Surrey and Sussex Healthcare NHS Trust. Available at: https://www.surreyandsussex.nhs.uk/our-services/cancer-services  (Accessed: 24 September 2026).

[146] Surrey and Sussex Local Medical Committees (n.d.) Medical Examiner Scrutiny of Community Deaths or passing - Surrey and Sussex LMCs. Available at: https://www.sslmcs.co.uk/resources/me-community-deaths  (Accessed: 24 September 2026).

[147] Surrey Child and Family Health (n.d.) surreychildandfamily.co.uk. Available at: https://surreychildandfamily.co.uk/  (Accessed: 24 September 2026).

[148] Surrey Safeguarding Children Partnership (n.d.a) Child Deaths or passing - Surrey Safeguarding Children Partnership. Available at: https://surreyscp.org.uk/professionals/child-deaths  (Accessed: 24 September 2026).

[149] Surrey Safeguarding Children Partnership (n.d.c) Parents & Carers - Surrey Safeguarding Children Partnership. Available at: https://www.surreyscp.org.uk/parents-carers  (Accessed: 24 September 2026).

[150] The Health Foundation (n.d.a) Building an organisational culture of continuous improvement | The Health Foundation. Available at: https://www.health.org.uk/reports-and-analysis/briefings/building-an-organisational-culture-of-continuous-improvement  (Accessed: 24 September 2026).

[151] The Royal Marsden NHS Foundation Trust (n.d.a) Home page | The Royal Marsden. Available at: https://www.royalmarsden.nhs.uk/  (Accessed: 24 September 2026).

[152] The Royal Marsden NHS Foundation Trust (n.d.b) Outreach, Symptom and Palliative Care Service | The Royal Marsden. Available at: https://www.royalmarsden.nhs.uk/our-consultants-units-and-wards/sutton-surrey/oak-centre-children-and-young-people/outreach-symptom  (Accessed: 24 September 2026).

[153] UK Government (2025a) Early Years Graduated Response Document 2025. Available at: https://www.surreycc.gov.uk/__data/assets/pdf_file/0003/280767/Graduated-Response-Early-Years-Dec-25.pdf  (Accessed: 24 September 2026).

[154] UK Government (2025b) Indices of Deprivation (IoD) 2025 in Surrey | Surrey-i. Available at: https://www.surreyi.gov.uk/dataset/indices-of-deprivation-iod-2025-in-surrey-vd34n  (Accessed: 24 September 2026).

[155] UK Government (2026a) All Age Autism Strategy 2021 to 2026 - Surrey County Council. Available at: https://www.surreycc.gov.uk/community/autism/strategy  (Accessed: 24 September 2026).

[156] UK Government (2026c) Surrey Medical Policy January 2026. Available at: https://www.surreycc.gov.uk/__data/assets/pdf_file/0017/336140/Surrey-County-Council-medical-policy-January-2026.pdf  (Accessed: 24 September 2026).

[157] UK Government (n.d.a) Additional Needs and Disability Policies and strategy documents - Surrey County Council. Available at: https://www.surreycc.gov.uk/children/support-and-advice/local-offer/practitioners/resources/policies  (Accessed: 24 September 2026).

[158] UK Government (n.d.b) Critical Incident Support | Surrey Education Services. Available at: https://surreyeducationservices.surreycc.gov.uk/Page/42325  (Accessed: 24 September 2026).

[159] UK Government (n.d.c) Death registration appointment - Surrey County Council. Available at: https://www.surreycc.gov.uk/birth-death-and-ceremonies/death/registration-appointment  (Accessed: 24 September 2026).

[160] UK Government (n.d.l) Statistics about births and conceptions: parental characteristics, home births and birthweight | Surrey-i. Available at: https://www.surreyi.gov.uk/dataset/statistics-about-births-and-conceptions-parental-characteristics-2lnwx  (Accessed: 24 September 2026).

[161] UK Government (n.d.m) Surrey Coroner - Surrey County Council. Available at: https://www.surreycc.gov.uk/birth-death-and-ceremonies/death/coroner  (Accessed: 24 September 2026).

[162] Woking and Sam Beare Hospices (n.d.) Published reports and accounts - Woking & Sam Beare Hospices. Available at: https://wsbh.org.uk/about-us/information-governance/report-and-accounts  (Accessed: 24 September 2026).

