Bereavement JSNA

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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

Nanu Chumber-Stanley, Surrey County Council Public Health All Age Suicide Lead

Acknowledgements

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

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

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

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

The Surrey Adult Hospices Collaborative, Child Death Review Team, Momentum Children’s Charity Children’s Charity, Surrey Coalition for Disability, Surrey Minority Ethnic Forum (SMEF), Transform Housing group, Rentstart and Healthwatch Surrey VCFSE for undertaking engagement with people with lived experience and service-users.

Woking and Sam Beare Hospices who supported with data and review.

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

Experts by experience reviewers from across health, Local Authority, VCFSE and hospices.

People with lived experience who have supported the JSNA with their stories and expert by experience review of the JSNA.

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

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

Glossary of Terms

Foreword

Bereavement is the experience of losing someone who matters to us. Grief is our response to being bereaved, and is unique to each of us, with a range of possible responses in mind, body and spirit. Our journey of grief depends on the circumstances of the death, the relationship we had with the person who has died, and our own personality, previous life experiences and losses. Social, cultural and religious factors impact how we respond. Grief can be a longer and more complex process following a sudden, unexpected or traumatic death, or the death of a child.

Experiencing bereavement and grief is part of being human and is often easier when we share our experience with others. There is no right or wrong way to grieve, and it takes time, with many recognisable stages but no fixed path. [2] The transition from acute grief to a stable psychological response to grief occurs gradually, with the bereaved having accepted permanency and meaning of the loss. However, for some bereaved individuals, this transition does not occur, and they remain in a state of chronic or complicated grief or prolonged grief disorder.[3]

This Joint Strategic Needs Assessment (JSNA) is a whole system effort to represent the needs of people of all ages in Surrey who experience bereavement and grief. It is the result of extensive stakeholder engagement, data analysis and collaboration with practitioners, professionals across sectors and people with lived experience. This JSNA aims to understand what supports people in their grief, what the current state is of services and support for bereavement and grief and whether this meets the needs of the people of Surrey, or where there may be gaps and inequity.

We have heard how bereavement, grief and the meaning of loss is unique to each person, with religion, culture, demographics and social determinants all playing a part in each person’s experience and needs. The JSNA will demonstrate the breadth and diversity of needs of bereaved people in Surrey and discuss what we can do as a system to meet these needs and enable quality of life from supporting quality of death and bereavement.

1. Executive Summary

1. Key unmet needs

People experiencing complex, traumatic or prolonged grief

Whilst most bereaved people adapt with support from family, friends and community networks, a significant minority experience more complex bereavement needs and require timely access to specialist support, counselling or mental health services.

Earlier identification and support

Many people report not knowing what support is available, how to access it, or when they should seek help. Opportunities for early intervention are inconsistent.

Support for specific groups

The report highlights particular needs amongst:

• children and young people

• people from ethnic minority communities

• people experiencing sudden, traumatic or unexpected deaths

• people who are socially isolated

• working-age adults balancing bereavement with employment and caring responsibilities

Workplace support

Bereavement is often poorly recognised within workplaces despite its significant impact on wellbeing, productivity and retention.

2. Most significant inequalities

Unequal access across communities

Awareness and use of bereavement services appears to vary significantly between communities and population groups.

Access to bereavement support is heavily dependent on where and how someone died.

Cultural and faith-related inequalities

People from different cultural, ethnic and faith backgrounds may not always find support that reflects their experiences, beliefs or preferences.

Geographic variation

Access to bereavement support is variable across Surrey, creating a "postcode lottery" in some areas.

Digital exclusion

Increasing use of online support can create additional barriers for some groups.

Children and young people

Access to age-appropriate bereavement support is not consistently available across the system.

3. Capacity gaps

Lack of system-wide visibility

There does not appear to be a comprehensive understanding of total bereavement support capacity across statutory, voluntary, community and faith sectors.

Insufficient specialist provision

Demand for specialist bereavement interventions may exceed available capacity in some areas.

Workforce and volunteer capacity

Many services rely heavily on charitable funding, volunteers and short-term funding arrangements, creating fragility within the system. There is a need for sustainable bereavement workforce and volunteer capacity.

Capacity to meet future demand

The report describes increasing deaths and an ageing population, but there is limited modelling of what this means for future bereavement support demand.

Data and outcomes

Inconsistent data collection makes it difficult to understand demand, outcomes and unmet need at a system level.

4. Recommended priorities for investment and service development (2026-2035)

1. Develop a county-wide bereavement strategy

Create a coordinated Surrey-wide approach that aligns NHS, local authority, voluntary sector, education, faith and employer contributions.

2. Invest in a public health approach to grief, death and loss

Strengthen compassionate communities, death literacy, peer-support and community-based responses that enable more people to be supported well through existing networks.

3. Increase specialist bereavement capacity

Improve access for people experiencing prolonged, traumatic or complicated grief through clearer pathways and sustainable specialist provision.

4. Improve support for children and young people

Develop more consistent and equitable access across Surrey.

5. Embed bereavement within emotional wellbeing and prevention strategies

Recognise bereavement as a contributor to mental ill health, social isolation, suicide risk and wider health inequalities, whilst avoiding the medicalisation of normal grief.

6. Support bereavement-friendly workplaces and education settings

Work with employers to improve bereavement awareness, policies and support arrangements.

7. Develop a long-term demand and capacity model

Project need to 2040, taking account of demographic change, increasing deaths and changing patterns of support.

8. Strengthen data and outcomes measurement

Develop shared metrics across providers to better understand need, utilisation, inequalities and impact.

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 emotional wellbeing needs of our Surrey residents who have been bereaved and to make recommendations for change across all sectors, commissioning and providing services and support for bereavement.

The JSNA will achieve the following:

• To reflect the diverse needs of Surrey’s population who have been bereaved.

• To define the current state of bereavement services and support for the population of Surrey.

• To explore unmet need and where there are barriers or challenges to meeting the needs of Surrey’s population who have been bereaved.

• Outline changes, recommendations and priorities for bereavement provision.

The JSNA will serve as a resource for Continuing Professional Development and evidence-based practice for practitioners, providing recommendations and guidance for Continual Quality Improvement for services. [4] For commissioners, the data, insights and recommendations will enable population health needs-based approach as part of decision making and evidence-based commissioning, as outlined in the NHS England Strategic Commissioning Framework. [111]

The JSNA will provide insights into the social, cultural and religious practices supporting bereavement in different communities and provide resources and insights to enable compassionate and professional curiosity, serve as a part of a learning culture and promote inclusion within practice, services and organisations.

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

What does grieving well mean to the people of Surrey?

What contributes to quality of support for grieving well?

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. The COVID-19 pandemic resulted in excess mortality within the UK, with the death or passing rate continuing to be higher than it had been pre-pandemic. [112]

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 emotional wellbeing needs of people of all ages resident in Surrey who have been bereaved.

The JSNA does not include early pregnancy loss, late pregnancy loss and stillbirth. We acknowledge the importance and needs of those who have experienced loss and stillbirth. 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.

3. Local context for bereavement in Surrey

3.1. Death or passing and bereavement in Surrey over the life course

Taking a life-course approach, this section will detail bereavement provision and support in Surrey.

As of 2024, there were estimated to be 1,248,649 residents in Surrey (Surrey-i, 2024). [5] ( As with the national picture, deaths post-pandemic remained elevated, with Office for National Statistics 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 over time. [5] There are inequalities in life expectancy in Surrey, many of which are preventable. Inequalities exist related to age, ethnicity, disability and social exclusion.

Research estimates that for every death, nine people are affected by bereavement. [6] Using Surrey data of deaths in 2024 (2024 chosen as a representative year, as national data discussed above shows deaths returned to pre-pandemic levels as of 2024), this equates to an estimated 95,670 people having been bereaved as a result of 10,630 deaths.

3.1.1. Data of bereavement following death of a baby, infant, child or young person

Between April 2023 and March 2025, 104 babies, children and young people died in Surrey. For every baby, child or young person who has died, their deaths represent loss for parents, siblings, grandparents, carers, guardians, extended family and friends. [7]

Based on the above research by University of Cambridge, for the 104 deaths this approximates to 936 people having been bereaved of an infant, child or young person. Surrey Child Death Overview Panel team data indicates 62 siblings/half siblings were bereaved between 2023 and 2025 (data excluded those where siblings also died or they are out of the country).

3.1.2. Current state of bereavement provision for children and young people who have been bereaved and people who have been bereaved of a baby, infant, child or young person

Following the launch of the Three Year Maternity Plan in 2023 [8] women and birthing people experiencing the loss or death of their baby on maternity or neonatal units (stillbirth and infant death) have access to a bereavement midwife within Royal Surrey County Hospital (RSCH), Frimley Park Hospital, East Surrey Hospital, Ashford and St Peter’s Hospitals (ASPH) and Epsom Hospital maternity units. Provision varies, with units offering support seven days a week, for between 3- and 12-months support post death, with some units asking parents to return to the hospital and others providing support in the community and with some offering memory-making. Bereavement midwives are funded by NHS Trusts and maternity units to provide care.

Improving access to maternal and perinatal mental health is a joint work stream between the Maternity Transformation programme and Mental Health programme. [9] Parents who have been bereaved of their baby on neonatal units can also access a neonatal psychotherapist. The psychotherapists at Royal Surrey County Hospital (RSCH), Ashford St Peter’s Hospital (ASPH) and East Surrey Hospital are part of Surrey and Borders Partnership Trust, providing psychotherapeutic support on the neonatal units. Psychotherapy provision is variable, with sessions on the units dependent on the level of neonatal unit care. ASPH, as a level 3 neonatal unit has the highest number of hours, with RSCH having the lowest number of hours as a level 1 Special Care Baby Unit (SCBU). Psychotherapy hours on the neonatal units in ASPH, RSCH and East Surrey Hospital were below the hours recommended by the Neonatal Operational Delivery Network (ODN) in 2024 and by best practice. However, Surrey as of 2024 was not an outlier in its level of provision of psychotherapy and/or psychological support on neonatal units. Frimley Park Hospital has counselling provision from a specialist maternity counsellor and psychotherapist as part of its maternity and neonatal unit for women and birthing people and parents, following the bereavement of their baby on the unit. NHS England » Maternity Transformation Programme [9]The programme was initially funded by NHS England, with funding then being taken on in full by maternity and neonatal units.

In a service evaluation conducted by Surrey and Borders Partnership Trust in 2023, it was found that 78% of neonatal staff in RSCH, ASPH and East Surrey reported they had a new understanding of how to help address the psychological needs of babies and families. A consistent theme from feedback was that neonatal staff felt they were better able to undertake their core nursing duties on the unit and had reduced moral injury, as the emotional and wellbeing needs of the parents were being met by a trained professional who was present and accessible on the unit.

Hospital chaplains provide support for people of all faiths following death. RSCH and Frimley chaplains have both spoken of providing support to parents and birthing people following the loss of a baby. The chaplain provides religious and spiritual support, including holding a service in the hospital for parents who have experienced loss. In RSCH, the chaplain supports funeral arrangements, including personalised services at Guildford crematorium, or more formal services with a congregation. The RSCH chaplain supports people of all faiths. In Frimley Park Hospital, the hospital chaplain supports people of all faiths and links into faith groups within the local area. The chaplaincy service holds memorial services for people who have died within the hospital.

Child Death Review (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 CDR nurses provide skilled emotional and practical support in the hours and weeks following death. Referring and linking into services and support on behalf of the parents and family.

The Shooting Star Children’s Hospices perinatal team provides charitably funded in-reach into Ashford St Peter’s Hospital NICU, providing a Perinatal Palliative Clinical Nurse Specialist (CNS) and family support worker. The team works alongside neonatal and obstetric teams to provide bereavement care, memory making and peer support groups on the unit, with links to wider hospice provision and the Shooting Star Children’s Hospice Specialist Paediatric Palliative Care Team (SPACE). Bridging the gap in perinatal palliative care  - Shooting Star Children’s Hospices [116]

The Surrey and Borders Partnership (SABP) NHS Trust Maternity Related Fear, Loss and Trauma service (AFLoaT) provide mental health support for women and birthing people with moderate to severe trauma following birth, including infant loss. The team provide psychological one-to-one or group support for up to one year following referral. Maternity related fear, loss and trauma (AFLoaT) : Surrey and Borders Partnership NHS Foundation Trust [10] SABP are commissioned by adult mental health ICB funding.

The SABP NHS Trust Perinatal Mental Health Service (PMHS) offers support for women and birthing people in the perinatal period who present with postpartum (after birth) Post Traumatic Stress Syndrome (PTSD) and postpartum (after birth) psychosis. Types of perinatal mental health problems : Surrey and Borders Partnership NHS Foundation Trust [11] SABP are commissioned by adult mental health ICB funding.

Maternity and neonatal units and psychotherapists on neonatal units refer into AFLoaT and PMHS if the women or birthing person requires ongoing support in the community post discharge from the maternity or neonatal unit.

Children under the age of five do not have access to ICB commissioned mental health support if they have been bereaved. For children over the age of five the ICB commissions Mindworks Home :: Mindworks Surrey [12] , provided by the Surrey Wellbeing Partnership, Barnardo’s, National Autistic Society and SABP NHS Trust. Care is provided for children and young people over 5 years of age up to 18 years with moderate to severe mental health needs. Mindworks is not commissioned to provide bereavement support, or specialist bereavement support. Children and young people can access services if they experience anxiety or depression. Following semi-structured interviews it was discussed that bereavement has not been raised as a referral reason for accessing Mindworks services.

Surrey County Council Early Years team funds bereavement support for early years settings, which is delivered through the early educational effectiveness teams. The teams support the early years practitioners in the setting to support the children in their care, if a child from their setting has died. The team will also support the setting in supporting the parents of children in the setting in speaking to their children who have experienced bereavement of their friend. This support includes all deaths, including sudden and traumatic death. If a child in a setting experiences a bereavement outside of the setting, the early years effectiveness team would not be funded to support. The support is also not available for children who are not in childcare.

Schools in Surrey have access to support and resources to prepare for and respond to bereavement and child deaths. The Surrey Healthy Schools Approach supports whole-school practice, including bereavement policies, pastoral support and signposting, alongside critical incident guidance available through the Surrey Education Services Hub.

Following a child death, Area Schools Officers (ASOs) provide immediate support to school leaders, helping them navigate the response and coordinate support from other services. ASOs work alongside Educational Psychologists, who provide consultation and advice to help school staff understand and respond to the impact of bereavement, identify children and young people who may be particularly affected, and plan appropriate support and signposting. If the death is a suspected suicide, all schools are offered a CYP Mental Health Multi-Agency Triage, which brings together relevant partners to identify children who may be particularly affected and agree support and safety planning.

The Child Death Nurses provide statutory funded support in schools for teachers and close friends following the unexpected death of a child or young person, the team are not commissioned to support with expected death. The Child Death Nurses signpost to Education Services and Shooting Star Children’s Hospices specialist bereavement service. VCFSE organisations discussed below also provide in-reach into schools, to give teachers advice, information and tools and resources in supporting friends of the bereaved. Provision within schools is variable, with academies and private schools offering differing bereavement support to statutory funded schools.

Social prescribing as community navigators for children and young people is variable across Surrey, with roles linked to Additional Roles and Responsibilities (ARRS) within primary care and individual VCSFE providers, instead of a system approach. NHS East Surrey and North West Surrey (pre April 2026) have some social prescribing provision to support navigation and signposting to services and support for emotional wellbeing of children and young people. Surrey County Council convened a CYP Social Prescribing forum to support links between social prescribing practitioners and oversight of provision across Surrey. A limitation identified was social prescribers’ knowledge of the breadth of NHS and VCSE emotional wellbeing support available across Surrey. Data was not available to establish if NHS social prescribers support access to bereavement services. VCSFE providers have community development workers and family support workers as part of their provision to support navigating of services and to support access to social prescribing charitably funded activities.

Momentum Children’s Charity provides charitably funded bereavement support for families who have been bereaved of a child. Echoes supports families of children who have already been known to Momentum Children’s Charity in life and families who have not previously been known to the service. Echoes supports all bereaved families, including sudden and traumatic death, including suicide and in some cases homicide. The charity supports the entire family through their family support services, assistance with funeral arrangements, referral to counselling and creative therapies, memory-making, respite breaks and peer-support groups. There is no cut off time to refer to the service post death and no cut off for the length of time for support.

The need for personalised care without time constraints was raised within insights from bereaved parents and siblings from Momentum Children’s Charity’s annual survey. The responses highlighted that strong emotions could surface unexpectedly and were hard to manage alongside daily responsibilities. See appendix 1 for more information.

“I'm only just coming out of deep shock four years later.”

For some siblings, the emotional load was visible even when they struggled to articulate it:

“He couldn’t put it into words — the feelings were there but he didn’t know how to say them.”

Momentum Children’s Charity has respite cabins which families can use through the year along with a riverboat moored at Shepperton Marina, with many booking for the anniversary of their child’s death. The service offers ten sessions for counselling, alongside creative therapies and group events to bring families together, including specific groups for mums, dads and siblings. The variety of support available, enabling a personalised approach, is important to families and includes counselling, social prescribing, peer support and respite. With families saying support helps makes sense of overwhelming feelings with outcomes such as reduced isolation, improved emotional wellbeing and improved social integration.

“Therapy helped me break down things that felt big. I left feeling encouraged and hopeful.”

“Creating James’ quilt/blanket. It’s a hug from James and goes wherever we travel.”

“Being checked on makes it feel like we aren’t alone and are actually part of a community.”

“The cabin trip was exactly what we needed — a quiet space to reflect.”

“After we lost Rory, we were able to stay in the cabin. We had just gone through six weeks of emotional hell, and this was our first place to go without Rory and before he was buried — and this helped us so much.”

“We made memories on the riverboat… it meant so much to us.”

All bereavement packages are personalised to the person and family. The team are trying new types of support for young children. Momentum Children’s Charity discussed they want to build more support for teens.

The support is provided as a mix of in-reach into eight hospitals within southeast London, Surrey and Sussex and referrals from outside of hospitals. Momentum Children’s Charity is based in The Royal Marsden and within Surrey in St Peter’s Hospital, RSCH, Epsom Hospital and East Surrey Hospital. Momentum Children’s Charity Children's Charity [13] They are not currently based at Frimley Park Hospital.

Momentum Children’s Charity can provide family centred support to children and families bereaved through homicide. All referrals are assessed on a case by case basis to ensure support is appropriate to the complexity of the circumstances.

Their approach includes:

• Consistent regular contact from a bereavement support worker.

• Access to counselling, creative therapies and respite breaks, paced to individual readiness.

• Flexible, long‑term support.

• Practical guidance including funeral planning and memory‑making where appropriate.

• Partnership working to support coordinated, wraparound care.

Jigsaw South East is a children's bereavement charity covering all of Surrey and surrounding areas of Sussex and Kent. They work with children and young people up to the age of 18, who are facing or have experienced the death of a loved one (including a sibling, parent or carer). Support is offered for both pre and post bereavement referrals and also following unexpected/traumatic deaths. 

Jigsaw Southeast has a helpline (Contact us - Jigsaw South East) which is open to anybody supporting a bereaved child or young person, including family members or professionals. They also offer training for schools to help them to support grieving children and young people. For those who refer into the service, they offer an assessment of needs to identify the current level of support needed. They provide a community of support for all referred families, who are invited to events and activities which bring other grieving families together. As well as access to Newsletters and support resources. 

For those who have higher support needs, they are allocated a trained grief support worker who works closely with the parents and professionals around a child to identify their support needs. In the pre-bereavement space, support workers support families in how to have conversations with children and young people facing the death of a loved one. They can also provide one-to-one support if required or work closely with a school professional to do this Following a death, families can access a range of support according to their needs, including bereavement groups, individual support plans and one-to-one bereavement support. The grief support sessions are not counselling but offer a safe space to share feelings, process grief and identify ways to continue bonds and remember their loved one who has died. Where support is required for moderate to severe bereavement related mental health needs, the team will signpost to alternative services who can met this need. 

The team discussed challenges in capacity due to funding limitations and also further challenges in engaging with teens. They are currently working with their Young Ambassadors to develop this area further.

Shooting Star Children’s Hospices (SSCH) Specialist Bereavement Service is charitably funded and provides psychosocial care to people of all ages who have been bereaved of a baby, child or young person up to 18 years of age, other than those who have been bereaved through suicide or homicide, or families who have been bereaved of a baby born at less than 22 weeks gestation. The family do not need to have been known to the hospices in life to receive care from the Specialist Bereavement Service. The service includes:

• Family support workers 

• Counselling  

• Arts therapies 

• Trauma therapies 

• Complementary therapies 

• Social workers 

• Care events 

The Specialist Bereavement Service (SBS) provides support for three years and three months following the death of baby, child or young person who was resident in Surrey and those in southwest London and northwest London. Upon receiving the referrals, families are offered personalised support to meet identified needs, with Core, Enhanced and Intensive support tiers representing levels of need.

Where safeguarding concerns are identified, including suicidal thoughts, intent or plan, this is reported within one hour to the Safeguarding Duty in working hours and the clinical on-call out of hours. A Mental Health Escalation Pathway (MHEP) is used to direct to urgent care services where there is immediate risk of harm, or GP review where there is no immediate risk of harm.

Family support workers (FSW) work in the hospices, hospitals and the community across Surrey, southwest London and northwest London, working from epicentres within the region to support continuity of care for families. The team provides emotional and social support for families and children both in life and when bereaved. The team provides practical support including linking in with external services including benefits advice, housing queries with local authorities, completing forms, arranging health appointments, funeral arrangements and working with schools to support siblings and peers of the deceased.

The allocated FSW/Social Worker will provide emotional support to family members and memory-making. Where there are early requests for counselling, complementary therapy, trauma and arts therapy sessions, single-sessions or consultations can be provided. SSCH can offer a children and young people (CYP) therapist trained in trauma care, to support parents/carers thinking through how they will explain to a child or young person that their sibling has died. The CYP therapist will provide best practice and tailored advice for each individual sibling.

Each family is provided with a bereavement pack including:

• Opening letter from a parent.

• Name and contact details of the FSW/social worker.

• Family Support Line as a single point of access for all needs.

• Bereavement Support Opening Letter (see Appendix D) – outlining bereavement care provision from SSCH.

• A selection of information sheets containing guidance about grief including guidance regarding siblings and grandparents.

• When Your Child Dies leaflet (for recent child deaths only).

• A postcard directing families to the Bereaved Family Zone on the website and private Bereaved Parent Facebook Group.

For the CORE bereavement pathway check-ins by the FSW or social worker take place at 3, 6, 12, 18, 24, 30 and 36 months post the anniversary of the death.

The ENHANCED bereavement pathway includes a bespoke bereavement care plan, with more frequent touch points with the family.

The INTENSIVE pathway will include a bespoke bereavement care plan, led by senior psychiatric service leads, alongside external services to meet the needs of the person including Tier 2 and 3 NHS mental health services, social care and substance/alcohol misuse services.

Group interventions are tiered by need:

• All families are invited to wellness events. 

• All families are invited, and several families choose to attend support groups, enabling them to build peer networks of support. This includes a weekly Bereavement Café and groups for specific relations e.g. Grandparents Support Group. 

• A few family members will self-refer or be referred to a therapy group, led by a therapist. This may include Breathe (a trauma stabilisation group), arts therapies, GTEP (group Eye Movement and Desensitisation Reprocessing (EMDR)) and counselling groups. Family members referred for individual therapy may be recommended to attend a group therapy intervention. 

Individual interventions:

Adult family members can self-refer or be recommended a psychological therapies individual intervention. These are provided by a range of counsellors and psychotherapists with specialisms in arts, music, cognitive behavioural therapy (CBT) and EMDR. Adults can also access complementary therapies including massage, aromatherapy and reflexology. The individual may be recommended a series of individual/couples counselling or therapy sessions including modalities such as:

• Holistic counselling

• Trauma focused CBT

• EMDR

• Arts therapies.  

Support for siblings includes:

The Specialist Bereavement Service promotes inclusion and accessibility though providing interpreters and counsellors who can speak with families in their primary language, with delivery of face to face arts therapies and counselling in local community hubs. The Bereavement Pack is available in a range of languages. iPads are provided to families experiencing digital poverty, in order that they can engage in counselling. The service meets NICE and national guidance and best practice. Interventions can be adapted to support people with learning disabilities and neurodivergence. (Bereavement Support - Shooting Star Children’s Hospices) [14]

Families can also choose to participate in events such as remembrance days, to leave a tribute in the remembrance book or to have an engraved tribute on the tree in the memory garden.

The Bereavement Suite at Shooting Star Children’s Hospices can be utilised by families up to seven days after a child’s death. The ‘Willow Suite’s’ include a cold cot and a cold bed and facilities for the family to stay with their child, with access to the memory garden and dedicated reflection space. Wrap-around care is provided to a family, including practical support such as funeral planning. A stay in the willow suite is not always possible if a postmortem is required. However, the family continue to be provided wrap around care and bereavement care.

3.1.3. Data on adult bereavement

The below table shows deaths over time for people of all ages resident in Surrey between 2023 and 2026 from the National Mortality Database broken down by gender and age. The figures do not adjust for population size in each age group. The total number of adult deaths between April 2024 to 2025 for residents aged 18 and over was 21,085 (approximately due to data suppression for ages 18 and 19 years).

Based on the research by University of Cambridge, this approximates to 189,765 people having been bereaved of an adult relationship, including parents, siblings, spouse/partner or carers.

In the UK, 26,970 parents die each year leaving dependent children. In total, 46,300 dependent children are bereaved of a parent each year, equivalent to 890 each week and 127 each day. In the UK it is estimated that one in twenty nine 5- to 16-year-olds have been bereaved of a parent or sibling, which averages one child in every classroom. [15]

Just under a third of Surrey’s households contain at least one dependent child. According to the 2021 census, there were 149,664 households with dependent children in Surrey. [16]

3.1.4. Current state of bereavement services and provision for adults

Provision is provided by both NHS, hospice and charitable services, with charitable and hospice provision taking the larger percentage of bereavement referrals at both Tier 1 and Tier 2, with NHS providing Tier 3 mental health support (not specifically for bereavement).

Cruse is a national charity providing bereavement support for people of all ages, with 80 branches across England, Wales and Northen Ireland. The Surrey branch of the charity offers a helpline, group peer-support sessions and one-to-one bereavement support over the phone, via video call or face-to-face, offering up to six sessions. If after three months post intervention the person needs more help, they can be referred back for one-to-one support.

Cruse offers support for all deaths, including traumatic death, homicide and suicide. For people with moderate to severe mental health needs, including complicated grief or psychosis, the team refer to alternative services for support.

To enable inclusion, the charity has volunteers who speak a range of languages. Self-care materials are available on their website as well as resources for family members. The charity also offers workplace training and consultancy, to build knowledge and awareness within the workplace. The Surrey branch of the charity currently has a waiting list for support (Home - Cruse Bereavement Support) [17]

The Fountain Centre The Fountain Centre is an independent charity based within the Royal Surrey County Hospital (RSCH), providing support to people affected by cancer and their loved ones. RSCH is a regional cancer centre offering care to children, young people and adults with cancer. However, the Fountain Centre provides counselling to adults aged 18 and over who either have a cancer diagnosis or are affected by the cancer diagnosis of a loved one, alongside a specialist service for children and young people whose parent has been diagnosed with cancer. It does not currently provide counselling to children or young people who have cancer themselves.

If a person receiving cancer care at RSCH dies whilst a family member is already receiving counselling, the Fountain Centre will continue to support that family member through their bereavement. However, referrals received after a person has died are not accepted for bereavement counselling; instead, individuals are signposted to specialist bereavement services.

During semi-structured interviews, the team explained that specialist bereavement support is available outside the Fountain Centre and is more appropriately provided by services with specific expertise in this area. They also identified gaps in current provision, particularly for the families of adults who die on hospital wards, as these families are not usually eligible to access hospice bereavement support. This limits the services to which the team can signpost people. The team also identified funding and capacity as significant barriers to expanding the Fountain Centre’s bereavement support provision.

Mindler, We are With You, Mind Matters and Dorking Healthcare provide talking therapies Tier 2 mental health services for people with a GP or who are resident in Surrey offering a variety of interventions including CBT, counselling or EMDR, depending on the service. All services provide interventions for adults (aged 17 and over) of any age with the referral criteria being that the person presents with anxiety or depression. The services do not provide bereavement support, or specialist bereavement support. Services will accept referrals from adults who have been bereaved who have a diagnosis of anxiety or depression which may be related to their bereavement. In semi-structured interviews service representatives discussed not having the skill set or expertise to provide specialist bereavement support. All services and interventions are delivered in line with NICE guidelines and are contracted by the ICB through Any Qualified Provider. Services are commissioned to provide one off courses of therapy for the individual lasting up to 20 weeks, depending on the provider, after which they would refer onto alternative services if mental health support was still required.

Mindler provides one-to-one CBT with a therapist, with appointments seven days a week from 6am to 11pm for people aged 17 and over. People can self-refer into the service and can start therapy straight away. Once accepted into the service, people can receive between six to twelve sessions, with a maximum of fifteen sessions. Mindler offers typed therapy via a mobile phone or computer. Texting is available in English, with access to alternative languages depending on the therapists available. Being a text-based service, the person must have the cognitive ability and level of literacy to engage with the service. In semi-structured interviews, Mindler representatives discussed that bereavement support would not be offered through their service and that aspects of grief and bereavement support would fall outside the scope of their service and may be more appropriate to be undertaken with a bereavement counsellor. Over 50% of people accessing the Mindler service choose to have their sessions outside of standard working hours and will choose evenings or weekends. Anecdotally, the range of hours works well for working parents or carers, who are able to fit in sessions outside of their caring duties. Of those entering treatment 26% are aged 25 to 34, 23% are aged 35 to 44. Of those referred, 18% are aged 18 to 24 years of age, 10% aged 55 to 64 and 4% aged 65 and above.

We are With You provides one-to-one or group support, for people aged 17 and over with appointments available 9am to 5pm Monday to Friday. They do not provide bereavement support. Therapists provide CBT and interpersonal counselling therapy for people with anxiety and depression which may be related to bereavement. Early in the intervention, they discuss that grieving is part of a natural process and explain that the service can support with trauma related to bereavement. Between fifteen to twenty sessions are provided. Assessments are usually over the telephone but can be delivered in person and via video call. The team discussed in semi-structured interviews that the service could be adapted to support complex grief, but that they have found there has not been the demand raised with their service. Provision can be adapted, however CBT requires a level of cognitive understanding to benefit from the intervention. 98% of referrals into the service are self-referrals, with a high proportion of individuals having been informed of the service by their GP. The service conducts outreach to hear from wider organisations regarding the needs of people who may need support.

Dorking Healthcare provides one-to-one or group sessions via telephone, video call or online for people aged 17 and over, Monday to Thursday 8am to 6pm and Fridays 8am to 5pm, with evening appointments also available. The service offers both CBT and counselling for people with anxiety or depression which may be related to bereavement. The service offers a counselling for bereavement course, which is not bereavement therapy, but offers counselling for depression which may be related to bereavement using Person Centred Experiential Counselling for Depression (PCECFD). Individuals requiring low intensity therapy receive four to six sessions, with individuals requiring more intensive support receiving six to eight sessions, or up to a maximum of twelve to fifteen depending on need. On-line programmes are available, with the person directing their own therapy and having a check-in with a therapist if required. If support is required beyond fifteen sessions, the service will refer onto alternative support such as Cruse. During semi-structured interviews, the representative discussed that the bereavement course had been well received, but had not had a lot of uptake. The service is currently reviewing continuation of the course. The service receives fewer referrals from younger adults and older adults. Community based Champions help to support reaching people within communities who are under-represented in their referrals.

Mind Matters SABP NHS Trust provides one-to-one and group support by telephone, video call, on-line or in person, from Monday to Friday 8am to 5.30pm, with evening and Saturday appointments also available. Mind Matters is the largest talking therapies provider in Surrey. The service provides CBT, counselling and EMDR for people with anxiety and depression which may be related to bereavement. Semi-structured interviews with a service representative raised bereavement as a common cause of people being referred to their service with depression. The majority of referrals are by self-referral for people aged 17 and over, with a range of professionals also referring into the service. The largest service intervention offer is CBT, with smaller scale interventions such as EMDR. The service runs a grief and loss counselling course over eight weeks, which is not just related to bereavement; it is also for people who have experienced loss of a relationship or identity. Where the service is supporting someone with a life-limiting health condition, the team link in with specialist services to provide informed treatment. The service refers into existing bereavement charitable services for specialist bereavement support, such as Cruse.

The service has found that for people experiencing loss or change, counselling is more effective in the first instance to manage the change and impact. Interviewees discussed the gap between talking therapies and specialist mental health support, including specialist bereavement support. Interviewees felt specialist bereavement needs are too complex for talking therapies, which is not commissioned to provide support for complicated grief. They highlighted the need for supportive pathways between Tier 2/ Targeted talking therapies anxiety or depression related to bereavement and Tier 3/ Specialist bereavement support.

Princess Alice Hospice offers pre and post death support for children, families and spouses/partners, both in groups and one-to-one. Support is open to children, families and spouses/partners of people who have received palliative and end of life care (PEoLC) from the hospice and people who have been bereaved in Surrey and southwest London who have not been known to the hospice in life. Support is led by counsellors, support workers, volunteers and spiritual/faith workers.

Professional psycho-spiritual support is provided by skilled chaplains/psycho-spiritual care counsellors, either at the Hospice or in the person’s home. People may discuss and explore in confidence any personal and existential concerns associated with end-of-life care and bereavement. A small team of culturally aware specialists, trained in psychotherapy and the religious/spiritual philosophies and traditions, provide informed counsel, religious ceremonies, and signpost as appropriate to other specialists in the field.

The Hospice offers a range of memory-making opportunities and resources to meet individual needs. A Much Loved Tribute Page can be created, allowing family and friends to share photos, videos, and memories in celebration of a loved one's life. These pages can remain active for as long as the family wishes. Light Up a Life memorial services are held annually, providing an opportunity to remember and celebrate those who have died. Families and loved ones can also choose to have an engraved feather placed on the Princess Alice Giving Dove, creating a lasting tribute to remember and honour the life of a loved one.

Specialist bereavement support is provided by a small team of bereavement and spiritual care counsellors, supplemented by trained bereavement volunteers. The team predominantly provides Tier 2 mental health support, with some Tier 3 support where appropriate. Support is available through individual and group sessions and can be accessed both before and after bereavement. Support can be delivered in person at the Hospice, by telephone, or via video call. The Hospice offers private counselling rooms, tranquil gardens, creative activity spaces, and a dedicated reflective space to support bereavement-related activities and interventions. All bereavement services and activities are provided through charitable funding.

The Hospice also works in partnership with Mind Matters Surrey to provide bereavement-specific talking therapies (see section above).

Group bereavement support is available to anyone who has been bereaved, whether or not their loved one was known to the hospice during their life. Participation in group support is generally recommended for up to two years from the date of joining, although individual circumstances and support needs are considered.

The Early Bereavement Café offers support for those who are between 3 to 6 months bereaved, with the Bereavement Café supporting people who are 6 months onwards post bereavement. The Cafés are for people who have lost a loved one known to the hospice in life.

The Grieving an Adult Child Group provides support for parents who have been bereaved of an adult child. Groups are held at the Hospice and offer a safe and supportive environment where parents can share their experiences with others who have experienced a similar loss. The group is open to anyone in the community, regardless of where, when, or how their adult child died.

Princess Alice Hospice offers a range of community Walk & Talk groups for people who have experienced bereavement. The walks last approximately one hour, providing an opportunity to connect with others who are also navigating grief. Walk & Talks offer a supportive and informal environment where participants can share their experiences, if they wish, while enjoying the benefits of being active outdoors. The walks take place across Surrey downs and east Surrey and are open to anyone in the local community who has been bereaved.

The Shed offers practical group support for bereaved people who may not wish to access talking therapies or traditional conversational support groups. Instead, participants can connect with others while working on hands-on projects in a relaxed and supportive environment. Opened in 2016, The Shed provides an opportunity for people to spend time with others who have experienced similar situations, learn new skills, and take part in meaningful activities. There is no expectation to talk about bereavement, and participants are welcome to focus solely on woodworking and practical projects if they prefer. The Shed offers dedicated sessions for women, men, and mixed groups. Participants are usually offered up to sixteen weekly sessions, with the opportunity to extend their attendance where capacity allows.

Watch this video to view The Shed: https://vimeo.com/288348399?fl=pl&fe=sh

Dovetail provides support for children and young people who are living with an adult who has a life-limiting illness, or who have experienced the death of a loved one who was known to the Hospice during their life. It offers a safe and supportive space where children and young people can take part in creative activities and share their experiences with peers facing similar circumstances. Support is available alongside family members and is tailored to different age groups, ensuring that discussions and activities are age-appropriate and meet individual needs. The hospice has dedicated facilities for children and young people, including creative spaces and gardens that provide a welcoming environment for reflection, conversation, and support.

Princess Alice Hospice is currently piloting an outreach service for people experiencing homelessness in southwest London. The service provides a one-stop shop for support, bringing together bereavement support alongside health and wellbeing services. This approach helps individuals access the support they need, including specialist bereavement services. The team hopes to expand this service into Surrey, increasing access to support for people who may otherwise face barriers to engaging with bereavement services. The team has also used the Victoria and Stuart Learning Disability and Autism Bereavement Toolkit to help develop and improve services, ensuring they are accessible and responsive to the needs of people with learning disabilities and autistic people. (End Of Life Care Planning | The Victoria And Stuart Project) [18]

The team spoke of funding being the limiting factor in being able to provide the range of services required to meet need. Bereavement support - Princess Alice Hospice [19]

Phyllis Tuckwell Hospice provides dedicated counselling and bereavement services, which include one‑to‑one counselling, couples counselling, family support, and group programmes. For children, the hospice has specialist support such as the Little Rays programme, led by staff trained to support very young children or families as a whole. Helping them to talk about the illness, plan for the future, and process grief in age-appropriate ways. Families and loved ones can access bereavement services if they have been bereaved of a person who received care from Phyllis Tuckwell in life. All bereavement support is provided using charitable funding.

There is comprehensive emotional and psychological support: one-to-one counselling, couples and family counselling, and bereavement support groups (both formal and informal) provide spaces for adults and families to process grief, anxiety, or stress, both before and after a death.

First Steps: offered to those in the first stages of bereavement. Small group sessions are facilitated by trained counsellors. An initial six sessions are offered.

The Listening Lounge: provides an informal space where bereaved people can receive peer-support. People are welcome at any point post death.

Through bereavement support groups like Little Rays and staff with advanced training in child bereavement, the hospice is able to support children who may be too young for formal counselling or help families engage children in age-appropriate conversations about illness and loss. The service has found that group interventions for young people do not always lead to strong engagement, and one-to-one counselling or family support is often more effective, allowing young people to explore feelings at their own pace and helping families have difficult conversations about illness and loss.

Group sessions and informal forums, such as the monthly Listening Lounge, allow families and carers to connect with others experiencing similar situations, providing reassurance and reducing feelings of isolation.

Phyllis Tuckwell has a chaplain who can provide spiritual support to people of all faiths and people who do not identify with a faith. The chaplain works with people from diverse communities and religions, including the Nepali Gurkha community, to ensure support is culturally inclusive and represents diverse faiths.

Phyllis Tuckwell Hospice provides education sessions for schools, which have been well received. When schools are aware of a child’s situation, they can provide emotional support, stability, and understanding during a very challenging period. However, in the hospices experience, schools do not always proactively reach out to specialist palliative or bereavement services for guidance. Phyllis Tuckwell is working to address this by raising awareness and offering training and bereavement education sessions for school staff, helping professionals feel more confident in supporting children experiencing illness or loss within their families.

The hospice provides remembrance events including Time to Remember which occurs six months after a loved one has died, where bereaved relatives can join virtually for a service of remembrance. Light up a Life is held just before Christmas at Guildford Cathedral where friends and relatives can congregate around a large lit Christmas tree, the lights of which represent the lives of those who have died. The hospice also has a remembrance book in which relatives of friends can request the name of their loved one to be written. The engraved memory tree can be used to create a dedication to the deceased. (Counselling and Bereavement | Phyllis Tuckwell) [20]

St Catherine's Hospice provides one-to-one counselling and groups for patients and families who are under their care, or for family members who have been bereaved of people who were under their care. Bereaved members of the community who have not received care from the hospice are not able to access services. The hospice provides support within the hospice building, with a hub in Oxted to support access. The bereavement services do not provide support in the community within the home. All support is funded through charitable funds.

Support is offered to adults over 18 years of age. The service does not currently offer support to children and young people. The bereavement team comprises of councillors, counselling students and volunteers who provide emotional support. People are offered eight to twelve sessions on a rolling basis. If further support is required, the person can return after a period of six months for a further eight to twelve sessions. The six-month timeframe assists the hospice in managing capacity. People can access bereavement support for up to five years post death, with the team reflecting that most people choose to receive support for a maximum of two to three years. Alongside one-to-one support, the hospice has a range of bereavement groups.

Structured bereavement groups are for people who are three to nine months and six months to three years post death. Groups are supported by the Wellbeing Team, enabling peer-support through sharing experience. Bereavement support drop-in sessions are held within the hospice and are open to everybody and offer peer-support. The parents support group is held monthly for parents who have been bereaved of adult children, with sessions held monthly. STEPS group is a supportive outdoor group for bereaved individuals, offering peer-support and refreshments in local cafés. The team are able to support people who have mild learning disabilities and are cognitively able to participate in talking one-to-one or group therapies.

The spiritual team provide support in the hospice for people of all faiths and people who do not identify with any faith. The team of one practitioner and five volunteers, meets patients in the inpatient unit, providing the link into wider wellbeing services. The team utilise partners in the community to build links into communities who may not be accessing their services but feel that there is more they could do to reach ethnic minority communities in meeting their spiritual needs and providing outreach support. Funding was raised as a limitation in being able to develop this further.