[163] Office for National Statistics. Population projections for local authorities by single year od age and sex, England 2022 based. 2025. Population projections for local authorities by single year of age and sex, England - Office for National Statistics

[164] Institute of Public Care. Projecting Older People Population Information System (POPPI). Oxford Brookes University. Projecting Older People Population Information System

Appendix 1: Overview of POPPI data for EOLC JSNA

The population of residents aged 65 and over in Surrey is expected to increase from around 242,000 in 2025 to around 314,000 in 20451. This is a percentage increase of 29.8%.

If the prevalence of health conditions remains the same amongst our residents, we will also see an increase in the number of people with those health conditions in 2045 because the population will be larger.

The Projecting Older People Population Information System (POPPI)2 applies this population increase to the prevalence of health conditions and uses this to estimate how many people will be affected in the future. This means that if more people have the condition now, POPPI will predict even more people will have it in the future as the population is increasing.

Currently, POPPI predicts that the number of people aged 65 and over with cardiovascular disease will rise from 78,423 people in 2025 to 102,830 people in 2045. It also predicts the number of people who are 65 years or over and have diabetes will rise from 37,372 in 2025 to 48,886 in 2045, and the number of people who are 65 and over with dementia will rise from 18,882 in 2025 to 28,233 in 2045.

These predictions do not consider improved diagnosis, something which could increase the recorded prevalence of dementia, or improved treatment or prevention strategies which could decrease the prevalence of cardiovascular conditions and diabetes. They should therefore only be treated as approximations if used to plan services. [163][164]

Appendix 2 : Hospice Annual Reports

• Shooting Star Children’s Hospices: Annual Report [130]

• Phyllis Tuckwell Hospice; Annual Review | Phyllis Tuckwell [124]

• Princess Alice Hospice; 2025 Trustees' Annual Report [125]

• St Catherine’s Hospice: Annual Report and Accounts [143]

• Woking and Sam Beare Hospice: Published reports and accounts - Woking & Sam Beare Hospices

Appendix 3: Hospice data

Adult Hospice JSNA Graphs [99]

The data presented in this appendix provides a valuable overview of hospice activity across Surrey and helps to illustrate the scale and breadth of support provided by the county's adult hospices.

However, it should be interpreted with an understanding of the limitations inherent in bringing together information from organisations that have developed different reporting systems, datasets, service models and definitions over time.

While considerable effort has been made to align and standardise the information presented, there remain variations in how activity, contacts, referrals, outcomes and service lines are defined, recorded and reported by individual hospices. In some instances, estimates, assumptions or locally derived definitions have been used where directly comparable data was not available. As a result, caution should be exercised when interpreting differences between organisations, and the data should not always be regarded as providing a fully like-for-like comparison.

These limitations do not diminish the value of the analysis, but they do highlight the challenges of determining whether comparisons are always being made on a true "apples with apples" basis. The data is therefore most useful in understanding overall patterns, trends, scale of activity and emerging system-level themes, rather than drawing definitive conclusions about the relative performance or activity of individual providers.

Surrey's adult hospices are increasingly working collaboratively to improve the consistency, quality and utility of shared data. Over time, it is anticipated that this will provide increasingly consistent and comparable insight, helping to further strengthen future iterations of this JSNA and wider strategic planning across Surrey.

The chart shows quarterly admissions from just under 900 to just over 1,000 across the period. The highest displayed total is 1,023 in Q1 FY 24-25, and the lowest displayed total is 897 in Q4 FY 24-25. Admission volume varies across each of the included hospice’s; PAH, PTH, Woking and Sam Beare and St Catherine’s.

The chart shows a gradual increase across FY 23-24, a marked dip in Q1 FY 24-25 to 102 days, and then a strong recovery from Q2 FY 24-25 onwards. Q4 FY 24-25 is the highest point shown at 123 days. This suggests community end-of-life care duration has generally increased after the early FY 24-25 dip. Over the past two years Q1 show the lowest average duration of EOL Care delivered in the Community and in Q4 the highest.

The values stay within a narrow range of13 and 15 days suggesting a stable pattern across quarters in the past two financial years. The main dip appears in Q1 FY 24-25, followed by a return to around 15 days in Q2 and Q3 FY 24-25.

The total number of visits remains high across the period, with Q3 FY 24-25 shown as the peak at 3,731 visits. From the data submitted PTH contributes the largest share throughout, while PAH and St Catherine’s contribute smaller portions. However this could be a result of difference in method of recording contacts or other factors, as such evidenced conclusions cannot be made based on the data provided.

The chart shows higher activity in FY 23-24, with totals around 2,400 to 2,730 visits, followed by lower values in parts of FY 24-25, including Q3 and Q4.