The team undertake spiritual remembrance events which are well attended. They undertake memory-making if requested by the family, although this is not routinely offered. Creative activities have been made available such as arts, poetry and music to support wellbeing. (Bereavement and Remembrance - St Catherine's Hospice) [21]

Woking and Sam Beare Hospice and Wellbeing Care provides specialist bereavement support for adults, children and young people across North West Surrey. Support is available both before and after a death and is delivered by qualified counsellors, trained staff and volunteers as part of the hospice's wider multidisciplinary model of care. Bereavement support is primarily available to families, carers and those important to patients who have received hospice care. The service is funded predominantly through charitable donations, fundraising activities, retail income and gifts in wills.

The hospice offers individual bereavement counselling, family support and group-based interventions designed to help people understand and adapt to grief. Support is delivered in person, by telephone and virtually where appropriate, enabling flexibility and accessibility. Bereavement support forms part of the hospice's wider wellbeing approach, recognising the emotional, psychological, social and spiritual impact of bereavement on individuals and families.

Children and young people can access age-appropriate bereavement support delivered by trained child and adolescent counsellors. Dedicated groups support children and young people at different stages of development, including a juniors group for children aged 9 to 13 and a senior group for young people aged 14 to 19. A group for children under nine years of age is also being developed to increase accessibility for younger children experiencing bereavement. Support aims to help children make sense of their experiences, develop healthy coping strategies and reduce the risk of longer-term emotional difficulties.

The hospice recognises the importance of supporting families before death occurs and promotes early conversations and preparation where appropriate. Bereavement support is integrated with the wider hospice service, enabling continuity for patients, carers and families across inpatient, community and wellbeing services. This approach helps create trusted relationships, supports emotional resilience and enables earlier identification of individuals who may require more intensive support.

Pastoral care is available for patients, families and carers regardless of faith, belief or background. The service provides opportunities for reflection, meaning-making and emotional support during illness, at the end of life and following bereavement. The hospice also offers remembrance activities and opportunities for families to remember and celebrate the lives of those who have died.

Working closely with primary care, community services, hospitals, schools, voluntary sector organisations and other hospices, Woking & Sam Beare Hospice and Wellbeing Care contributes to a coordinated approach to bereavement support across Surrey. The hospice supports a model of care that combines clinical, psychological, social and community-based approaches to bereavement, recognising that grief affects many aspects of a person's life and that support needs may change over time (Bereavement and counselling services – Woking & Sam Beare Hospices).

The Brigitte Trust is a charity offering emotional and practical support from trained volunteers for adults living in Surrey with a terminal illness. The Brigitte Trust supports 200 to 300 people a year.

They also offer stand-alone bereavement support to anyone in Surrey struggling with their grief and bereavement and provide a free eight-week courses bereavement programme led by a grief counsellor. The sessions have a maximum of twelve people and are offered across Surrey providing (Bereavement Support):

• Support with focus

• Encouragement of mutual support

• Sharing of experiences

• Learning new coping strategies

• Development of altered thought patterns.

The Brigitte Trust are currently one of the biggest providers of face-to-face bereavement support in Surrey aside from hospice bereavement care.

Brigitte Trust services are advertised on General Practitioner (GP) surgery screens. Their services receive referrals from GPs, as well as receiving referrals from the social prescribers, hospitals, and other allied organisations as well as taking self-referrals.

Brigitte Trust courses are free, over a duration of eight weeks. They are led by a professional counsellor. They are not therapy sessions but deliver a different structured session each week with handouts to support self-care. Counsellors have reported that social isolation and loneliness can often be a part of bereavement. In addition to giving attendees tools and techniques to manage to their grief. Brigitte Trust has found that over the course of the eight weeks the group forms their own community and then go on to form peer-support groups. These groups meet up for coffee or a walk, independently from the group.

The Surrey Suicide Service is provided by the Lucy Raynor Foundation. The service provide support for families who have been bereaved through suicide of a loved one. The foundation provides advocacy, support with grief, counselling as individuals or as a family and access to resources to enable families to support themselves going forwards. The service will support anyone who has been bereaved by suicide in Surrey, it does not have an age limit and does not hold a waiting list. (Suicide Bereavement Services | The Lucy Rayner Foundation) [22]

Section 8 discusses bereavement by suicide in greater detail.

Social prescribing for adults is available by referral in Surrey Heath and Spelthorne for NHS services. (Social prescribing | Connect to Support Surrey) [23] and provided across Surrey by VCSFE organisations. Social prescribers support navigation and access to emotional wellbeing support across Surrey. Support can be both medical and social in offer, such as talking therapies or accessing an activity such as exercise, or arts, which supports emotional wellbeing. Data was not available to inform if NHS funded social prescribing supports bereavement. VCSFE support is detailed within the JSNA.

Andy’s Man Club has groups in Guildford, Woking, Pirbright, Reigate, Camberley Stanwell, Caterham and Aldershot (Hampshire/ Surrey borders). The charity offers in person peer-support every Monday at 7pm (except bank holidays), to support emotional wellbeing. The groups are not bereavement specific but offer a space to talk and connect. (Find A Support Group – ANDYSMANCLUB) [24]

Mentell, funded by Surrey County Council, provide on-line groups for men aged 18 years upwards. Groups are held every Monday night and every Thursday night, from 7 until 9pm. There are no exclusion criteria apart from being male and 18 years and over. Men are 72% more likely to join if they have been referred to the service, than if they have self-referred. The service does not have a wating list and can support men if they are waiting for NHS mental health services. The services are not bereavement specific. Attendees come with a wide range of emotional wellbeing needs and are supported by two facilitators at each session. There is no obligation for the attendees to speak, and the groups offer peer-to-peer support and connection. The groups are not designed to provide support for mental health crisis. If an attendee discusses suicidal ideation, the facilitator will support the attendee one-to-one after the session to escalate to support services, supported by their Mentell membership manager. (Mentell – Men, is it time to talk?) [25]

Dad Matters, is delivered by Home Start Surrey and offers support to fathers during pregnancy and in the first two years of parenthood to improve paternal wellbeing and strengthen relationships. The service provides one-to-one and community-based groups to increase awareness of support and services and improve wellbeing. Dad Matters do not provide bereavement support, where a dad has experienced loss or bereavement of their baby or infant. The Dad Matters team will link into existing services. (Dad Matters | Home-Start Surrey) [26]

Veterans have access to VCFSE such as the Royal British Legion and Gurkha Welfare Advice Centre regarding bereavement support and the wider veteran community. Serving Armed Forces have welfare committees which are run by each regiment as well as access to the Forces Connect Tool to search for support. VCFSE organisations for veterans can help support funeral costs and representation from the persons unit. Family, spouse/partners of veterans would access bereavement and mental health support available through the NHS, Local Authority and VCFSE.

Marie Curie provide local and national support and care. Locally, Marie Curie provided a Care Home Companion Service in East Surrey (see appendix 5). In May 2025 as part of the Surrey companion service, Marie Curie ran an older persons’ Ukrainian focus group in Caterham in Surrey. The Marie Curie team worked in partnership with Tandridge Council, Reigate and Banstead Council and Central Surrey Voluntary Action.

The Marie Curie Team held an information session and exploratory focus group about the needs and preferences of the local Ukrainian community, around end-of-life care and health and financial support information access. 13 Ukrainians who currently live in Surrey attended - most had very little or no English language, with all of them arriving in the UK after 2022. Ages ranged from 55 to 80. The session was used to guide and inform the translation literature Marie Curie are able to provide.

The booklets that were produced are here:

Допомога з оплатою енергії | Help with energy bills [27]

Marie Curie offers a national bereavement peer-support service, with six sessions of weekly support of up to 45 minutes each. The sessions are for those who have been bereaved of a terminal illness. Marie Curie has an online community, giving a space for people to share thoughts and feeling. The online community is moderated by the Marie Curie Support Line team, who also support with questions.

All of the national resources and support are available here:

Information and support | Marie Curie [28]

SeCamb and its ambulance services signpost families to all charities, following a death.

Bronzefield, Send and Downview women’s prisons in Surrey have access to a Perinatal Mental Health team following loss or death of a baby, infant or child. The prisons provide Sands boxes to support with loss and facilitate memory-making. (Order memory boxes | Sands) [29]

All prisons in Surrey have mental health in-reach teams with mental health psychiatrists and mental health practitioners. If prisoners experience bereavement of another prisoner while in prison, the mental health support team will offer bereavement support for the prisoners around the deceased. Additional support can be provided for prisoners if their mental health declines following a bereavement. For families of a deceased prisoner, the prison will communicate with the family and the family liaison officer will support with bereavement. The prisons have a chapel to support with bereavement and spiritual support. Memorials are sometimes held for prisoners who have died or passed to support prisoners around them.

4. All age health inequalities in bereavement 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.

4.1. Age and gender

Data
According to 2021 census data there were 616,069 females and 587,041 male residents in Surrey. Ages 20 to 64 represents the greatest population percentage for both males and females, followed by 0 to 19 years and then 65 years and over. (Population Estimates | Surrey-i) [118]Females account for 50.84% of deaths across all ages, with Surrey Downs Place having the highest number of deaths between 2023 and 2025 (see End of Life Care JSNA for further details).

National data estimates just over 1% of children in England and Wales experience the death of their birth mother before they are 16 years old. With paternal death numbers for children aged under 16 being twice as high as those who are bereaved of a mother (UK Death Statistics | Child Bereavement UK).

Impact
Grief triggers neurobiological changes which have a profound effect on the brain, and shape how individuals cope with death and grief. Genetics, hormones, environmental factors, gender and age affect brain development, cognitive ability and behaviour. [30] Following grief, areas of the brain associated with emotional regulation and memory processing undertake adaptation. Stress hormones, such as cortisol elevate the heart rate and can impact overall health. The attachment bonds to relationships can lead to epigenetic changes, resulting in difficulties for the brain in accepting the loss. Hormone changes, such as the releasing of oxytocin can persist, reinforcing the pain of grief. [31]

Research suggests variation in how grief develops across time, with gender being a factor in variability of grief response. Females have a higher risk for intense and complicated grief, or prolonged grief in response to traumatic loss. [32] However, similarities were also found in both genders having episodes of grief, that develop into acceptance and feelings of bitterness that develop into numbness and meaninglessness. The feeling of initial shock differed, with females experiencing increased shock and greater overall strength as grief developed. [33]

For bereaved women and birthing people, perinatal loss poses a significant risk to mental health. Research has found long-term impact, with increased risk of anxiety and depression and between 25% to 39% developing Post Traumatic Stress Disorder (PTSD), all of which can develop alongside the natural process of grief. [34] The type of loss (pre, peri or post-natal) did not have an impact on severity, although lower gestational age was associated with increased symptoms. [35] Perinatal infant death has been highlighted as a causal factor for maternal suicide, with maternal suicide identified as one of the leading causes of death within the first year after birth. [36]

Age is a factor in grief response, differences occur across the life span, and bereavement needs vary based on age. Grief affects emotional wellbeing. It is not an illness, but it does increase the risk of mental health difficulties in childhood and later life.

It is recognised that young children, including babies, experience grief. Children and young people can experience anticipatory grief prior to end-of-life and transitional needs related to wherever end-of-life occurs. Grief in infants, children and young people may not present as verbal expressions of grief, but instead as physical pain, behavioural changes such as school refusal or irritability. Young children may feel accountable in some way for the death, due to their lack of understanding. Grieving in childhood does not following an easily identifiable pattern. Grief may need to be re-processed as the child’s cognitive abilities progress and understanding of the finality of death and loss are understood. Witnessing a traumatic event may further intensify symptoms. [37] [38]

The impact of bereavement and loss can be far reaching. Beyond the immediate emotional response, bereavement in childhood or adolescence has been linked to increased anxiety, depression and post-traumatic stress disorder (PTSD), particularly after a violent of sudden death. [39]

Children and young people who have been bereaved of a parent have reported significantly lower self-esteem than their peers and feel less able to affect change, two years post death. A third of bereaved children reached clinical levels of emotional and behavioural difficulties in the two years following death of their parent. Teenagers who have experienced bereavement of a family member at any age have lower emotional wellbeing at age 13 compared to those who have not experience bereavement of a family member. Family bereavement has a long-term continuous and cumulative effect on children’s emotional and social-wellbeing. [113]

Adverse Childhood Experiences (ACE’s) including bereavement and particularly traumatic bereavement as a result of sudden and unexpected death or traumatic death such as homicide or suicide, can significantly impact longer term health outcomes. The Surrey Child Death Review Partnership Thematic Review into Deaths by Probable Suicide highlighted evidence linking Adverse Childhood Experiences (ACEs) to poorer mental health outcomes and an increased risk of suicide. Research cited within the review suggests that a substantial proportion of adult mental health conditions may be attributable to ACEs. [40]

Adults who have been bereaved of a loved one can experience depression and anxiety. Those at greatest risk are those who were in contact with the deceased every day or not at all in the year prior to death, those who have experienced sudden unnatural death and those who have lost a partner/spouse or child. [41]

Some people can develop psychological responses to grief. Up to 50% of adults have depression following the first few months after the death of a spouse. [42] 10 to 20% of individuals experience complicated grief. Complicated grief is a persistent form of intense grief characterised by intrusive thoughts, a chronic sense of emptiness, difficulty accepting the death and preoccupation with thoughts of the deceased. [43]

For parents who have lost a child, the associated trauma can affect parental, sibling and family mental health, which can trigger PTSD and acute anxiety and depression. Parents who have experienced sudden or traumatic death of their child, are at greater risk of severe psychological distress, including suicidal ideation, particularly in early bereavement. [44]

People with prolonged grief disorder are at greater risk of cardiovascular disease, acute myocardial infarction (AMI), heart failure, mortality, stroke, atrial fibrillation and psychological disorders such as depression. Prolonged grief can cause continued high stress hormones, which can affect coronary and heart muscle function. Intense grief may cause AMI in people with an increased risk of chronic vascular disease. Physical health can be more widely impacted, resulting in worsening of long-term conditions such as diabetes, impact on immune function and insomnia. [45]

A systematic review found that adults with complicated grief, or substance misuse, were more vulnerable to development of the other condition. Risk factors for adults developing complicated grief and substance misuse were female gender, deprivation, loss of a spouse, loss of a sibling and traumatic death. Complicated grief was also associated with alcohol misuse for adults diagnosed with bipolar disorder and major depressive disorder. [46]

Older adults, while having experienced greater loss in their lifetime, reported the least utilisation of grief services. Older people experienced wider socio-economic impacts of bereavement, including losing social networks, the loss of a shared past and difficulty finding meaning following the death of a long-term partner. Experiences of bereavement are shown in the figure below. [47]

Research has found that when caring comes to an end, former carers experience feelings of uncertainty, loneliness and loss of identify, with 33% reporting their physical health had worsened and 35% reporting their mental health had worsened since they had stopped caring. People reported feeling felt it would be challenging to rebuild friendships. Some former carers struggle financially after their caring role has ended, with 35% reporting their financial situation had worsened. [48]

4.2. Deprivation

Data

From April 2023 to March 2025 Woking, Epsom and Ewell, Runnymede and Spelthorne had higher proportions of deaths among residents living in deprived areas than Surrey overall (3.8%), Spelthorne was notably higher at 14.1%, with deprived areas being defined as those in the most deprived 30% nationally. These most deprived areas in Surrey form the Key Neighbourhoods in Surrey, highlighted as priority neighbourhoods within the Health and Wellbeing Strategy. [49]

Surrey has an increased incidence in the most deprived areas of sudden and unexpected neonatal, infant and child deaths. [50] A recent review reported 53% of infant sudden deaths were known to have experienced one of more elements of deprivation.

The Surrey Child Death Review Partnership Neurodisability and Infant and Child Deaths in Surrey: A Thematic Review of Deaths that Occurred Between 2016 to 2020 [51] 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 were more likely to be living within the lowest third in terms of income deprivation in Surrey.

Impact

Research has highlighted unequal social status in bereavement related to gender, ethnicity, class, sexuality and age, with structural inequity experienced in interactions with social networks and services. Social and structural inequities, such as poor housing, deprivation and employment issues, can impact individual agency and result in withdrawal from services and social networks. [52] Social disconnection can worsen psychological health following loss. [53]

Insights from semi-structured interviews with practitioners in Surrey highlighted the impact of structural vulnerability on grief, such as loss of housing, transport and income, causing increased anxiety following death.

4.3. Ethnicity

Data

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. [117] The ethnic minority population in Surrey is growing, with Surrey Minority Ethnic Forum reporting 23.4% of Surrey residents being from ethnic minorities. [54]

Although the proportion of child deaths 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. The proportion of deaths are high when considering the population size for Surrey residents from these ethnic groups. This may indicate an inequity of bereavement for people from ethnic minority groups.

Impact

Research by the University of Bristol has highlighted bias in end-of-life care, including rigid practices and assumptions within healthcare settings, predicated on a white British understanding of family. These assumptions resulting in poor quality end of life care and support for black families, impacting bereavement and grief. Racism experienced in health and social care compounded grief and results in increased distress and mistrust at a time of acute vulnerability. Black people with lived experience of being bereaved, described unresolved, cumulative trauma across generations, which were worsened by social taboos and limited culturally safe spaces to discuss bereavement, death and grief. [55]

Surrey Minority Ethnic Forum (SMEF) Speaking for Ourselves research supported the above findings from the University of Bristol. Their research included accounts of people feeling dismissed, not listened to, or not checked for understanding. It also highlighted experiences of discrimination or dismissal among black British, Muslim and neurodivergent participants, and women from south Asian backgrounds reported that they were not always taken seriously. [56] Participants in a focus group of people from ethnic minority communities with lived experience of bereavement, resident in Surrey, also discussed a lack of trust in services and subsequent offers of bereavement counselling, due to their poor experiences of hospital care and poor quality of death in the hospital. One mother spoke of receiving anniversary cards of their baby’s death from the hospital where they had a poor experience, which they found very hard emotionally. The impact of racism on experiences of care and grief was also discussed, including professionals inferring the death of a loved one to genetic reasons caused by consanguinity, where spouses were not close biological relations.

SMEF’s Speaking for Ourselves research found that participants understood health and wellbeing holistically. People spoke about physical, mental, emotional, spiritual, cultural and social wellbeing together, not as separate issues. [56] Discussing death is taboo across many cultures, particularly child death. With south Asian, southeast Asian and African cultures avoiding discussing death publicly due to social taboos. South, east and southeast Asian mourning rituals are both expressions of grief and culturally embedded moral duties. Asian cultures limit behavioural expression of grief in social situations where emotional moderation is expected. Bereaved individuals who perceived that their cultural or social networks would not tolerate the expression of emotions were found to experience higher levels of psychological distress. Japanese bereaved individuals did not display grief in public and frowned upon crying, as crying is believed to prevent the spirit of the deceased from going into another world. Korean culture does not permit discussion of death; it is considered disrespectful of elders for a child to discuss the death of their parents. Collective mourning rituals and ceremonies provided social and psychological support due to intensive familial involvement. Rituals in the Chinese culture bond the family to their wider social circle, as it is encouraged to provide support within the community. [57]

A paper exploring the cultural traditions of Gypsy, Roma and Traveller (GRT) communities, discusses rituals around burial and mourning as being important following death of a member of the communities. For Romany Gypsies, on the day of burial, the body of the deceased will pass landmarks that meant something to the person in life, on their way to the cemetery stopping to allow connection with those places before arriving at their final resting place. For Irish Travellers, the deceased is taken to their favourite places in life, which may include their home or pub, before being buried. Possessions such as clothes, bedding or a trailer, if the person passed away in it, are traditionally burnt. Members of the community are usually buried with large headstones with the size and shape reflecting the regard for the deceased [114](Gypsy Traveller, 2017). Research discusses that the burial site for members of Gypsy and Traveller communities can become contested by religious authorities, due to differing aesthetic values, resulting in members of the communities feeling unwelcome. [58]

The importance of culture and mourning rituals in grief and bereavement support was highlighted within semi-structured interviews and focus groups with people with lived experience from ethnic minority communities in Surrey. South Asian and African community representatives spoke of the cultural social taboos of discussing death. Nepali Gurkha veterans in Surrey discussed the importance of care and support from family and the wider community and the importance of repatriation to Nepal for burial of the deceased to follow cultural and religious rituals. They also discussed the financial difficulties for the family in enabling this to happen and concerns regarding impact on settlement in the UK for wider family members. During focus groups, people spoke of cultural practices and views that in some instances had a detrimental impact on their grief. For example, particularly where people felt they were unable to talk about the deceased or keep personal items due to cultural practice and views that this may have adverse implications for the wider family.

4.4. Learning disability, autism and neurodivergence, physical disability and sensory loss

Data

The Surrey Learning from Lives and Deaths (LeDeR) Annual Report 2021 showed life expectancy inequity for women with learning disabilities, dying 22 years earlier than the general population. [59] Between 1st April 2023 and 31st March 2025, there was a total of 13 deaths of children with a learning disability, aged between 4 and 17 years old. This accounts for 12.5% of all child deaths.

The Surrey Multiple Disadvantage JSNA [60] highlighted suicide as being a leading cause of early mortality amongst autistic people, related to trauma and mental health needs.

In Surrey, 13.5% of the population reported having a disability, with severe hearing loss and physical disability being the most prevalent conditions. [61]

Impact

Research discusses that children and young people with learning disabilities and autistic children and young people experience a broad range of grief reactions, which can impact activities of daily living. Emotional and behavioural grief reactions can include crying, hitting, overstimulation or losing interest in preferred activities, with new behaviours arising such as aggression, repetitive behaviour or sleep difficulties. These can be misinterpreted as being caused by the person’s learning disabilities or autism and not attributed to grief. Identification of need and appropriate evidence-based support is required to prevent the risk of developing mental health issues. [62]

For adults with a learning disability or autistic adults, grief may present as anger, overstimulation, sleeping difficulties, eating differently and may not present as grief or sadness. Autistic people have discussed finding it hard to understand their emotions, having increased behavioural reactions and having a delayed or extreme emotional response. [63]

Carers of autistic people with lived experience of bereavement in Surrey expressed a lack of understanding of death and the finality of death and that as carers they did not feel they had the language or tools to support discussions around death and grief. Marie Curie have recognised this need and developed accessible resources to support discussions about death and grief. [64]

Communication on being bereaved has been raised by research as a key theme for people who are Deaf, deaf or hard of hearing. Bereaved family members who are Deaf, deaf or hard of hearing discussed lack of interpreting. This impacts people who lip read and use sign supported English but has a greater impact on people with British Sign Language (BSL) as a first language, as they would not necessarily have a good comprehension of English. Some hearing family members had a poor experience of their loved one’s death as they were present as both a family member and interpreter. Some reported that children were used as interpreters where the spouse/partner of the dying or deceased. Poor experiences of the communication of the death of a loved one to Deaf, deaf people was raised. One person reported having to use hearing neighbours to inform their GP that her husband had died. [65]

People with physical disabilities, sight loss and dual sensory loss may also experience inequalities related to bereavement. Having made initial requests through local charitable partners, research and local insights need to be continued to be sought to fully represent needs.

4.5. People experiencing multiple disadvantage

Data

The Surrey Multiple Disadvantage JSNA JSNA Multiple Disadvantage | Surrey-i provides an evidence base of people experiencing multiple disadvantage within Surrey.

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

Impact

For People with experience of the criminal justice system, bereavement can result in the onset of criminal and/or risk taking behaviour and can disrupt desistance from crime. [66] Risk factors for adults developing complicated grief and substance misuse include experience of the criminal justice system.  [67]  Health and social care needs analysis of all prisons can be found at Surrey i. [68]

People experiencing alcohol and/or substance misuse had higher prevalence of complicated grief beyond other risk factors including relationship to the deceased, gender and circumstances of the death. [67]

People experiencing homelessness are more likely to have their grief unrecognised and have inadequate support for the bereavement. The death of a loved one, particularly a partner/spouse or sibling, is a primary risk factor in contributing to a person experiencing homelessness. Research has found that bereavement was a key transition moment that people described as the turning point into homelessness. [69] These views are reflected by people accessing Princess Alice Hospice who are experiencing homelessness with lived experience of bereavement, where the bereavement was a turning point in their lives that led to their becoming homeless. Causal factors described include loss of the family home, mental health issues related to bereavement, loss of employment and loss off income following mental health issues and/or substance misuse related to bereavement. Research has also highlighted these causal factors and additionally anticipatory grief, where the person is temporarily housed and at risk of becoming homeless following death. [69]

The high frequency of death experienced prior to and during experiences of homelessness, with many being sudden and unexpected deaths, can lead to individuals becoming desensitised to death.

Children and young people in the care system and people with experience of the care system have been described in research as having ambiguous loss when separated from their birth families. This refers to loss, which is unclear, unverified and does not have resolution. Children within foster homes have been found more likely to lose a parent to suicide or substance related deaths, which is associated with higher risk for complex bereavement than natural deaths. The socio-economic factors, discussed in the deprivation chapter, can also add to risk of complicated grief. There is scarcity of research in this area to inform practice for social workers supporting children facing multiple vulnerabilities in addition to their bereavement. [70]

4.6. Sexual orientation

Data

In Surrey 90.66% people aged 16 and older 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. [71]

Impact

Research suggests poorer bereavement outcomes for lesbian, gay and bisexual people. Same gender partners are more likely to report more psychological distress and experience complicated grief, compared to different gender partners following infant or child bereavement. [72]

Studies indicate that people who are lesbian, gay, bisexual, trans, queer LGBTQ+ can experience disenfranchised grief, which is the effect on people who feel denied the right to socially legitimate grief, including where the relationship with the deceased was deemed not to be culturally traditional, or had to be kept a secret. The additional stigma of suicide, compounds disenfranchised grief and increases likelihood of complicated grief, with people with lived experience reporting being excluded from shared mourning. Intersectionality of LGBTQ+ identity with other protected characteristics and Inclusion Health groups further compounds impact and inequalities. [73]

4.7. Religion

Data

The Christian population is the largest religious group in Surrey, although this had 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. [74]

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. [75]

Impact

Public Health England and Child Bereavement UK discuss the bereavement practices across the diverse religions and cultures within the UK, to inform practice for practitioners, professionals, providers and commissioners. [76]

Semi-structured interviews and focus groups with people of Christian, Muslim, Hindu and Jewish faiths and spiritual people who do not identify with a specific faith, discussed religion, faith and spirituality as being a support when bereaved. People of Muslim, Hindu and Christian faiths of south Asian, African and white other (Eastern European) ethnicity spoke of their experience of being bereaved, with the majority of participants raising faith as being an important part of grieving and in finding support. This is discussed further in section 4.3 in hearing from people with lived experience.

4.9 Veterans

Data

The Armed Forces JSNA details the needs of our armed forces and veterans within Surrey. [77]

Impact

Studies discuss that bereavement among veterans is complex, having experienced death in both military and civilian contexts and in ways that may impact their mental health. Death of comrades in combat can result in traumatic grief. Relational bonds between serving Armed Forces are strong and at times forged under life threatening conditions, resulting in bereavement of a comrade feeling akin to the loss of a family member for some. When serving, grief can be sudden, violent and traumatic, while having to continue duties, resulting in people not having time to process their loss. Psychological impacts include complicated grief, depression, anxiety, sleep disturbances and suicidal ideation. With some veterans using substances as a coping mechanism. [78]

The military culture is to suppress emotions and to maintain resilience, with many veterans not seeking support for grief. For some this may be due to guilt and shame that their grief is not valid unless resulting from combat. [78]

Veterans can face intersectionality of multiple disadvantage, with mental health issues being a causal factor. Research discusses the link between PTSD and anti-social behaviour in the veteran population. With anti-social behaviour leading to experience of the criminal justice system. [79] In the UK. veterans make up around 3.6% of the prison population. [80] [81]

Between 5 to 7% of the UK homeless population served in the Armed Forces. Veterans have a higher risk of suicide and suicidal ideation and UK veterans under the age of 24 years are three times more likely to complete suicide than a non-veteran. [81]

This reflects discussions with veterans in Surrey, during semi-structured interviews, with many sharing that they have a culture of self-reliance and unwillingness to seek support for their emotional wellbeing. Veterans in Surrey discussed that many veterans have experience of the criminal justice system.

4.10 Social needs

Public Health self-assessment of Compassionate Communities demonstrates that further development is required to create a compassionate Surrey. The Sheffield Compassionate City approach demonstrated 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 bereavement support and prevent poor mental and physical health outcomes, in collaboration with residents, health, local authority, hospices and VCSFE. [82]

Data

Data from the Citizens Advice Bureau (CAB) southwest Surrey shows social needs related bereavement raised by residents. From 2025 to 2026, 141 clients in total raised 182 ‘issues’ with the Citizens Advice Bureau related to bereavement, with execution of wills was the highest concern, followed by making a will and registering a death.

Impact

Social value is recorded by the CAB, through their activities which have empowered clients to act. A total value of £98.4k was achieved, with the highest total of £67k achieved by the CAB team in empowering people who have been bereaved, with £28k achieved where CAB have undertaken action on a client’s behalf.

The CAB model and data indicate the social value in providing practical information and support for bereaved people.

5 Key themes in bereavement support

5.1 Overview

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

Bereavement is not a discrete moment, but an ongoing process shaped by individual, relational, cultural, and system-level factors. The analysis demonstrates that experiences of bereavement support are not determined solely by the availability of services, but by how well those services are coordinated, accessible, and responsive to need.

The themes presented below reflect both the frequency of issues raised and their impact on experience, with particular emphasis on areas where system design constrains equitable bereavement support.

5.2 Table of themes

5.3 Description of themes

1. Equity, inclusion, and access to bereavement support are shaped by system design and delivery.

Equity and access emerged as a dominant theme across the data, with consistent evidence that disparities in bereavement support reflect limitations in system design rather than deliberate exclusion. While a wide range of services exists across statutory, voluntary, and community sectors, the variability in design, acceptance criteria, awareness, and capacity results in uneven access.

Equitable bereavement care requires flexible, culturally responsive approaches tailored to individual needs. Experiences of grief vary significantly across individuals, families and communities, shaped by cultural, religious, economic, environmental and social contexts. Many services demonstrate an intention to provide tailored support, recognising that bereavement responses are highly individual. For example, provision is described as “very family led. No bereavement package looks the same. Some people need more, some just need a check in” (003 004), reflecting efforts to adapt to differing needs. Similarly, services emphasise inclusive and informal approaches that allow people to engage in ways that feel appropriate to them, including group opportunities to very informally and safely spend time together and know that everyone is in the same position (003 004) and a “range of delivery methods which suit clients… in person…  via video conferencing… telephone” (011 012), enabling accessibility. 

However, these flexible approaches are not consistently embedded across the system, and some groups remain underserved due to cultural barriers, communication needs, or systemic design limitations. For example, gaps in reach were identified in relation to underserved groups, with acknowledgement that some services are not reaching ethnic minority communities as well as they could (030 031 032 033). In addition, some structural exclusions emerge through service eligibility and design, including limitations for individuals with moderate learning disabilities, or substance use (030 031 032 033), which can restrict access despite need. Another example discussed by participants was language barriers, “if English isn't a first language, we find that is particularly difficult for us because the cost of interpreters is enormous” (027).

Equity of access to bereavement support is influenced by service availability, but also awareness, and visibility. Differences between service availability, access, and uptake highlight opportunities to strengthen engagement. Across the responses, there is a consensus that bereavement care plays a critical role in supporting individuals through grief and reducing the risk of mental health difficulties, “if you don’t support people with bereavement needs, the risk of that further down the line… and the impact on them… [could lead] into potential mental health services” (035).  Evidence of this is seen within services who are “raising awareness of [the need for] bereavement services and support... because a lot of the time the alcohol use... it goes back years to bereavement that... hasn't ever really been resolved or provided with support” (018).

However, despite an identified need, access to bereavement support is not solely determined by the presence of services. Fragmentation and lack of visibility significantly influence how support is accessed and experienced. While individual services demonstrate strong practice and commitment, the absence of coherent coordination across organisations results in variability in access and continuity of care. Professionals described significant challenges in raising awareness on what support exists, when it is appropriate, and how to access it, with one participant noting, “I’m not particularly sure… where I would direct them or signpost them… nothings springing to mind” (021). Others identified hospices as a default option, but highlighted limitations in awareness beyond this “we would signpost to the hospice. I'm not aware of any others, but that doesn't mean they're not [there]” (005 006). This lack of visibility extends across the wider system. Even where specialist services exist, their reach is variable, “we would love it if everyone across Surrey knew about us and if a family needed us, they were signposted to us… It’s working well in some areas and not in others” (027). 

Similar gaps in awareness exist across wider community and education settings, where organisations working closely with families acknowledge that they “don’t think they’re very aware of what support is available” (010). This includes “schools and community services [as they] can play an important role in supporting children affected by serious illness or bereavement… they can provide emotional support, stability, and understanding during a very challenging period however, schools do not always proactively reach out to specialist palliative or bereavement services for guidance” (019). In response, there have been efforts focused on strengthening understanding within schools, including “raising awareness and offering training and bereavement education sessions for school staff, helping professionals feel more confident in supporting children experiencing illness or loss within their families” (019). Despite these efforts, knowledge gaps persist, meaning that access is often shaped by individual awareness and proactivity rather than need. 

Alongside awareness, system capacity and funding structures also influence access. Bereavement services were described as operating within constrained resources, which limits their ability to meet demand. In hospice settings in particular, bereavement provision is not fully integrated into core funding models, “NHS funding… wouldn’t cover bereavement because that’s considered… an added extra” (035). Furthermore, bereavement services often fall into the voluntary and charity sector where sustained funding is a challenge, “we need more resource… without a doubt… we don’t have any statutory funding at all… it’s hard out there for charities” (027). As a result, demand can exceed capacity. Services describe the need to prioritise support, especially for more complex cases, with recognition that “for the ones that are more complex and maybe need a higher level of support is where we struggle a bit because of our resource” (027). This creates reliance on time‑limited interventions or thresholds for entry, and in some cases contributes to long waiting lists, “the wait is so long…it’s too long to wait” (026). However, the interview data also highlight that availability and demand do not always clearly align. In some areas provision is available but underutilised, with professionals noting that interventions can be tailored, “if there was the need for a course supporting people around complex bereavement…then we could look at adapting our course materials... [but] our challenge is that often there's not the demand” (011 012), suggesting that availability alone does not equate to accessibility or engagement. This suggests a misalignment between system design and how people engage with support.

Provision also varies depending on where families are situated within the system. Some hospice services offer comprehensive and structured support, including “a much more robust bereavement follow-up... because they have… counsellors… [and] a whole kind of psychology team” (014), “alongside emotional and psychological support: one-to-one counselling, couples and family counselling, and bereavement support groups (both formal and informal) and provide spaces for adults and families to process grief, anxiety, or stress, both before and after a death” (019). In contrast, other services are more limited in what bereavement support they have been able to access. One participant explained, “in the local area…it’s just really inconsistent and all very reliant on volunteers and the goodwill of people in the community” (014). Access is further shaped by eligibility criteria and service boundaries. In some cases, bereavement support is linked to prior involvement with services, meaning that “if you're lucky...to die in a hospice, then there is much more available than if you don't” (014). Similarly, “we don’t contact people that died without any palliative care input, so any sudden deaths or… unexpected deaths… we don’t really cover” (014), highlighting how access can depend on prior engagement with specialist services rather than individual need.

Eligibility restrictions, the type and circumstances of death also significantly influence access to support. For those experiencing a more complex bereavement, such as when a child dies by suicide or homicide, “that sort of long-term bereavement support for some of those families where death is complex… it's really important and yet that's a big gap in provision for Surrey” (015 016 017). At the same time, there is variability in how long post death support is offered, with some services providing extended and flexible care, including paediatric support that has no cut off time to the length of time of support. No entry time either… support families already know, sudden and unexpected deaths, suicide and in some cases homicide (003 004), while others provide support for defined periods, for example offering support for up to five years after the death (030 031 032 033). Such specific criteria impact on equality of access. 

Overall, access to bereavement support is shaped by the interaction between availability, awareness, visibility, and system design. While there are clear examples of high-quality and responsive provision, variability in awareness, resourcing, eligibility, and coordination results in uneven access. This highlights opportunities to strengthen system coherence, improve visibility and signposting, and ensure that bereavement support is accessible and based on need rather than navigation, capacity or prior service involvement.

Complexity of pathways can influence how easily individuals and families access appropriate support. While bereavement services are widely distributed across the system, fragmentation and variability in how these are organised can affect both access and continuity of care. Although individual services often demonstrate high-quality practice, the absence of coherent and clearly defined pathways creates variability in how support is accessed and experienced. 

System navigation itself presents additional barriers. Referral processes, eligibility criteria, and administrative demands can be difficult to manage during periods of grief. For some, the effort required to engage with services becomes prohibitive, particularly when combined with practical constraints such as geography or transport. For example, families may struggle to access support where “if people don’t live really near and they don’t have their own car, it’s then really difficult for parents to have the motivation to get those siblings there… because it takes a massive amount of effort. And actually, if you're grieving, you don't want to make that amount of effort” (015 016 017). Similarly, complex processes that require detailed engagement can deter individuals who are overwhelmed, with some reporting that complex and detailed sign‑up procedures are “off‑putting… [when people] haven’t got the bandwidth” (021).

Access is also shaped by how pathways are structured. Although services maintain relationships across settings, this does not translate into a clear, navigable pathway.  Instead, bereavement support often relies on individuals navigating the system to identify appropriate services. Families are often expected to find support themselves, the families will reach out independently, they will have looked them up (003 004), with one professional stating, “if a young person had a grief reaction and wanted to access counselling, they can self-refer… to the more specialists teams" (037). While this model offers flexibility, this reliance on self-identification and proactive help-seeking places a significant burden on bereaved families and reflects a wider system in which responsibility for access is implicitly transferred to the individual during a time when this may be particularly difficult. 

The complexity of navigating available services is further reflected in the broader systemic challenges, where “in Surrey… it is confusing in terms of how to get help, where to get help, why would I go to this person over this person… [and] knowledge about where to get help quickest is limited. People don't have that information. GPs  don't have that, professionals don’t have that information. It's hard to keep that information up to date... The system is a bit complicated and a bit confusing... models of delivery were developed so that people have more choice... When you're having a really difficult time, choice can be really difficult and confusing” (011 012). This demonstrates that complexity associated with choice-based models is not only a user-side issue but is embedded across the system, where multiple services and access routes, while intended to increase choice, can make navigation more difficult in practice. 

There are also clear examples of timely and proactive response, which represent strong practice and pathways within the system. For instance, one team described how they “provide immediate support when there's an unexpected death, support to the family and support to other professionals… and we then also provide that immediate bereavement support before other services have had a chance to step in and provide… longer-term supports... our on call system works really well…  every day of the year… we will go straight away... help relieve the pressure from the nurses… by doing the memory-making… and just being with the parents... it frees up any staff who tend to find that... really upsetting” (015 016 017). This highlights the value of rapid, embedded support at the point of need. These approaches reduce delays, provide continuity, and alleviate pressure on families during acute distress.

Stakeholders also highlighted the importance of stronger coordination and alignment across providers to improve fragmentation and reduce complexity. They emphasise the need to work “more… cohesively together” and to ensure that services are “front of mind… [so practitioners] can refer in to us” (021). As well as the need for system-level approaches that are needed, for instance, “there’s got to be ways of joining that up and make it easy for people to know where they go for what support rather than multiple providers doing multiple things in different ways.” (035). Lack of coordinated services can mean early engagement is not always achieved, with one participant noting that “had they been referred to us earlier, they could have had more support or their carers could have had more support… particularly around pre‑bereavement, not just waiting for the event” (035). This suggests that coordination, pathway clarity and early identification are important for enabling timely support. However, there is some evidence of strong, coordinated care, such as regular multidisciplinary meetings which include “bereavement… and ongoing psychological, social support for the parents, the child, the siblings and the family. Schools will attend that meeting as well” (024). This illustrates how integrated, multi-agency approaches can simplify pathways, improve coordination across services and strengthen continuity of support.

Finally, lack of standardised pathways can also affect who is recognised as needing support. Participants highlighted that bereavement may extend beyond immediate family networks, noting that “there must also be something about residents losing their fellow residents and probably friends over years… it’s just accepted that people will die [in care homes] and nobody gets support” (035). This is also seen in families who are bereaved of a child where evidence of the ripple effect onto grandparents has also been identified (003 004). This suggests that clearer and more inclusive pathways could help ensure wider groups affected by bereavement are recognised and appropriately supported. Good practice can be found within some prison services which are described as having a mental health in-reach service that provides bereavement support for prisoners… also the chaplaincy service are available to offer support in this area (001 002). 

Overall, while bereavement support is available across a range of services, complexity in pathways and system navigation influences how easily individuals are able to access appropriate care. Strengthening coordination, simplifying pathways, supporting earlier and facilitating more proactive engagement present opportunities to improve accessibility and continuity of bereavement support across the system.

Bereavement and mental health support are closely connected but can require differentiated approaches. Bereavement‑related psychological need is frequently managed within general mental health services, highlighting both overlap and tension between these systems. While there are clear intersections, particularly where grief is associated with depression, anxiety, or trauma, the data shows that bereavement itself is not recognised or treated as a distinct area requiring specialist mental health provision.

Within general mental health services, there is a distinction between grief and mental health conditions, “we don’t actually treat bereavement in and of itself… it’s not a mental health condition. It’s a normal life process” (011 012). This approach also spans psychosocial care in children and young people, “We... have had young people referred where another family member may be receiving end-of-life care... if that's kind of the primary need, we would probably signpost to what support is available, often through hospices... rather than directly get involved” (037). Support is provided if bereavement associated mental health conditions meet diagnostic thresholds. Then, care pathways are clear and standardised, “if they're presenting with that complex bereavement and that depression, they're having that interpersonal therapy... in line with the NICE guidance” (011 012), with therapeutic input focusing on managing symptoms such as depression and anxiety rather than grief alone. This reflects a mental health system that is clinically robust, and evidence based. However, these strengths also highlight a structural limitation, as access to NICE-aligned services are designed around diagnosable mental health conditions. As a result, there is a disconnect between bereavement as a universal experience and access to structured psychological support.