The chart shows quarterly wellbeing contact totals ranging from 2,193 to 2,613 contacts. Overall activity increased from 9,483 contacts in FY 2023-24 to 9,892 contacts in FY 2024-25, representing a 4.3% year-on-year increase. The highest number of wellbeing contacts was recorded in Q1 FY 2024-25 (2,613 contacts).

Community deaths are consistently much higher than inpatient unit deaths across all displayed quarters. Community deaths range from just over 500 to around 586, while inpatient unit deaths are lower, between roughly 124 and 168.

The total number of deaths within the hospice varies across quarters, with a higher point in Q4 FY 23-24 at 168 and lower values around 124 to 143 in other periods. The stacked format shows the provider contribution to the total.

The total number of community deaths across the period vary from 516 to 586, averaging at 183.8 per month.

To note, there is a significant increase in the number of community patients discharged from St Catherines in Q3 and Q4 of has increased the overall total of discharges. This may be due to a data issue and would need further investigation before conclusions can be made from the data.

The visual shows that cancer referrals form the larger share for each hospice and year displayed. Woking and Sam Beare has the highest displayed cancer proportion, rising from 76% in FY 23-24 to 85% in FY 24-25. St Catherine’s is shown at 63% in FY 23-24 and 65% in FY 24-25.

Specialist nursing contacts peak within Q1 of each financial year, reducing as the year goes on, this trend is seen more in Financial Year 24-25, with the peak at 8,249 in Q1 FY 24-25 and a lower value of 6,749 in Q4 FY 24-25.

Paediatric Palliative Care JSNA Graphs

Shooting Star Children’s Hospices paediatric palliative care support 2023/24 and 2024/25. To protect confidentiality, counts below 5 are suppressed. As small numbers can cause variation between periods, trends should be interpreted with caution.

Graphs 11 to 14 can be found in the Bereavement JSNA, giving details of bereavement referrals and care of the body after death.

Appendix 4: Marie Curie Surrey Companions in Care-Homes Evaluation report

Results

Impact and experience

The data on Advance Care Plans, surveys, emails, Dynamics records and number of visits is presented alongside themes from the interviews.

Residents often either had an ACP in place or lacked capacity to have EOL planning conversations

In total, 5 ACPs were recorded. One of the aims of the project was to promote ACP conversations with residents, although there were no Key Performance Indicator targets set for this. The impetus for those that did take place came from the Life Cafe work where people were encouraged to think about what is important to them at the end-of-life.

There are a number of reasons why the number of ACPs was lower than anticipated. During a session held with staff from one care-home, they highlighted that the home were already aware of the importance of ACP conversations.

[Named home] uses the ReSPECT process and is very aware of the need for advance care planning. Email feedback

Some residents had reduced capacity due to conditions such as dementia. These residents were no longer able to engage with planning around end-of-life and for them, such conversations needed to have taken place at an earlier stage.

“Getting ACPs done in a care-home setting is really difficult because most of them have got something in place already. And those that don't [have an ACP] don't have capacity. I don't think it's the right environment to get people's advanced care plans in place. I think that's a conversation that needs to be done before they're going to the care-home.” Interview with VSO

This has been a finding across similar work in other areas we have evaluated that aimed to generate ACPs in care-homes.

Residents were able to share what is important to them, were aided to maintain physical health and enjoy companionship

After each companion visit, volunteers were asked to provide a summary of the visit and to select an impact theme and outcome of the visit. Volunteers can select more than one impact theme per visit. The impact themes are based on Marie Curie's Impact Framework, which describes where Marie Curie staff and volunteers have their greatest There are six themes of impact in the framework:

Image 1: Impact Framework themes

These are accompanied by a set of 'I Statements' written from the perspective of people with a terminal illness and those close to them. More information on this can be found in our Library by following this link: Marie Curie Impact Framework guidance for staff and volunteers.

The most commonly selected outcomes for residents were for companionship, followed by emotional support, with a limited amount of information giving and signposting.

Care-home staff, particularly activity coordinators appreciated the amount of time that volunteers were able to spend with residents particularly those who, due to mobility issues are unable to leave their rooms join in group activities of their own accord.

Care-home staff have a limited amount of time to spend with residents who are unable to leave their room.

"The wellbeing coordinators only have limited time to spend with the bed bound residents who otherwise only have contact with carers who are there to wash, feed and provide medication and don't have time for proper conversations."