In contrast, specialist bereavement services provide distinct approaches that focus on the relational, emotional, and contextual dimensions of grief. These models are often non-clinical, emphasising lived experience, connection, and meaning making. For example, one service described their approach as “it is not therapy and it’s not counselling. It is grief work” (027). These services frequently incorporate flexible and  informal forms of support, including opportunities for families to “come together, be with other people who... had a similar experience… you may just want to make a friend with someone who's had the same [experience]… they'll get an assessment from a grief support worker and then talk about what they need… whether they want to come to our bereavement support programmes, which are group sessions where we do a range of things around processing grief and memory-making and lots of different bits and pieces” (027). Such models reflect a broader conceptualisation of support that extends beyond reduction of symptoms such as depression or anxiety to social connection, emotional processing, peer-support and meaning making.

Similarly, specialist pathways enable continuity and targeted support over time, including structured follow‑up and family‑centred approaches. Examples include services that provide ongoing engagement through helplines, events, and family support pathways rather than fixed interventions. Some offer coordinated support across the first year of bereavement and beyond, with “clear pathways… [and] families… contacted at regular intervals” (024), others use models that provide support through eight to twelve bereavement sessions (030 031 032 033). Nevertheless, specialist support can be time‑limited and does not reflect the ongoing and evolving nature of grief. Gaps are therefore present in longer‑term and family‑wide support, while some structured provision exists.

Despite the strengths, access to specialist bereavement support remains constrained by capacity, eligibility criteria, and variability in service provision. This creates a gap between identified need and appropriate support, particularly for individuals whose experiences of grief are significant but do not meet clinical thresholds for mental health intervention. In these cases, individuals may rely on general mental health services that are not designed to address bereavement-specific needs or may fall between services altogether. This misalignment between need and provision is reflected in stakeholder perspectives, with one participant noting, “what do we mean by our bereavement model of care?... [it] isn't high level complexity... but for those people that do need that, where can that be quickly accessed and signposted to? When it's not a mental health service, there's something in between... they're just gaps in service provision. But maybe as a collective, there's opportunities there” (035). 

Overall, equity of access to bereavement support is shaped not only by the availability of services but by system organisation, particularly in terms of capacity, design, and navigability. While there is clear evidence of compassionate, flexible, and high-quality provision, including rapid response models, coordinated multidisciplinary practice, and alignment with NICE guidance, these examples are not consistently integrated across the system. While general mental health provision offers structured, evidence-based care for diagnosable conditions, specialist bereavement services provide relational and flexible support that better reflects the nature of grief. However, the lack of clear differentiation and alignment between these pathways creates variability in access and experience. Strengthening integration while maintaining the distinct contributions of each approach presents a key opportunity to improve how bereavement-related need is recognised and supported across the system.

2. Children, young people and families benefit from tailored bereavement support

Children, young people, and families have distinct needs shaped by developmental stage, family context, and the circumstances surrounding loss. While there are examples of strong, specialist and relational care, these are not consistently available across the system, resulting in uneven experiences and unmet need in bereavement support, reflecting limitations in system design, service thresholds, and continuity of provision.

Developmental needs require flexible approaches. Children and young people experience bereavement differently at different stages of development, requiring tailored and flexible approaches to support.

Adolescence is recognised as a particularly challenging stage for engagement with bereavement support, with services acknowledging that, “one area that we… haven’t got right yet is the teenage group and how we reach them, how we get them to come to our service and then engage with it” (027).  Furthermore, teenagers need different types of support to younger children and that this is an area that needs growth (003 004). Challenges also arise when services have strict eligibility criteria that does not fit the unique circumstances of this age group. For example, when young people reach adulthood, it was noted that “we don’t provide a service to anybody over the age of 18… a child that is 18 that is in sixth form… all of that support… the family get nothing compared to… if they were under 18” (015 016 017), illustrating a cliff‑edge in provision. This highlights the need for more flexible and developmentally appropriate approaches for this transition age group.

Education settings have a key role in supporting children affected by bereavement with professionals and an environment they are familiar with. Good practice is evident in early intervention and support for children. For example, in cases where a child within the school has died, “through the early years settings, there is bereavement support… they support the setting to speak to other children's parents and support them with things they can do… to support the children understand that their friend isn't coming back” (010). This includes both anticipatory support where death is expected and responsive support following sudden loss, demonstrating a flexible and developmentally appropriate approach. The involvement of educational psychology teams is reported as usual practice in educational settings (010 028) and trauma-informed approaches further strengthen this model. However, there is recognition that “whilst they do… trauma-informed training… they’re not bereavement specialists… the offer is not delivered by anyone where this is their area of expertise” (010). Further need for bereavement specialists to play a role in supporting both staff and students within educational settings is described by professionals, as illustrated in the case of “helping with contagion for suspected suicides… we haven’t had … contagion as an issue in Surrey… we’ve been really effective… in picking up support for other pupils and other people who know the child straight away” (015 016 017).

Children’s unique grief needs should be considered within wider family‑centred care. It is reported that “children’s emotional needs are sometimes overshadowed by those of the patient or primary carers… leaving them without consistent guidance to process grief… there are common misconceptions that children should be kept apart from conversations about death and dying, with adults believing… that it’s in their best interests to shield them” (019). Specialist and community-based models demonstrate how tailored provision can meet these needs. For example, available support includes child-specific group interventions, such as provision for “children who've lost parents or close loved ones" (035). One hospice programme is described as providing “staff trained to support very young children or families as a whole, helping them to talk about the illness, plan for the future, and process grief in age-appropriate ways, even when the child is too young to engage in traditional counselling” (019). Importantly, these models often extend beyond clinical interventions to include informal and relational approaches. However, these forms of support can be reliant on hospice charity funding and lack sustainable resourcing. 

Presence, continuity, and trust are the foundations of effective bereavement care for children and families. Relational continuity, particularly where professionals are present at or soon after a death, was described as critical to building trust and enabling meaningful support. One participant reflected that “for parents it means so much to have somebody there right from the start and you can really build your relationship with them” (015 016 017), emphasising the importance of early, consistent contact. 

Ongoing, proactive support, rather than episodic or reactive intervention, enables families to process grief over time and reduces distress. For example, follow‑up approaches that include immediate engagement and continued contact were described as essential, particularly in circumstances when a child has died, “there’s no end to our care… we carry on because there’s many things for these families that come up… way after… there may be touch points… different milestones that may be difficult” (015 016 017). Presence and continuity of care also play a role in reducing longer-term distress. As described by one participant, “you're never going to lose the trauma of the event... for the families, but it makes navigating it easier... we're really keen... on the importance of not re-traumatising families through the system of response... there's a lot of evidence... around that impact of losing a child on life expectancy for parents… so anything that... will help some of that process is really important” (015 016 017). Conversely, gaps in early support can have lasting impacts, with families describing situations where “they found that really difficult... because... there wasn’t anything instantly in place” (015 016 017), demonstrating the importance of timely bereavement interventions. Nevertheless, access to continued and longer-term support has been identified as an area of need, “children and young people, need ongoing support beyond what hospice services provide” (019).

Early identification and pre‑bereavement support further strengthen continuity and trust and relationship building. Where services are involved earlier, they are better able to support families over time, as “we hear about the families early, we can really support well in preparing for that death… and… that makes quite a difference” (027). Early emotional and bereavement support is seen as an important area that could be developed further, “families sometimes access support only after a death or major crisis. Earlier identification of children affected by serious illness by professionals around the family such as by healthcare teams, GP’s, schools and community services, could ensure appropriate support is offered sooner to help children process changes gradually in the settings and with approaches that are suitable for them” (019). Moreover, in many cases, families are identified too late, limiting the potential for preparation and early intervention, with recognition that “we often get families a little bit too late, partly around acceptance of diagnosis... acceptance that treatment may not be going to work because that's what we're really doing is preparing children for the death of a loved one” (027). 

Overall, this theme demonstrates that children, young people, and families require a coordinated, developmentally informed approach to bereavement support that prioritises continuity, relational care, and sustained engagement. While there are clear examples of effective practice, provision gaps persist, particularly at transition points. Addressing these challenges will require system‑wide approaches that strengthen pathways across age groups, ensure early and ongoing support, and embed relational continuity as a core principle of bereavement care.

5.4 Notes on the 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 services across Surrey. 

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

• The interviews were not conducted in a uniform manner. Twenty-two were conducted 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 twenty-eight interviews, twelve 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, it may not capture the full diversity of bereavement support provision and experiences across Surrey.

• Finally, bereavement support 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 analysis 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 is 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.

Summary

The analysis of bereavement experiences across Surrey highlights that:

• Equity of access is shaped by system design

• Flexible, culturally responsive, and relational approaches are valued but inconsistent

• Complex and fragmented pathways affect access and continuity

• Bereavement and mental health services are complementary but not fully aligned

• Children, young people, and families require targeted support

Across all themes, bereavement outcomes are shaped less by the presence of individual services and more by how effectively the system enables access, coordination, and continuity of support.

Addressing these challenges will require a whole system approach, with a focus on:

• Improving awareness, visibility and navigation

• Strengthening coordination and coherence across services

• Expanding access to specialist bereavement pathways

• Designing services around the needs of children, families and diverse communities.

6. Hearing from service-users and residents

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

• VCFSE 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 The-Commission-on-Palliative-and-End-of-Life-Care-–-March-25.pdf [83]

Insights from the Echoes Family Feedback Report (2026), conducted by Momentum Children’s Charity with bereaved children and young people and their families found the following (full survey available in the appendices):

1. What works well in practice

• Consistent, trusted relationships – families value regular, informal contact (e.g. phone/WhatsApp) and feeling known over time.

• Flexible, family‑led support – no fixed pathway; support adapts depending on need and stage of bereavement.

• Combination of emotional and practical support – therapies, peer connection, respite and advocacy together help families cope day‑to‑day.

• Peer connection opportunities – meeting others with shared experience reduces isolation for both parents and siblings.

• Respite and reflective spaces – time away is consistently described as highly impactful.

Survey insight: 100% of both parents/carers and siblings reported improved emotional wellbeing with support

2. What requires improvement (service level)

• Support for teenagers and older children – needs differ significantly and require more tailored approaches.

• Clarity and awareness of therapeutic offer – some families are unsure what support is available post‑bereavement.

• Accessibility and flexibility – timing and location of support can affect engagement.

• Extended family support – growing recognition of unmet need among grandparents.

3. What works well / needs improvement across Surrey

What works well:

• Strong presence of specialist voluntary sector organisations.

• Families often access support through a mix of services (including hospices, charities, schools and GPs).

What could be strengthened:

• More coordinated, “wraparound” care planning across organisations.

• Clearer pathways and signposting between services.

• Opportunities for more formal MDT or partnership working.

• Reducing reliance on families to navigate support themselves at a time of crisis.

4. Unmet need

Survey findings highlight several consistent areas of unmet or emerging need:

• Sibling support – emotional wellbeing, peer relationships and confidence

• Social isolation – many families withdraw and need supported re‑engagement

• Practical pressures – finance, housing and day‑to‑day functioning remain challenging for many families (noted by 72% of parents)

• Access to emotional support – some families would not access therapy without proactive provision

• Long‑term support – bereavement impact often persists for years, with need not limited to early stages

Hospice bereavement service feedback is gathered from service-user groups, surveys, compliments and complaints.

Feedback from service-users of Princess Alice hospice bereavement support found that:

• Bereavement counselling and group support were highly valued.

• Volunteers played a meaningful role in emotional support.

• Thoughtful gestures like anniversary cards were appreciated.

• Some users felt well-informed and appreciated the support offered, even if they chose not to engage.

Feedback from service-users of Shooting Star Children’s Hospices discussed bereavement services as being crucial to families. Words used to describe the bereavement support include:

• Compassionate care was raised as being important.

• It was important to parents and families that the service provides bereavement support for all deaths of children and young people, whether they are under the care of the hospice in life, or are new to the hospice when bereaved.

• Parents commented on the skills of the therapy team to support children and adults and the range of therapies available.

• Parents felt interventions supported management of trauma and prevention of mental health difficulties.

Phyllis Tuckwell engagement group for bereaved carers and family members raised the following themes:

• Offer in both digital and paper formats

• Offer to all family members

• Written information needs to be re-informed with human contact

• Provide early and on-going support for carers

• Compassionate and personalised care is important

• Practical information including finances and benefits is important

• It is positive being with other empathetic people with shared experiences, feeling understood.

• The continuity of support was important, feeling safe and held.

Participants discussed that there can be too much information early on in bereavement and found verbal advice more useful than written advice at this time.

Participants discussed the benefit of the hospice working alongside other healthcare professionals, as it can become confusing about who should do what and who is responsible for what task.

The Surrey Minority Ethnic Forum evidence base shows that ethnic minority communities in Surrey often face layered barriers when accessing care and support services. These include low awareness, stigma, language and digital exclusion, lack of trust, fear of judgement, practical access issues, perceived cost, discrimination, services that feel generic or culturally unsafe, and wider determinants such as housing, income, employment, transport and social isolation.

The updated Speaking for Ourselves report adds an important peer-led perspective. It shows that people want services to understand health holistically, treat lived experience as evidence, communicate in accessible ways, recognise culture and faith without stereotyping, and listen until change happens. The strongest message is that access is not only about providing a service. People need to know it exists, believe it is for them, trust that it is safe, and feel that it understands their culture, faith, language, family context and lived experience.

The focus groups conducted are therefore an opportunity to move from consultation to genuine co-production. They should help design support pathways that are visible, trusted, culturally responsive, practical to access and connected to the community routes that people already use.

• Use trusted community routes for access and support: Use SMEF networks, community groups, faith venues and trusted community settings for information and support. Do not rely only on standard NHS communication channels.

• Use plain, holistic and culturally sensitive language: Consider using terms such as wellbeing, coping, emotional support, family support, spiritual support and grief support, alongside clinical terms such as psychological support.

• Make confidentiality, cost and purpose explicit: All signposting, invitations and service information should clearly state whether support is free, confidential, voluntary and not linked to immigration, benefits or statutory intervention.

• Provide multiple access routes: Offer transport reimbursement, interpretation, translated and easy-read information, phone routes, drop-ins, non-digital booking and accessible venues. Avoid assuming that online-only engagement is sufficient.

• Use professional interpreters and protect privacy: Do not assume family members can translate sensitive discussions. Professional interpretation and translated materials are important for safety, dignity and informed consent. Easy read options can be easily and better translated by the online translations services/apps.

• Design for cultural safety, not just availability: Review whether services feel welcoming to ethnic minority communities, including representation, location, facilitation, family involvement, faith and spiritual needs, and understanding of racism and discrimination.

• Recognise wider determinants of health: Holistic support is necessary. Ask about transport, housing, income, employment, caring responsibilities, social isolation and feeling safe, as these shape whether people can access care and support.

• Develop warm handovers and community navigation: People may need support to move from community conversations into formal services. Community navigators, link workers or trained peer-supporters could support this bridge.

• Embed peer research and co-production: Treat lived experience as valid evidence. Build peer research, community-led analysis and “you said, we did” feedback loops into service planning, not just one-off consultation.

• Train and support professionals: Professionals should receive cultural humility, anti-racism, trauma-informed and bereavement-sensitive training, including how culture, faith, language and family roles shape communication about illness, death and grief.

• Collect and use equality data meaningfully: Monitor access and outcomes by ethnicity, language, age, gender, disability, caring role, deprivation and migration-related factors where appropriate, so gaps can be identified and acted on.

Participants in the bereavement focus group held with Surrey Minority Ethnic Forum with six people, five female, one male, of south Asian, African and white other (Eastern European) ethnicities discussed their bereavement needs following death of a loved one including their child, parent, spouse and uncle. Attendees were of Muslim and Christian faiths. One of the bereaved attendees is a parent of an autistic child.

Prior to the session, culturally inclusive language was agreed and used during the focus group to enable the group to feel culturally inclusive and safe. To describe death and bereavement during the session, the word ‘loss’ was used. Support for ‘emotional wellbeing’ was used to describe support for mental health or psychological support.

Trauma of loss: The majority of the group discussed that the deaths of their loved ones were sudden and unexpected. Where death was sudden and unexpected, the attendees spoke of the impact to their emotional wellbeing and the shock of their death, having spoken to family members within a short time frame before death and when they appeared healthy and well. Two participants discussed the traumatic circumstances around their loved one’s death and this adding to their trauma and grief. Where the death was expected due to a life-limiting condition, the families experience of care and quality of death was poor. One attendee reported that family members had increased alcohol use as a result of their loss.

Language barriers: Two of the six attendees expressed challenges with accessing services due to language barriers. This included relying on family members to interpret for healthcare professionals and the impact on being able to communicate at times of increased trauma, when communicating in English as a second language. One participant expressed the importance of community support, including support from SMEF Community Development Workers and the mosque, in assisting with communication and interpretation between individuals and health professionals, and with practical matters such as arranging the funeral.

Health literacy, lack of awareness that bereavement support exists: The group discussed that at the time of their loss, they were not aware that bereavement support exists. Not just lack of awareness of services supporting bereavement in Surrey, but lack of awareness of it as a service that is available. The group all acknowledged that bereavement support would have been helpful and that they wanted to talk with peer groups or support services about their loss, but were not aware the support existed. Two reported that the first time they had heard of bereavement support was at the focus group.

Bereavement support not offered or signposted by professionals: Five of the six attendees reported that bereavement and/or mental health support (counselling, talking therapies) had not been offered after the loss of their loved one. One accessed counselling privately for mental health support during a subsequent pregnancy following the death of their first child. Some of the group spoke of wider family members at times not fully understanding their loss and saying comments that were unhelpful or damaging emotionally. Three of the group spoke of not having family members living in the UK and having to rely on friends, faith groups, or members of the community.

Un-conscious bias and racism: The groups discussed the impact of health professional’s un-conscious bias when working with cultures and ethnicities which are not the same as their own. Discussions included, professionals having assumed consanguinity (marriage between blood relatives) of spousal relationships, when this was not the case. This had added to the trauma following loss, as there was a feeling of blame related to their loss. When first presenting with a health issue which later resulted in loss, their concerns were dismissed with presentation being linked to differences caused by race. It was also felt that the need for support for loss was dismissed due to being of male gender.

Poor experience of health services and subsequent lack of trust impacting access to support: Three participants discussed that they had poor experiences of care resulting in additional trauma, poor emotional wellbeing outcomes and reduced trust in NHS health services, creating a barrier to accessing further support. Poor quality of care at end of life was raised as a contributary factor, alongside additional factors as discussed above, including language, racism and un-conscious bias. Discussions included that the previous poor experiences of care had resulted in their declining support or not seeking support due to mistrust. Where medication had been prescribed to support emotional wellbeing following loss, the medication had a significant adverse effect and was not followed up by the GP to ensure the intervention had resulted in the desired outcome. This had subsequently resulted in a barrier to accessing further support, additional trauma and mistrust.

The importance of religion and religious community in bereavement support: All participants spoke of faith as being a core part of their experience of loss. Participants spoke of their faith community and other faith communities, being a key support. All discussed finding support in their faith at their time of loss, but had differing experiences of support from their faith community. For one participant whose first language is Arabic, the Imam, Mosque and Muslim community provided spiritual, emotional and practical support in their first language following the death of their spouse. Some discussed that they did not feel they could approach their faith leader to speak about their loss, as they felt the faith leader did not have expertise to support with their emotions and grief. Some discussed that the religious teachings around death were at times not helpful to their grief and emotions, that whilst their faith was important, that discussion of seeing loved ones in their faith’s afterlife did not help with feelings of loss. One participant discussed finding peer-support in a faith group other to her own faith, which had occurred due to proximity of the church to activities of her daily life, attendees of the church welcomed them and offered a listening ear and compassion. Participants also spoke of the barriers in finding support for loss in a predominantly Christian country and finding people who understand your faith and culture.

“I used to walk into the church. They were old ladies, old volunteers running the church. I would just go, and I would sit with them, and I would talk to them. And they comforted me so much. They were very kind. They would say, oh, mum, you're going through so much. Come, let's have a cup of tea or sit down and have a drink or just listen to me or give me a shoulder and say nothing against my religion. I felt very comforted and I developed a very strong bond with them, and I got close to my real faith also.”

The importance of the workplace in managing bereavement: Three group members spoke of the experience of their workplace and the impact on their grief. One spoke of a positive experience, where their workplace had given and encouraged extended paid leave to recover from loss before returning to work. One focus group member discussed that their workplace had required them to take annual leave of a maximum of two weeks following their loss. This had significant impact on their emotions and also practical implications, as their father had died overseas and as the elder son, culturally they were expected to lead funeral preparations and manage their father’s estate. Their workplace did not have a bereavement policy in place, which meant there was not an effective process to support at the time. Another attendee discussed that as a result of their loss and family health conditions, they now enquire if any future employers have a bereavement policy in place, to ensure there is a process that can be followed.

Experiences of lack of support for people with learning disabilities: One participant spoke of lack of support in explaining death and dying for children with learning disabilities, with the added barrier of finding appropriate tools where the carers first language is not English.

The issues raised were consistent with findings from the wider literature, with lack of awareness, accessibility of information and lack of cultural inclusion being raised as barrier to support. A paper exploring support and bereavement following suicide within GRT communities also found literacy including digital literacy to be a barrier in being able to access self-care resources and service information. [84] This has also been found for Surrey’s asylum and refugee communities, where reading, writing and digital literacy are barriers to accessing support. [85]

7. Provision mapped against national and local guidance

7.1. National policy and guidance

Nationally, bereavement emotional wellbeing support and clinical interventions are guided by NHS England (NHSE), National Institute for Clinical Excellence (NICE), professional bodies such as the General Medical Council (GMC) and VCFSE organisations representing the needs of people with life-limiting conditions or hospice care, including Marie Curie, Hospice UK and Together for Short Lives.

Key documents include:

• Government Fit for the future: NHS 10 Year Health Plan for England [86](5)

• NHSE Service Specifications for Palliative and end of life care 2023, adults and paediatric. [87][88]

• NHSE National Palliative and End of Life Care Partnership Ambitions framework 2021 NHS England » Ambitions for palliative and end of life care [89]

• NHSE Palliative and End of Life Care Statutory Guidance for Integrated Care Boards (ICB’s) NHS England » Palliative and end of life care: Statutory guidance for integrated care boards (ICBs) [90]

• Three Year Maternity Plan 2023 NHS England » Three year delivery plan for maternity and neonatal services [8]

• National Bereavement Care Pathway NBCP_Working_Together_Resource_Toolkit.pdf [91]

• NHSE Dying well in custody charter 2018 (updated 2024) NHS England » Dying well in custody charter and self assessment tool [92]

• NICE guidelines and quality standards

• The National Bereavement Care Toolkit (NBCP) [91] NBCP_Working_Together_Resource_Toolkit.pdf, created by Sands and now included in plans to improve maternity and neonatal services

• National Bereavement Alliance (an umbrella organisation supporting bereavement organisations and practitioners). Support with bereavement – National Bereavement Alliance [93]

The government is developing a Palliative and End of Care Modern Service Framework for England, which is due to be published Spring 2026. This will be aligned to the recently published 10 Year Health Plan, aiming to shift care out of hospitals and into the community, enabling personalised, person centred care for people of all ages and their families and carers. [94]

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, including aspects of bereavement in the context of the family and loved ones of a person receiving PEoLC.

7.2. 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. [95] The priorities aligned with the National Ambitions framework. The Surrey Health and Wellbeing Strategy 2026 update, update emphasises priority populations and neighbourhoods, included a more explicit inclusion of the needs of babies, children and young people and a shared understanding of prevention. [96]

7.3 Analysis of provision against national guidance

The NHS England self-assessment tool is structured around the Six Ambitions for Palliative and 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.

Although the NHS England Ambitions focus on the needs of the dying person, the document states that they should also be read as ambitions for carers, families, those important to the dying person and, where appropriate, for people who have been bereaved. Ambitions one, three and six include identification of the needs most important to the person, including psychological and social needs and facilitate access to pre-bereavement and bereavement support.

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. hospitals, hospices, care homes, prisons. (NHS England » Ambitions for palliative and end of life care NHS England » Palliative and end of life care: Statutory guidance for integrated care boards (ICBs)) [89]

The Surrey Heartlands ICB PEoLC Strategy is aligned to the national ambitions (Palliative & End of Life Care Strategy 2020-2025). [95]

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

The national specification for PEoLC for adults B1674-specialist-palliative-and-end-of-life-care-services-adult-service-specification.pdf [97] under specialist levels palliative care service, for people with progressive life-limiting illness key components include:

‘bereavement support for people with complex needs.’

The specification states that quality PEoLC includes giving care and support to families, carers and all those who are important to the dying person. This must encompass good bereavement and pre-bereavement care, including for children and young people and consideration of intergenerational and individual circumstances.

The national specification for PEoLC for children and young people states that bereavement support for non-complex grief should be met as an enhanced service, with those at ‘high risk’ of complex grief or presenting with complex grief, supported by specialist PEoLC services.

‘A specialist children and young people palliative care team is defined as one that is supported by a doctor with specialty training (a consultant) in paediatric palliative medicine. They are supported in providing expert care and support to children, young people and families by specialist level professionals such as specialist nurses, pharmacists and psychologists where this is needed.

The provider must ensure the delivery of the components of a specialist palliative care team, which include:

‘identification of those with complex grief and at ‘high risk’, and their signposting/referral to appropriate local and/or specialist bereavement services.’

B1675-specialist-palliative-and-end-of-life-care-services-cyp-service-spec.pdf.pdf [98]

NICE quality standards outline the responsibilities of Health and care practitioners, service providers and commissioners in relation to grief and loss. Quality statement 5: Support for grief and loss for parents or carers | End of life care for infants, children and young people | Quality standards | NICE [99]

Health and social care practitioners (such as secondary care doctors, nurses, GPs and community nurses) are aware of referral pathways to services that offer grief and loss support to parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider the support needs of siblings.

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that systems are in place to offer grief and loss support to parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider how support can be provided to siblings.

Commissioners ensure that they commission services that include grief and loss support for parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider how the services they commission can support siblings.

7.4 National VCFSE bereavement strategies

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

1. To improve equity of access

2. To enhance quality care

3. To achieve sustainability (financial and staffing)

From Hospice Strategy Document 22April2024_0.pdf [100]

The UK Commission on Bereavement outlined eight principles for change bereavement-is-everyone’s-business-full-report [101]

• I am supported by my family, my friends and the communities around me

• I am sensitively supported by my school, college or workplace during my bereavement

• I am well supported before and during the death, and feel confident that the person who died received appropriate and compassionate care

• The things I must do after a death are simple and straightforward

• I am compassionately and helpfully supported by those whose job brings them into contact with me through my bereavement

• I have access to an affordable and meaningful funeral

• I feel secure in my home and have the right financial support

• I can easily find and access the right emotional bereavement support for my circumstance

8. Bereavement by suicide

The Surrey suicide learning process includes regular reviewing the ONS data and carrying out suicide audits of coroner’s files.

The 2022 to 2023 Surrey suicide audit has identified that 40% of people who had died in this period, had experienced a bereavement. (please note that in Surrey suicide audits are no longer published and are used to support prevention and learning work).

Nationally and in Surrey there has been an increase in deaths caused by suicide in older adults. The factors that have been identified include:

• The loss of a spouse.

• The loss of a person that they cared for who had a serious health condition.

Suicide all- age summary

When an individual takes their own life, the impact on family, friends and communities is devastating. The grief can last for many years, and each death can send ripples through communities.

Suicide is often the end point of a complex history of risk factors and distressing events. Prevention needs to understand this complexity.

Prevention and early intervention are a key element suicide prevention, as well as providing support to those who have been bereaved by suicide.

8.1 National context

The Suicide prevention strategy for England: 2023 to 2028 [102] was published in September 2023 and sets out the government’s ambitions for suicide prevention. The aims of the strategy are to reduce suicide rates between 2023 and 2028 and improve support for individuals with a history of self-harm and those who have experienced bereavement due to suicide. The strategy sets out the following priorities to achieve these aims:

1. Enhance data and evidence

• Improve the quality and use of data to support timely, evidence-informed interventions.

2. Targeted support for high-risk groups, with a focus on:

• Children and young people

• Middle-aged men

• People who have self-harmed

• Those in contact with mental health or justice services

• Autistic individuals

• Pregnant women and new mothers

3. Address common risk factors, by providing early and tailored support for those experiencing:

• Physical illness

• Financial hardship

• Gambling

• Problematic substance use

• Social isolation and loneliness

• Domestic abuse

4. Promote online safety and media responsibility

• Reduce harm and improve support through safe online spaces and responsible media messaging.

5. Effective crisis support

• Ensure accessible and responsive crisis services across sectors.

6. Restrict access to means

• Reduce access to methods of suicide where appropriate.

7. Bereavement Support

• Offer effective support to those affected by suicide

8. Whole-society Approach

• Make suicide prevention a shared responsibility across communities and sectors.

The provision of support after a suspected suicide is critical to addressing suicide risk and improving the emotional wellbeing of people who have been bereaved by suicide. This is clear priority in the national suicide prevention strategy.

National recommendations for suicide bereavement [103] include:

• The implementation of national minimum standards in postvention services

• A national online resource for those bereaved or affected by suicide

• Campaign to raise awareness of the impact of suicide bereavement

• Suicide bereavement training for front line staff. Evidence-based suicide bereavement training should be mandatory for those who provide postvention services.

• Support for people with risk taking behaviours

• Workplace suicide bereavement support

• Further research on the impact of suicide.

Additionally, a key action in the NHS long term plan was to roll out suicide bereavement support services across all Integrated Care Systems (ICSs) by 2023/24. [104] While all areas have strived for this, a lack of sustainable funding has been a challenge across the country. Some areas report commissioning suicide bereavement services then a few years later, reducing services to reflect the available funding.

8.2 Need for suicide bereavement support

The ripple effect of suicide has been identified nationally and internationally.

Estimates vary on how many people are affected by each suicide – ranging from six to sixty people. A conservative estimate of ten people directly affected by each of these deaths suggests almost 50,000 people annually in England could benefit from support after suicide. In Surrey around 920 people could benefit from support in one year, although it is unlikely that all people bereaved by suicide would come forward for support. Some may feel that they do not need support, others may feel concerned about the stigma of suicide.

The figure above shows the ripple of suicide and how suicide bereavement impact many people. As the ripple gets bigger, more people are impacted.

Suicide bereavement leaves people at a higher risk of suicide themselves. A survey in 2010 found that friends and relatives of people who die by suicide have a 1 in 10 risk of making a suicide attempt after their loss. [104] On average 92 people a year die by suicide in Surrey.

Compared with people who have been bereaved through other causes, individuals who are coping with a loss from suicide are more likely to experience increased risk of psychiatric admission, depression, and grief beyond 6-12 months of bereavement which severely disrupts the person's ability to carry out normal activities such as work, relationships, and social functioning. People bereaved by suicide are 80% more likely to drop out of education or work than their peers, while 8% of young adults bereaved by suicide surveyed had dropped out of an educational course or a job since the death.

Close family members, particularly parents, spouses or partners and children, are thought to be the most vulnerable groups following a suicide, but there are also risks for wider family, friends, colleagues and the community.

National survey data suggests that two thirds of people in the UK bereaved by suicide receive no formal support from health or mental health services, the voluntary sector, employers or education providers.

The cost of a suicide has been calculated as £1.67m, with 70% of that figure representing the emotional impact on relatives. An economic evaluation of an outreach service in Australia demonstrated a direct cost saving of around AUS$800 (around £433) each year for every person supported.

8.3 Understanding suicide bereavement in Surrey

Death by suicide can affect a broad range of people. The impact of the death can be affected by the relationship of the individual to the deceased.

Through the Surrey suicide prevention work, two risk groups around bereavement have been identified. These are:

Experiencing a bereavement: Bereavement has been identified as a risk factor for poor mental health and wellbeing. It has been highlighted as a contributing risk factor to poor mental health and suicide.

Experiencing a bereavement through a suspected suicide or a suicide: People who have experienced a bereavement by suicide are more likely to experience depression, anxiety, poor mental health and thoughts of suicide.

The people affected be suicide can be considered in four groups:

Group 1: Suicide bereaved long-term: family, partners, close friends.

Group 2: Suicide bereaved short-term: friends, peers, close work colleagues, longstanding health / social care workers, teachers.

Group 3: Suicide affected: first responders (family, friends, members of the public, police, paramedics), those directly involved such as train drivers, neighbours and local residents, teachers, classmates, co-workers, health / social care staff.

Group 4: Suicide exposed: local groups, communities, passers-by, social groups, faith groups, acquaintances, wider peer groups including those via social media contacts (e.g. Facebook friends)

Feedback from people who have experienced loss through suicide

For the 2025- 2030 Surrey suicide prevention strategy [105] one-to-one interviews were carried out with people who have accessed the Surrey support after suicide service. Feedback emphasises the importance of having an embedded compassionate, consistent suicide bereavement service.

Surrey themes

Intelligence gathered from people bereaved by suicide identified areas that impacted their grief. These include:

• How they were told about the loss of a loved one

• The coroners process

• Support

• Children and young people.

Police response and involvement

Loved ones fed back that where the police had been the first contact that have informed him of their sad loss, the way the police told them was important.

There were some instances where people had been told in a kind and compassionate way; and some circumstances where people reported they were told in a way that felt very cold. A key learning from this is to ensure that when someone is told of the loss of a loved one, they are told in a kind and compassionate manner.

In some cases, electronics belonging to the person who had died were removed and taken away by the police for analysis. While this is important and part of the investigation for the police, loved ones explained that this had been difficult, and they did not understand the reason for this. A key learning from this is to ensure that if electronics are taken away, this is clearly explained to loved ones.

Coroners process

Loved ones going through the Coroner’s inquest process reported:

• Feeling isolated

• Feeling angry with services

• Having lots of questions and often not knowing who to speak to

• Feeling unheard

• Feeling anxious and scared

• Having thoughts of suicide

While the coroners process is an important part of the coronial system, it is important that people have support from an advocate or a bereavement service. This is to ensure but they are looked after during this difficult process and that they can engage in the process.

Support

People bereaved by suicide said that bereavement support provided emotional stability during difficult times. Many highlighted the importance of consistent weekly sessions, which allowed them to process their grief at their own pace. Service-users felt comfortable expressing emotions that they could not share with family or friends, which significantly contributed to their healing.

Children and young people

When there have been deaths by suicide in children and young people, the ripple has been greater with many people impacted.

The guidance for school and setting leaders on responding to child death (including suspected suicide), supports settings to prepare a response to child death helps rebuild the wellbeing of the community and prevent contagion.

Further to this there is a Surrey Healthy Schools Suicide Prevention Toolkit: a collection of local and national resources to support schools and colleges in Surrey with suicide prevention, intervention, postvention and bereavement support, underpinned by a whole-school approach to emotional wellbeing and mental health. (Surrey Healthy Schools | Healthy Surrey) [115]

8.4 Surrey suicide prevention strategy

The Surrey Suicide Prevention Strategy 2025 to 2030 [105] has identified five action areas that cover the eight priorities in the national strategy. These are:

A. Listening to people with experience

B. Data learning and intelligence

C. Tailored support for high-risk groups and circumstances

D. Suicide safer communities

E. Bereavement

To deliver the bereavement action area, seven actions have been identified.

1. Ensure that there is sustainable suicide bereavement support across Surrey and that Surrey continues to fund suicide bereavement support.

2. Provide a suicide bereavement support service for children and young people - taking learning on service provision from other areas.

3. Raise awareness of suicide bereavement.

4. Train frontline professionals and community members in suicide bereavement awareness.

5. Ensure that contracted suicide bereavement services are regularly reviewed against national strategies.

6. Ensure that near the end of the contract, the suicide bereavement support offer in Surrey is reviewed and that service specifications and contracts are updated to reflect local need.

7. Raise awareness of the support available to people going through investigation processes with services and coroner’s inquest process.

These actions are to be delivered over the course of a strategy, and these are monitored by the Surrey Suicide Prevention Board.

8.5 Suicide bereavement provision in Surrey

There is a commissioned suicide bereavement support service in Surrey. The service is funded via NHS England, with funding is given to local ICBs. Surrey and Sussex ICB have then given this funding to Surrey Public Health team to commission the service on their behalf.

The service is contracted to support anyone who has been bereaved or impacted by a suspected suicide or suicide.

The specific aims of this service are:

• to reduce the distress experienced by people after a suicide

• to reduce stigma and isolation felt by people bereaved by suicide

• to improve the emotional wellbeing of service-users enabling them to return to functioning within their day-to-day life

• to reduce demand for mental health and other services

• to reduce risk of suicide in those who have been bereaved/affected by suicide

• to reduce the risk of linked suicides and the emergence of clusters

The levels of support will differ according to each person as their circumstances will be different. Some of the support to be offered include:

• for every case carry out a welfare assessment/ check that also asks about other vulnerable people who have been impacted

• dealing with police

• financial guidance and advocacy

• emotional support

• spiritual support to give comfort and support to the family.

• dealing with employers, schools.

• dealing with the affairs of the deceased

• liaising with multi agencies such as Coroner, medical professionals, and police.

• support dealing with funeral arrangements.

• referral to counselling support in Surrey

It is estimated that 920 people a year are bereaved by suicide in Surrey. Therefore, the contract anticipates that 25% of these (230 people) are given support.

9. The financial cost of bereavement

As discussed in section 3, bereavement can lead to anxiety, depression, complicated grief, PTSD and suicidal ideation. Analysis has found that the total cost of all mental ill health in England in 2022 was £300 billion. The cost includes:

1. Economic costs of £110bn: Losses to the economy due to mental ill health. These include business costs of sickness absence, staff turnover and unemployment among people with mental ill health.  

2. Human costs of £130bn: The monetary value, of reduced quality of life and premature mortality among people living with mental health difficulties.  

3. Health and care costs of £60bn: This includes support provided by public services and informal care.[106]

Research has found devastating social and economic impact for bereaved parents following the death of their child, with the likelihood of un-employment increased by 9% compared to parents who have not been bereaved. [107]

The Samaritans report that in the UK in 2022, 6588 deaths by suicide were recorded. Suicide had an overall cost to the UK economy of £9.58 million. With each death by suicide costing an average of £1.46 million. [108]

Limitations in capturing data for Surrey to assess the financial impact of bereavement include current mental health services not recording bereavement within service reporting, as a causal factor for the persons mental health presentation. The insights gathered from semi-structured interviews across providers for bereavement and mental health needs related to bereavement suggest VCFSE organisations are predominantly meeting the mental health needs of people who have been bereaved. This data is currently captured within internal VCFSE data but is not accessible across the system as part of oversight of population need. Data obtained from hospices is captured within the appendices.

10. Conclusions

Summary

Statutory guidance for ICB’s discusses that commissioners must ‘work to ensure that there is sufficient provision of care service providers available to deliver this, paying particular attention to access to bereavement services. The national PEoLC specifications discuss provision of bereavement support for people with complex needs/ complicated grief or those at ‘high risk’ and the need for specialist bereavement support. National Bereavement Alliance has formed guidance for commissioners regarding Tier 1/ Universal, Tier 2/ Targeted and Tier 3/ Specialist or Indicated levels of support. [109]

The majority Tier 1/ Universal bereavement support is currently delivered by VCSFE and hospices. The Healthy Surrey bereavement page, developed by Surrey County Council, the ICB and system partners, signposts individuals to local and national bereavement support from VCFSE organisations and hospices. The provision is predominantly in English, with some access to video’s, easy read and multilingual provision signposted (requiring the reader to navigate the webpage). Surrey County Council have created a specific page for people with a learning disability and autism, which provides easy read content on the initial landing page, supporting navigation and accessibility.

There is currently no ICB-commissioned Tier 2/ Targeted bereavement service specifically for bereaved children and young people. Children and young people experiencing anxiety, depression or other mental health difficulties associated with bereavement may be able to access support through SABP talking therapies services, where clinically appropriate. However, bereavement has not been captured within SABP referrals and service data as an identified need. Staff subjectively discussed that they are not aware of children and young people accessing SABP Trust services to support with mental health needs related to bereavement and that this may be due to their accessing support elsewhere, such as VCSFE, rather than there being a lack of need in this area. Surrey Educational Psychology Service provides bereavement support to education settings following the death of a pupil, member of staff or other significant bereavement event. Support includes advice to school leaders, guidance on communicating with pupils, staff and families, consultation for school staff, identification of vulnerable pupils, and training on bereavement, loss and trauma-informed practice.

SSCH and VCFSE organisations provide Tier 2/ Targeted support for children and young people. However, this support does not receive statutory funding and so is limited in capacity due to fluctuations in charitable funding. While some VCFSE organisations and adult hospices offer support for children and people who have been bereaved of a parent, not all have capacity or skill set to provide this support.

At present, the majority of Tier 2/ Targeted bereavement support for adults (aged 17 and over) is provided by the VCFSE and hospice sector. ICB-commissioned support is available through one of the four talking therapies providers, SABP, which offers counselling and CBT-based interventions for people experiencing anxiety or depression related to bereavement as part of a time-limited group programme. As discussed by the provider, the staff are not specialists in bereavement and would welcome partnership working to ensure they can access expertise in bereavement counselling and therapies. The remaining three talking therapies services provide a range of time limited CBT, EMDR or counselling for people with anxiety or depression, some of whom may have been bereaved, but do not offer specific support for bereaved people. Some Tier 2/ Targeted support is available through hospital chaplains, for those who have a spiritual need. Bereavement midwives offer support following the death of a baby and have training in support for grief but are not able to provide psychosocial bereavement support and refer into VCFSE charities for on-going provision. Insights from people with lived experience, found that people want to be able to access support at a time following death when they feel it is needed and for a timeframe which meets their needs. Some life events may cause emotions to resurface, and people wanted the support to remain open to them, so that they could access support at key on-going life events if needed. Many discussed that talking therapies were not culturally inclusive, or that they did not want to talk, but wanted more social and not purely psychological medical models of support available through the NHS funded offer.