The volunteers enabled these isolated residents to enjoy some companionship. Volunteers were also able to remind residents to drink to keep their fluid levels up and avoid UTls.

“It is also good to know that there is someone there able to perhaps remind them to drink their fluids to keep them comfortable and help prevent urine infections” Survey response

Some residents had been for a walk with Companion volunteers in the grounds of the home, combining a chat with some exercise promoting physical wellbeing.

The walk at the end of our visit provided gentle physical movement before [the resident's] lunch. Dynamics record

Volunteers were positive about their impact on residents and found their interactions with residents enriching

The volunteers who were interviewed were very positive about their work as Companions. The presence of the volunteer in the home, talking and hearing her stories helped one new resident feel more comfortable.

Enabled [Name] to feel more settled in her new environment. Dynamics record

Many of the residents that the volunteers visited had very limited visitors and therefore particularly appreciated being able to share a cup of tea and talk with someone who is interested in them.

"People like to feel like someone is listening to them" Volunteer interview

Volunteers felt working as a Companion was mutually beneficial because the resident was able to talk about their lives and things they are interested in, and they enjoy hearing their stories and learning from them.

"They win and I win - I'm interested in their amazing lives."

One volunteer felt that the care-home staff were not at all engaged with the Companions service. For example, if she asked staff a question about the resident she was due to visit, they were too busy or dismissive.

"Sometimes staff aren't engaged, I feel they think I am wasting their time asking questions." Volunteer interview

This was not the case with the other volunteer interviewed who felt very welcomed and appreciated by staff.

Set up and administration of the pilot

In our fieldwork staff and Volunteers spoke about some challenges in setting up and administering the pilot.

Attempting to engage with the care-homes was time consuming and challenging Care-homes were difficult to engage via email and over the phone. Eight care-homes were contacted and only three homes were involved in the project. Changes in care-home staffing, specifically the management team, meant that relationship building was challenging, and information was not shared with new staff. A key enabler was meeting in person rather than relying on email or phone contact.

“Face-to-face contact definitely made a difference because then they see you and they take more notice of you”. Interview with VSO

Another enabler was approaching a home that was in the same parent group as it was easier to make contact with the right people. The activity coordinators rather than care-home managers were the key contacts needed to enable the engagement.

Volunteer recruitment was challenging which meant volunteers have only been working in the care-homes for six months

Due to the time it took to engage homes and onboard volunteers, the first volunteer

started in October, six months after the volunteer coordinator started in post. This delay has limited the amount of time that volunteers have been active within the care-home.

Conclusion

The Companion volunteers have made a positive impact for care-home residents, staff and volunteers. The value of the companionship and emotional support for residents was highlighted, along with the benefit to volunteers who enjoyed talking and listening to residents. The aim to increase ACP conversations and develop plans has been less successful as plans have either been in place or residents had limited capacity to complete a plan. This pilot has added to our growing evidence that care-homes are not the best place for ACP conversations and planning.

Learning

Care-homes are difficult to engage with and this delays time limited projects

This is the third project that the Marie Curie Impact & Evaluation team have evaluated where the main aim is to increase ACP conversations in care-homes. All of the projects have struggled with engagement from care-homes, particularly via email or telephone communications.

ACP conversations within care-home settings does not routinely lead to the creation of ACPs, suggesting that advance care planning needs to happen at an earlier stage of people's lives

The focus of the work within the Surrey care-homes was to generate ACP plans alongside the Companion service. Again, in an echo of our previous work, care-home residents usually either have a plan in place or lack the capacity to undertake a plan.

Half of the time allocated for this pilot was required for recruiting and onboarding volunteers

Future projects should consider that unless there are already volunteers in place, recruiting

and onboarding volunteers can take up to six months. This limits the amount of time available to demonstrate the impact of a service with one year's funding.

Appendix 5: Semi-structured interviews

Semi structured interviews took place with staff members from the following organisations:

• Surrey Heartlands ICB

• Surrey and Sussex ICB

• Surrey County Council

• Surrey Public Health

• Royal Surrey Foundation Trust

• Royal Surrey County Hospital

• Ashford St Peter’s Hospital

• Epsom Hospital

• GPs

• HCRG

• Dorking Healthcare

• We Are With You

• Mindler

• Surrey and Borders Partnership Trust

• Phyllis Tuckwell Hospice

• Princess Alice Hospice

• St Catherine’s Hospice

• Shooting Star Children’s Hospice

• Jigsaw South East

• Momentum

• Mentell

• Transform Housing