Hospices and VCSFE organisations provide a wide range of Tier 2/ Targeted bereavement support across both social and medical models, with services often tailored to individual needs. Support is frequently delivered through outreach and community-based approaches, including within community settings, hospitals and hospices. Provision includes initiatives such as peer-support Death Cafés, social prescribing activities (e.g. walking groups and arts-based activities), and spiritual support. These social peer groups and social prescribing, offer support for grief. Insights have highlighted improved outcomes from this approach, such as reduced isolation, improved belonging, improved social integration and improved emotional wellbeing. The Tier 2/ Targeted bereavement support offers prevention of severe mental illness and complicated grief and improved outcomes, by offering early identification and early intervention by trained professionals, practitioners or volunteers. It identifies those who may need Tier 2/ Targeted one-to-one or Tier 3/ Specialist, models of care, preventing escalation of need and providing accessibility by supporting navigation of services and advocating for individuals to voice their need.

Support offered across Surrey is variable, due to lack of capacity and funding challenges for VCSFE and hospices, with some hospices offering support to the wider community and some offering support to only those family members known to the hospice in life. Further variation and unmet need is seen for those experiencing health inequalities, including those where there is a higher risk of bereavement such as those experiencing homelessness. To support equitable access to bereavement support and specialist expertise, additional investment is likely to be required. This could help improve access across the population, identify needs at an earlier stage, and reduce the risk of escalating mental health needs and wider impacts on health and wellbeing, including housing stability. Consideration should be given to expanding specialist provision for groups at increased risk of complex bereavement needs, including children and young people, people bereaved by suicide, sudden or traumatic death, and those experiencing multiple disadvantage. Strengthening early identification and assessment processes may also support timely access to appropriate care pathways and help prevent the escalation of need.

Tier 3/ Specialist support for complicated grief is not currently funded through statutory commissioning arrangements, with much of the provision delivered by hospices through charitable funding. This presents challenges with capacity and system variability in provision. ICB SABP funded services provide support for PTSD or severe mental health, which may have been present pre-bereavement or caused by bereavement. However, people with lived experience have spoken of having referrals rejected when bereavement is discussed as a causal factor for PTSD, due to the service not being a bereavement service. This highlights unmet need and presents a barrier to access in requiring compartmentalisation of need. AFLOAT offer support for Tier 3/ Specialist level infant loss. As discussed in the ACCESS report from SMEF, the current provision is not being accessed by ethnic minority communities and requires further co-design to improve accessibility and equity.

As discussed in sections relating to health inequalities and insights from people with lived experience, cultural and religious views are not included fully within current provision, with people experiencing unconscious bias and racism in their care. This creates negative experiences, which result in people not accessing on-going care and support. People experiencing multiple disadvantage face stigma and barriers to accessing support, due to the interdependence of need and agencies not feeling able to holistically support need and environmental barriers in accessing support. People also spoke of language and stigma creating barriers, with the terms ‘mental health’ being a barrier and ‘bereavement’ not being a term people widely recognise.

A social lack of awareness of bereavement support, not only in how to access support, but as a concept, was discussed. Improved health literacy of services and understanding of grief and the impact of death and loss is required, to support people in discussing bereavement and loss and identifying the support they need. Bereavement can affect a range of social determinants of health, as highlighted through insights from people with lived experience. Participants described impacts on areas including housing, employment, financial wellbeing and social connectedness, and identified a need for greater awareness and understanding of bereavement within workplaces and wider support systems.

Local bereavement provision, alongside nationally provided support, is a strength within Surrey, with a range of social and medical models of support and variety to meet needs. Sustainable funding needs to be identified and implemented to ensure the continuation of support and to reduce variability and ensure timeliness of offer and timeframe to meet needs. Equity of support needs to be improved and co-designed with underserved communities, which would benefit from further co-production and utilisation of community resources and strengths.

The following report by The National Bereavement Alliance highlights how bereavement care should be delivered across a system and the elements that are required. The report speaks to both medical and social models of care and accessibility of support.

The National Bereavement Alliance has suggested the following should be available in each local area:

Sources:

5-CCBS-What-should-be-available-in-each-local-area.pdf [110]

A guide to commissioning bereavement support in England – National Bereavement Alliance [109]

10.1 Recommendations

10.1.1 What are the biggest changes Surrey needs to make 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. Many of the recommendations are in line with the End-of-Life care JSNA recommendations, demonstrating the level of need and where may represent collective opportunity for system change.

Capacity to meet future demand

The report describes increasing deaths, increasing complexity in babies, children and young people and an ageing population, but there is limited modelling of what this means for future bereavement support demand. A key enabler to identify where to target resource will be through undertaking system health economics, capacity and demand analysis. Understanding the likely increase in deaths, numbers of bereaved people and future demand for universal, targeted and specialist support would help commissioners understand the scale of resource required and support longer-term planning.

1. Develop a Surrey wide bereavement strategy

Recommendation: Create a co-ordinated Surrey wide approach that aligns across sectors, NHS, local authority, VCFSE, faith, education and employers. Created in co-production with experts by experience. This should involve:

• Hospices

• Community groups

• Faith groups

• Voluntary organisations

• NHS

• Public health

• Local authority

• Employers

• Education

• Experts by experience

Why?

Death, grief and bereavement affect everybody and affect all aspects of life, Focus groups highlighted the need for awareness of the impact of grief and bereavement and of what support can be accessed.

2. Commissioned Specialist Bereavement Care services for people experiencing complex, traumatic or prolonged grief

Recommendation: Whilst most bereaved people adapt with support from family, friends and community networks, a significant minority experience more complex bereavement needs and require timely access to specialist bereavement care.

Improve access for people experiencing prolonged, traumatic or complicated grief through clearer pathways and sustainable specialist provision. This should involve:

• Hospices

• Community groups

• Faith groups

• Voluntary organisations

• NHS

• Public Health

Why?

There is a current gap in commissioned specialist bereavement support, with services being provided by hospices and VCFSE organisations. Bereavement care does not need to be delivered in a medical model mental health service. Bereavement care can be delivered through social models, within local communities, in families, groups, which people with lived experience expressed a preference for.

Hospices and VCFSE organisations provide specialist expertise in bereavement care and support, drawing on established clinical, counselling and community-based approaches. Support is delivered through a combination of community outreach and in-reach within health and care settings, with counsellors and volunteers who are embedded within, and often trusted by, the communities they serve.

3. Compassionate Communities: invest in a Public Health approach to bereavement

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

Strengthen compassionate communities, peer-support and community-based responses that enable more people to be supported well through existing networks. Refer to Sheffield Compassionate Communities as a potential model. This should involve:

• Public Health

• Local Authorities

• Citizens

• Schools and Colleges

• Family Centres

• Employers

• Faith Communities

• Civic Leaders

• Voluntary Organisations

• Community Groups

• Hospices

• NHS

• Community assets

Why?

Bereavement can be a pivotal point into severe mental illness, poor health outcomes as a result of adverse childhood experiences and multiple disadvantage including homelessness, and substance misuse. Embedding support at a universal level delivered by communities will enable awareness and supported access to specialist care if needed.

4. Improved support for children, young people and young adults

Recommendation: Develop more consistent and equitable access for bereavement care and support. Relational approaches need to be used, supporting the people around the child, as well as the child or young person. Recognising that children and young people live as part of a family, and/or with carers. Care needs to incorporate the trusted bonds with people that children and young people have, with interventions that are reflective of their age and cognitive abilities. This should involve:

• Hospices

• Voluntary Organisations

• Family Centres

• Early Years settings, schools and colleges

• Youth workers

• Social prescribing

• NHS

• Public Health

• Local Authorities

• Parents and carers

• Faith Communities

• Community Groups

Why?

Bereavement is an Adverse Childhood Experience (ACE’s). Trauma and ACE’s in childhood can impact educational attainment, mental health and long term health and life outcomes.

5. Targeted bereavement support for specific groups

Recommendation: The report highlights particular needs amongst:

• Children and young people

• People from ethnic minority communities

• People experiencing multiple disadvantage

• people from inclusion health groups

• veterans

• people experiencing sudden, traumatic or unexpected deaths, particularly traumatic child death or homicide

• people who are socially isolated

• working-age adults balancing bereavement with employment and caring responsibilities

Address barriers and health inequalities in accessing care and support through co-produced services and supported access. Community connection needs to be developed to link into services and provide a bridge and advocacy to support access. The service structure and offer needs to be around this to personalised care and flexibility of support. This should involve:

• Hospices

• Voluntary Organisations

• Family Centres

• Early Years settings, schools and colleges

• Community connectors

• Social prescribing

• Parents and carers

• Faith Communities

• Community Groups

• NHS

• Public Health

• Local Authorities

Why?

Data shows that there are health inequalities in accessing bereavement and mental wellbeing support. With awareness and social stigma as key barriers. Timely personalised support can reduce development of severe mental illness and impact on social and health outcomes.

6. Embed bereavement within emotional wellbeing and prevention strategies

Recommendation: Recognise bereavement as a contributary factor to mental ill health, social isolation, poor health outcomes, suicide risk and wider health inequalities, whilst avoiding the medicalisation of normal grief.

What makes a difference to the individual? The identification of support needs to be part of a whole system approach to ensure timely support and prevention of escalating need. How do we enable parents, carers, friends, schools, colleagues and services to identify need and signpost to appropriate support. This should involve:

• Hospices

• Voluntary Organisations

• Early Years settings, schools and colleges

• Parents and carers

• Faith Communities

• Community Groups

• Community connectors

• Primary care

• NHS

• Public Health

• Local Authorities

7. Equitable Surrey wide integrated, flexible seamless bereavement support

Recommendation: Strengthening integration across Surrey while maintaining the distinct contributions of each approach presents a key opportunity to improve how bereavement-related need is recognised and supported across the system.

Need to recognise grief, loss, bereavement is different for everyone. Grief can be at different timeframes in a person’s life. Subsequent grief and key life events triggers feelings of grief throughout our lives. There will be a whole story of loss in response to this loss.

Key requirements:

• Co-production with communities and people with lived experience

• Single point of access identifying suitable support across integrated services and support.

• Relational approach, not an individual approach

• Bereavement health literacy embedded within society, practitioners, services and organisations

• Community connection and navigators

• Flexibility of offer

• Personalisation of timeframe

Why?

Many services rely heavily on charitable funding, volunteers and short-term funding arrangements, creating fragility within the system. There is a need for integrated, sustainable bereavement provision, workforce and volunteer capacity.

8. Support bereavement friendly workplaces and education settings

Recommendation: Support is needed for colleagues, teachers, practitioners with how common grief is and to talk about it more. When experiencing grief, the person needs trusted people who are there to support, not new people coming into their life. This should involve:

• Education and early years

• Colleges and universities

• Workplaces

• Hospices

• VCFSE

• NHS

• Public health

Why?

Bereavement is often poorly recognised within workplaces despite its significant impact on wellbeing, productivity and retention.

9. Develop a long-term demand and capacity model

Recommendations: Project need to 2040, taking account of demographic change, increasing deaths and changing patterns of support.

To enable this, the system will need improved data entry, data quality and oversight of population need and outcomes. This will enable services to be developed according to population need, targeting support to efficiently utilise resources and horizon scan as to further developments within services and care.

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 End-of-Life care and Bereavement JSNA’s, there is 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 greatest impact as a result of bereavement.

There is unequal access across communities with both social determinants of health and healthcare inequalities impacting access across Surrey.

• People with learning disabilities and autistic people

  People with learning disabilities and autistic people have inequity of access to existing support, with a lack of inclusive support offers.

• Veterans

  Surrey has a high proportion of veterans compared to other counties. Trauma and bereavement is a contributary factor in their experiencing multiple disadvantage upon leaving service. A high proportion of these veterans are from ethnic minority communities, creating further inequity.

• People experiencing multiple disadvantage and inclusion health groups

  People spoke of bereavement being a turning point into multiple disadvantage, with further bereavement causing on-going trauma and mental health needs creating a cyclical impact.

• Cultural and faith-related inequalities

  People from different cultural, ethnic and faith backgrounds may not always find support that reflects their experiences, beliefs or preferences.

• Geographic variation

  Access to bereavement support is variable across Surrey, creating a "postcode lottery" in some areas.

• Digital exclusion

  Increasing use of online support can create additional barriers for some groups.

10.4.3 Where should organisations be thinking differently about services and provision

1. Intersectionality and hidden voices must be recognised

   Support should not treat any protected characteristic, inclusion health group or people experiencing health inequalities as one group. Support should consider all ages, faiths, genders, disability experiences and identity. Train and support professionals and practitioners in practising health literacy and trauma-informed practice.

2. Cultural and religious inclusion in practice

   Culturally responsive care affects whether people feel safe enough to speak honestly and accept support. Train and support professionals and practitioners in being culturally competent.

3. Consideration of social determinants of health

   Housing is healthcare, financial security is healthcare, the practical impacts of bereavement, including financial, housing, employment and social pressures, which often sit alongside emotional wellbeing needs.

4. Practice compassionate curiosity

   Bereavement can present as a physical and wellbeing need, the person may not voice their being bereaved but may present with a range of other related needs. Use observation and compassionate curiosity to assess the situation. Check in with someone. It is not about saying “are you upset?”, but asking about “what is life like?”.

5. Digital exclusion creates barriers

   Increasing reliance on online systems for healthcare, benefits and accessing information and forms create additional barriers. People experiencing homelessness, people experiencing deprivation and displaced people will have limited access to computers or internet.

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

With significant capacity and cost pressures 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.

As the end-of-life data suggests, the number of people dying in Surrey will rise, resulting in an increased number of people who will be bereaved. To enable the system to effectively meet the need within the constraints of funding and resources. Sectors and organisations need to collaborate and work in partnership co-creating and co-delivering with communities, to enable prevention and early identification of need requiring specialist interventions.

• Opportunities for collaborative funding, resource utilisation and delivery of community-based approaches for universal, targeted and specialist bereavement support, between Public Health, health, education, VCSFE and hospices. Such as the implementation of Compassionate Communities and tiered bereavement provision as described by the National Bereavement Alliance.

• 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.

• Where bereavement is linked to other programmes such as frailty, oncology, or complex CYP. Bereavement to be part of streams of funding for related programmes, so that its funding, provision and pathways are complementary rather than stand alone. Consideration of regional, system and organisational funding, including shorter term non-recurrent funding to be reviewed, such as that from NHS England or government.

• 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 perinatal, children and young people’s bereavement services across a larger ICB or regional footprint. Bringing together cross-sector, cross ICB delivery through single point of access to enable efficient use of resources.

• 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] Healthysurrey (n.d.) End of life care | Healthy Surrey. Healthysurrey. Available at: https://www.healthysurrey.org.uk/community-health/end-of-life-care  (Accessed: 25 September 2026).

[2] Grief (2024) www.grief.com. Grief. Available at: http://www.grief.com/  (Accessed: 25 September 2026).

[3] Redican, E., Shevlin, M., Hyland, P., Murphy, J., Duffy, M., & Karatzias, T. (2024). The psychological burden of bereavement in the general population of UK and Ireland. Death Studies, 50(2), 277–285. doi:10.1080/07481187.2024.2420877  

[4] Authors, & Jones, B. (2022). Building an organisational culture of continuous improvement. Retrieved from https://www.health.org.uk/reports-and-analysis/briefings/building-an-organisational-culture-of-continuous-improvement  

[5] UK Government (2024) Deaths by area of usual resident: LSOA, ward and CCG | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/dataset/deaths-by-area-of-usual-resident-lsoa-ward-and-ccg-2y3ly  (Accessed: 25 September 2026).

[6]Cam (2024) A silent epidemic of grief | University of Cambridge. Cam. Available at: https://www.cam.ac.uk/stories/bereavement  (Accessed: 25 September 2026).

[7] Ncmd (2025) Child death data release 2025 | National Child Mortality Database. Ncmd. Available at: https://www.ncmd.info/publications/child-death-review-data-release-2025/  (Accessed: 25 September 2026).

[8] NHS (2023) NHS England » Three year delivery plan for maternity and neonatal services. NHS. Available at: https://www.england.nhs.uk/long-read/three-year-delivery-plan-for-maternity-and-neonatal-services/  (Accessed: 25 September 2026).

[9] NHS (2024) NHS England » Maternity Transformation Programme. NHS. Available at: https://www.england.nhs.uk/mat-transformation/  (Accessed: 25 September 2026).

[10] NHS (n.d.) Maternity related fear, loss and trauma (AFLoaT) : Surrey and Borders Partnership NHS Foundation Trust. NHS. Available at: https://www.sabp.nhs.uk/our-services/mental-health/maternal-mental-health-service  (Accessed: 25 September 2026).

[11] NHS (n.d.) Types of perinatal mental health problems : Surrey and Borders Partnership NHS Foundation Trust. NHS. Available at: https://www.sabp.nhs.uk/our-services/mental-health/perinatal/perinatal-mental-health-problems  (Accessed: 25 September 2026).

[12] Mindworks Surrey (n.d.) Home :: Mindworks Surrey. Mindworks Surrey. Available at: https://www.mindworks-surrey.org/  (Accessed: 25 September 2026).

[13] Momentum Children’s Charity (n.d.) Momentum Children’s Charity Children's Charity. Available at: https://www.momentumcharity.org/  (Accessed: 25 September 2026).

[14] Shootingstar (n.d.) Bereavement Support - Shooting Star Children’s Hospices. Shootingstar. Available at: https://www.shootingstar.org.uk/how-we-help/bereaved-family-zone/bereavement-support-hub/  (Accessed: 25 September 2026).

[15] Childbereavementuk (2022) UK Death Statistics | Child Bereavement UK. Childbereavementuk. Available at: https://www.childbereavementuk.org/death-bereavement-statistics  (Accessed: 25 September 2026).

[16] UK Government (2021) Census 2021: Household Characteristics | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/census-2021/census-2021-household-characteristics/  (Accessed: 25 September 2026).

[17] Cruse (n.d.) Home - Cruse Bereavement Support. Cruse. Available at: https://www.cruse.org.uk/  (Accessed: 25 September 2026).

[18] Victoriaandstuart (n.d.) End Of Life Care Planning | The Victoria And Stuart Project. Victoriaandstuart. Available at: https://www.victoriaandstuart.com/  (Accessed: 25 September 2026).

[19] Pah (n.d.) Bereavement support - Princess Alice Hospice. Pah. Available at: https://www.pah.org.uk/our-care/our-bereavement-support/  (Accessed: 25 September 2026).

[20] Pth (n.d.) Counselling and Bereavement | Phyllis Tuckwell. Pth. Available at: https://www.pth.org.uk/your-care/our-services/counselling-and-bereavement/  (Accessed: 25 September 2026).

[21] Stcatherines (n.d.) Bereavement and Remembrance - St Catherine's Hospice. Stcatherines. Available at: https://www.stcatherines.co.uk/our-care/bereavement-and-remembrance/  (Accessed: 25 September 2026).

[22] Thelucyraynerfoundation (n.d.) Suicide Bereavement Services | The Lucy Rayner Foundation. Thelucyraynerfoundation. Available at: https://thelucyraynerfoundation.com/suicide-bereavement-support-service-surrey/  (Accessed: 25 September 2026).

[23] Connecttosupportsurrey (n.d.) Social prescribing | Connect to Support Surrey. Connecttosupportsurrey. Available at: https://www.connecttosupportsurrey.org.uk/information-and-advice/social-prescribing/  (Accessed: 25 September 2026).

[24] Andysmanclub (n.d.) Find A Support Group - ANDYSMANCLUB. Andysmanclub. Available at: https://andysmanclub.co.uk/groups/  (Accessed: 25 September 2026).

[25] Mentell (n.d.) Mentell – Men, is it time to talk?. Mentell. Available at: https://www.mentell.org.uk/  (Accessed: 25 September 2026).

[26] Homestartsurrey (n.d.) Dad Matters | Home-Start Surrey. Homestartsurrey. Available at: https://homestartsurrey.org/dad-matters/  (Accessed: 25 September 2026).

[27] Url (n.d.) Допомога з оплатою енергії | Help with energy bills. Url. Available at: https://url.uk.m.mimecastprotect.com/s/OuTNC0jlTxonDfwfPzh9tws2?domain=mariecurie.org.uk  (Accessed: 25 September 2026).

[28] Url (n.d.) Information and support | Marie Curie. Url. Available at: https://url.uk.m.mimecastprotect.com/s/DenDCAEJIQ6x3T6i9mhGS6Kl?domain=mariecurie.org.uk  (Accessed: 25 September 2026).

[29] Sands (n.d.) Order memory boxes | Sands. Sands. Available at: https://www.sands.org.uk/professionals/order-memory-boxes  (Accessed: 25 September 2026).

[30] Nih (2025) Sex differences in brain anatomy | National Institutes of Health (NIH). Nih. Available at: https://www.nih.gov/news-events/nih-research-matters/sex-differences-brain-anatomy (Accessed: 25 September 2026).

[31] Journals (2025) Unravelling the Neurobiology of Grief: Insights into Brain and Behaviour–Narrative Review - Nikolaos Statharakos, 2025. Journals. Available at: https://journals.sagepub.com/doi/10.26599/BSA.2025.905001  (Accessed: 25 September 2026).

[32] Sciencedirect (n.d.) Are there gender differences in prolonged grief trajectories? A registry-sampled cohort study - ScienceDirect. Sciencedirect. Available at: https://www.sciencedirect.com/science/article/abs/pii/S0022395620308621  (Accessed: 25 September 2026).

[33] Cambridge (n.d.) An exploration of gender and prolonged grief symptoms using network analysis | Psychological Medicine | Cambridge Core. Cambridge. Available at: https://www.cambridge.org/core/journals/psychological-medicine/article/abs/an-exploration-of-gender-and-prolonged-grief-symptoms-using-network-analysis/F2918C5F8D3F017F5608280F7F4219C8  (Accessed: 25 September 2026).

[34] Sciencedirect (n.d.) The mental health impact of perinatal loss: A systematic review and meta-analysis - ScienceDirect. Sciencedirect. Available at: https://www.sciencedirect.com/science/article/abs/pii/S0165032721011009  (Accessed: 25 September 2026).

[35] Sciencedirect (n.d.) Parents bereaved by infant death: PTSD symptoms up to 18 years after the loss - ScienceDirect. Sciencedirect. Available at: https://www.sciencedirect.com/science/article/abs/pii/S0163834313001886  (Accessed: 25 September 2026).

[36] Bmj (2023) Rising rates of perinatal suicide | The BMJ. Bmj. Available at: https://www.bmj.com/content/381/bmj-2023-075414.full  (Accessed: 25 September 2026).

[37] Pmc (n.d.) Grief in Children and Adolescents: A Developmentally Informed Clinical Review With Illustrative Cases - PMC. Pmc. Available at: https://pmc.ncbi.nlm.nih.gov/articles/PMC12782988/  (Accessed: 25 September 2026).

[38] Childbereavementuk (n.d.) Children's understanding of death at different ages | Child Bereavement UK. Childbereavementuk. Available at: https://www.childbereavementuk.org/childrens-understanding-of-death-at-different-ages  (Accessed: 25 September 2026).

[39] Soetioso, V.B. and Fithriyah, I. (2026) ‘Grief in children and adolescents: A developmentally informed clinical review with illustrative cases’, Journal of the Korean Academy of Child and Adolescent Psychiatry, 37(1), pp. 44–50. Available at: https://doi.org/10.5765/jkacap.250036  (Accessed: 12 October 2026).

[40] UK Government (n.d.) Annex 1 - Thematic Review of Adolescent Suicide.pdf. UK Government. Available at: https://mycouncil.surreycc.gov.uk/documents/s69201/Annex 1-Thematic-Review-of-Adolescent-Suicide.pdf  (Accessed: 25 September 2026).

[41]Tandfonline (2024) Full article: The psychological burden of bereavement in the general population of UK and Ireland. Tandfonline. Available at: https://www.tandfonline.com/doi/full/10.1080/07481187.2024.2420877  (Accessed: 25 September 2026).

[42] Health (2024) Grieving? Don’t overlook potential side effects - Harvard Health. Health. Available at: https://www.health.harvard.edu/blog/grieving-dont-overlook-potential-side-effects-2019010415722  (Accessed: 25 September 2026).

[43] Journals (2024) The Relationship Between Adult Attachment and Complicated Grief: A Systematic Review - Victoria Russ, Lusia Stopa, Katy Sivyer, Jane Hazeldine, Tess Maguire, 2024. Journals. Available at: https://journals.sagepub.com/doi/10.1177/00302228221083110  (Accessed: 25 September 2026).

[44] Bmj (2024) Supporting families after the unexpected death of a child | The BMJ. Bmj. Available at: https://www.bmj.com/content/389/bmj-2024-082885   (Accessed: 25 September 2026).

[45] Godman, H. (2019) ‘Grieving? Don’t overlook potential side effects’, Harvard Health Publishing, 4 January. Available at: https://www.health.harvard.edu/blog/grieving-dont-overlook-potential-side-effects-2019010415722  (Accessed: 12 October 2026).

[46] Sciencedirect (n.d.) The relationship between substance misuse and complicated grief: A systematic review - ScienceDirect. Sciencedirect. Available at: https://www.sciencedirect.com/science/article/pii/S0740547218305749  (Accessed: 25 September 2026).

[47] NHS (n.d.) PowerPoint Presentation. NHS. Available at: https://www.sad.scot.nhs.uk/media/16965/bereavement-experiences-of-older-people.pdf  (Accessed: 25 September 2026).

[48] Carersuk (n.d.) former-carers-report_final.pdf. Carersuk. Available at: https://www.carersuk.org/media/wcuhsnts/former-carers-report_final.pdf  (Accessed: 25 September 2026).

[49] UK Government (2023) Key Neighbourhoods | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/key-neighbourhoods/  (Accessed: 25 September 2026).

[50] Surreyscp (2014) Sudden-Unexpected-Death-in-Infancy-a-ten-year-thematic-review-of-deaths-of-babies-normally-resident-in-Surrey-2014-2024.pdf. Surreyscp. 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: 25 September 2026).

[51] Surreyscp (2016) Child-Death-Review-Partnership-Neurodisability-Thematic-Review.pdf. Surreyscp. Available at: https://www.surreyscp.org.uk/wp-content/uploads/2021/06/Child-Death-Review-Partnership-Neurodisability-Thematic-Review.pdf  (Accessed: 25 September 2026).

[52] Researchgate (n.d.) Disadvantaged and disenfranchised in bereavement: A scoping review of social and structural inequity following expected death | Request PDF. Researchgate. Available at: https://www.researchgate.net/publication/336481373_Disadvantaged_and_disenfranchised_in_bereavement_A_scoping_review_of_social_and_structural_inequity_following_expected_death  (Accessed: 25 September 2026).

[53] Oxfordbrc (n.d.) Social disconnection worsens mental health after a loss | NIHR Biomedical Research Centre: Oxford. Oxfordbrc. Available at: https://oxfordbrc.nihr.ac.uk/social-disconnection-worsens-mental-health-after-a-loss/  (Accessed: 25 September 2026).

[54] Smef (2021) Surrey Minority Ethnic Forum Surrey Minority Ethnic Forum. Smef. Available at: https://www.smef.org.uk/  (Accessed: 25 September 2026).

[55] Bristol (2025) Selman Bereavement Systemic reform and targeted action needed to better support Black communities.pdf. Bristol. Available at: Bereavement: Systemic reform and targeted action needed to better support Black communities | PolicyBristol | University of Bristol (Accessed: 25 September 2026).

[56] Smef (n.d.) Reports and Accounts — Surrey Minority Ethnic Forum. Smef. Available at: https://www.smef.org.uk/reports-and-accounts  (Accessed: 25 September 2026).

[57] Tandfonline (2025) Full article: Mourning rituals impact grief outcomes in East and Southeast Asia: A mixed-methods review. Tandfonline. Available at: https://www.tandfonline.com/doi/full/10.1080/07481187.2025.2561079  (Accessed: 25 September 2026).

[58] Researchgate (n.d.) (PDF) The Last Journey: The Funeral Rites and Cultural Needs of Gypsies and Travellers. Researchgate. Available at: https://www.researchgate.net/publication/367167822_The_Last_Journey_The_Funeral_Rites_and_Cultural_Needs_of_Gypsies_and_Travellers  (Accessed: 25 September 2026).

[59] UK Government (2026) People with learning disabilities 2026 update | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/jsna/people-with-learning-disabilities-full/  (Accessed: 25 September 2026).

[60] UK Government (n.d.) JSNA Multiple Disadvantage | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/jsna/jsna-multiple-disadvantage/  (Accessed: 25 September 2026).

[61] Surrey-i (n.d.) ‘Facts & figures about disability in Surrey’. Available at: https://www.surreyi.gov.uk/download/vq1d4/vgb/Disability%20Infographic.pdf  (Accessed: 12 October 2026).

[62] Journals (2026) Beyond Silence: A Scoping Review of Provided Support for Grieving Children With Intellectual Disabilities or Autism Spectrum Disorder - Maria Bonin, Lilly Augustine, Qi Meng, 2026. Journals. Available at: https://journals.sagepub.com/doi/10.1177/00302228231226343  (Accessed: 25 September 2026).

[63] Autism (n.d.) Bereavement - a guide for autistic adults. Autism. Available at: https://www.autism.org.uk/advice-and-guidance/mental-health/bereavement/autistic-adults  (Accessed: 25 September 2026).

[64] Mariecurie (n.d.) Supporting a bereaved adult with a learning disability | Marie Curie. Mariecurie. Available at: https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/bereaved-learning-disability  (Accessed: 25 September 2026).

[65] Deaflink (2018) End of life research. Deaflink. Available at: End of life research (Accessed: 25 September 2026).

[66] Journals (2022) Negotiating bereavement and loss: Influencing persistence and desistance from crime - Natalie Rutter, 2022. Journals. Available at: https://journals.sagepub.com/doi/10.1177/17488958211016848  (Accessed: 25 September 2026).

[67] Parisi, A., Sharma, A., Howard, M.O. and Blank Wilson, A. (2019) ‘The relationship between substance misuse and complicated grief: A systematic review’, Journal of Substance Abuse Treatment, 103, pp. 43–57. Available at: https://www.sciencedirect.com/science/article/pii/S0740547218305749  (Accessed: 25 September 2026).

[68] UK Government (2022) HNA Prisons | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/dataset/hna-prisons-2zg5q  (Accessed: 25 September 2026).

[69] Bc Cpc (2024) Rapid-Review-Full-English-Version-Final.pdf. Bc Cpc. Available at: https://www.bc-cpc.ca/wp-content/uploads/2024/09/Rapid-Review-Full-English-Version-Final.pdf  (Accessed: 25 September 2026).

[70] Link (n.d.) Article 10.1007 s10560 025 01055 5. Link. Available at: https://link.springer.com/article/10.1007/s10560-025-01055-5  (Accessed: 25 September 2026).

[71] UK Government (2021) 2021 Census: Sexual Orientation | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/census-2021/2021-census-sexual-orientation/  (Accessed: 25 September 2026).

[72] Cambridge (n.d.) Does the impact of bereavement vary between same and different gender partnerships? A representative national, cross-sectional study | Psychological Medicine | Cambridge Core. Cambridge. Available at: https://www.cambridge.org/core/journals/psychological-medicine/article/does-the-impact-of-bereavement-vary-between-same-and-different-gender-partnerships-a-representative-national-crosssectional-study/CB27A63ECFCB4B7DF8A1AE9B70FA3AAE  (Accessed: 25 September 2026).

[73] Hub (2023) FINAL LGBTQ Report Design Final. Hub. Available at: https://hub.supportaftersuicide.org.uk/wp-content/uploads/2023/07/SASP-LGBTQ-Suicide-Bereavement-Report.pdf  (Accessed: 25 September 2026).

[74] UK Government (2021) Census 2021: Religion | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/census-2021/census-2021-religion/  (Accessed: 25 September 2026).

[75] UK Government (2011) Faith at end of life: A resource for professionals, providers and commissioners working in communities. UK Government. 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: 25 September 2026).

[76] Childbereavementuk (n.d.) Faiths, beliefs, cultures and communities | Child Bereavement UK. Childbereavementuk. Available at: https://www.childbereavementuk.org/pages/faqs/category/faiths-beliefs-cultures-and-communities  (Accessed: 25 September 2026).

[77] UK Government (n.d.) Armed Forces Community | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/jsna/armed-forces-community/  (Accessed: 25 September 2026).

[78] Veteranswelfaregroup (2025) BD-Bereavement.pdf. Veteranswelfaregroup. Available at: https://veteranswelfaregroup.co.uk/wp-content/uploads/2025/08/BD-Bereavement.pdf  (Accessed: 25 September 2026).

[79] Link (2025) Article 10.1007 s11126 021 09883 1. Link. Available at: https://link.springer.com/article/10.1007/s11126-021-09883-1  (Accessed: 25 September 2026).

[80] Berghahnjournals (2025) UK Military Veterans’ Difficulties in Reintegration and the Road to Imprisonment in: Conflict and Society Volume 11 Issue 1 (2025). Berghahnjournals. Available at: https://www.berghahnjournals.com/view/journals/conflict-and-society/11/1/arcs110103.xml  (Accessed: 25 September 2026).

[81] Packham, D.D. (2025) ‘UK military veterans’ difficulties in reintegration and the road to imprisonment’, Conflict and Society: Advances in Research, 11(1), pp. 24–44. Available at: https://doi.org/10.3167/arcs.2025.110103  (Accessed: 12 October 2026).

[82] Compassionate Sheffield (n.d.) Compassionate Sheffield. Compassionate Sheffield. Available at: https://www.compassionate-sheffield.co.uk/  (Accessed: 25 September 2026).

[83] Healthwatchsurrey (n.d.) The-Commission-on-Palliative-and-End-of-Life-Care-–-March-25.pdf. Healthwatchsurrey. Available at: https://www.healthwatchsurrey.co.uk/sites/healthwatchsurrey.co.uk/files/The-Commission-on-Palliative-and-End-of-Life-Care-%E2%80%93-March-25.pdf  (Accessed: 25 September 2026).

[84] Hub (n.d.) Understanding Gypsy, Roma and Traveller communities: A Support Guide – SASP. Hub. Available at: https://hub.supportaftersuicide.org.uk/resource/understanding-gypsy-roma-and-traveller-communities-a-support-guide/  (Accessed: 25 September 2026).

[85] Luminus Cic (2023) Reducing-Digital-Inequalities-in-Maternity-Services-for-Refugees-Asylum-Seeking-women-FINAL-1-1.pdf. Luminus Cic. Available at: https://luminus-cic.uk/wp-content/uploads/2023/05/Reducing-Digital-Inequalities-in-Maternity-Services-for-Refugees-Asylum-Seeking-women-FINAL-1-1.pdf  (Accessed: 25 September 2026).

[86] Department of Health and Social Care. (2025). 10 Year Health Plan for England: fit for the future. Retrieved from https://www.gov.uk/government/publications/10-year-health-plan-for-england-fit-for-the-future  

[87] (N.d.-c). Retrieved from https://www.england.nhs.uk/publication/service-specifications-for-palliative-and-end-of-life-care-adults/  

[88] (N.d.-b). Retrieved from https://www.england.nhs.uk/publication/service-specifications-for-palliative-and-end-of-life-care-children-and-young-people-cyp/  

[89] NHS (n.d.) NHS England » Ambitions for palliative and end of life care. NHS. Available at: https://www.england.nhs.uk/eolc/ambitions/  (Accessed: 25 September 2026).

[90] NHS (n.d.) NHS England » Palliative and end of life care: Statutory guidance for integrated care boards (ICBs). NHS. Available at: https://www.england.nhs.uk/publication/palliative-and-end-of-life-care-statutory-guidance-for-integrated-care-boards-icbs/  (Accessed: 25 September 2026).

[91] Nbcpathway (2024) NBCP_Working_Together_Resource_Toolkit.pdf. Nbcpathway. Available at: https://www.nbcpathway.org.uk/wp-content/uploads/2024/02/NBCP_Working_Together_Resource_Toolkit.pdf  (Accessed: 25 September 2026).

[92] NHS (2018) NHS England » Dying well in custody charter and self assessment tool. NHS. Available at: https://www.england.nhs.uk/publication/dying-well-in-custody-charter-and-self-assessment-tool/  (Accessed: 25 September 2026).

[93] Nationalbereavementalliance (n.d.) Support with bereavement – National Bereavement Alliance. Nationalbereavementalliance. Available at: https://nationalbereavementalliance.org.uk/support/  (Accessed: 25 September 2026).

[94] Questions Statements (2026) Written statements - Written questions, answers and statements - UK Parliament. Questions Statements. Available at: https://questions-statements.parliament.uk/written-statements/detail/2025-11-24/hcws1087  (Accessed: 25 September 2026).

[95] UK Government (2020) Palliative & End of Life Care Strategy 2020-2025. UK Government. Available at: https://mycouncil.surreycc.gov.uk/documents/s77285/Item 7 - PEoLC-Strategy-Summary-Annex 2.pdf  (Accessed: 25 September 2026).

[96] Healthysurrey (2026) Surrey Health and Wellbeing Strategy - update 2026. Available at: Surrey Health and Well-Being Strategy - update 2026 | Healthy Surrey (Accessed: 25 September 2026).

[97] NHS (2023) B1674-specialist-palliative-and-end-of-life-care-services-adult-service-specification.pdf. NHS. Available at: https://www.england.nhs.uk/wp-content/uploads/2023/01/B1674-specialist-palliative-and-end-of-life-care-services-adult-service-specification.pdf  (Accessed: 25 September 2026).

[98] NHS (2023) B1675-specialist-palliative-and-end-of-life-care-services-cyp-service-spec.pdf.pdf. NHS. Available at: https://www.england.nhs.uk/wp-content/uploads/2023/01/B1675-specialist-palliative-and-end-of-life-care-services-cyp-service-spec.pdf.pdf  (Accessed: 25 September 2026).

[99] Nice (n.d.) Quality statement 5: Support for grief and loss for parents or carers | End of life care for infants, children and young people | Quality standards | NICE. Nice. Available at: https://www.nice.org.uk/guidance/qs160/chapter/Quality-statement-5-Support-for-grief-and-loss-for-parents-or-carers  (Accessed: 25 September 2026).

[100] Hospiceuk Files Prod (2024) Hospice Strategy Document 22April2024_0.pdf. Hospiceuk Files Prod. Available at: https://hospiceuk-files-prod.s3.eu-west-2.amazonaws.com/s3fs-public/2024-04/Hospice Strategy Document 22April2024_0.pdf  (Accessed: 25 September 2026).

[101] Mariecurie (n.d.) bereavement-is-everyone’s-business-full-report. Mariecurie. Available at: https://www.mariecurie.org.uk/document/bereavement-is-everyones-business-full-report  (Accessed: 25 September 2026).

[102] UK Government (2023) Suicide prevention strategy for England: 2023 to 2028. UK Government. Available at: https://www.gov.uk/government/publications/suicide-prevention-strategy-for-england-2023-to-2028  (Accessed: 25 September 2026).

[104] Ukc Word Edit (2010) We wordeditorframe. Ukc Word Edit. Available at: https://ukc-word-edit.officeapps.live.com/we/wordeditorframe.aspx?ui=en%2DGB&rs=en%2DUS&wopisrc=https%3A%2F%2Forbispartnerships-my.sharepoint.com%2Fpersonal%2Fannette_engmann_surreycc_gov_uk%2F_vti_bin%2Fwopi.ashx%2Ffiles%2Fc6c486f3eb084acbb1edcd4537371a47&wdlor=c63537340%2dDFD6%2d4743%2d9A4B%2dAEDAA43E2E66&wdenableroaming=1&mscc=1&wdodb=1&hid=D92D47A0-F0CE-4000-36A8-0698B3EB549F&wdorigin=Other&jsapi=1&jsapiver=v1&newsession=1&corrid=4d1385c6-7068-4746-bedf-4e19dccea4be&usid=4d1385c6-7068-4746-bedf-4e19dccea4be&sftc=1&cac=1&mtf=1&sfp=1&instantedit=1&wopicomplete=1&wdredirectionreason=Unified_SingleFlush&rct=Medium&ctp=LeastProtected  (Accessed: 25 September 2026).

[105] Healthysurrey (2025) 2025- 2030 Surrey suicide prevention strategy. Healthysurrey. Available at: https://www.healthysurrey.org.uk/mental-wellbeing/professionals/suicide-prevention-strategy  (Accessed: 25 September 2026).

[106] Centreformentalhealth (n.d.) The economic and social costs of mental ill health - Centre for Mental Health. Centreformentalhealth. Available at: https://www.centreformentalhealth.org.uk/publications/the-economic-and-social-costs-of-mental-ill-health/  (Accessed: 25 September 2026).

[107] Res (n.d.) ECONOMICS OF GRIEF: New evidence of the impact on parents of losing a child - Royal Economic Society. Res. Available at: https://res.org.uk/mediabriefing/economics-of-grief-new-evidence-of-the-impact-on-parents-of-losing-a-child/  (Accessed: 25 September 2026).

[108] Samaritans (2022) The economic cost of suicide in the UK. Samaritans. Available at: https://www.samaritans.org/about-samaritans/research-policy/the-economic-cost-of-suicide/  (Accessed: 25 September 2026).

[109] Nationalbereavementalliance (n.d.) A guide to commissioning bereavement support in England – National Bereavement Alliance. Nationalbereavementalliance. Available at: https://nationalbereavementalliance.org.uk/ourpublications/commissioning/  (Accessed: 25 September 2026).

[110] Nationalbereavementalliance (2023) 5-CCBS-What-should-be-available-in-each-local-area.pdf. Nationalbereavementalliance. Available at: https://nationalbereavementalliance.org.uk/wp-content/uploads/2023/05/5-CCBS-What-should-be-available-in-each-local-area.pdf  (Accessed: 25 September 2026).

[111] (N.d.-a). Retrieved from https://www.england.nhs.uk/publication/nhs-strategic-commissioning-framework/  

[112] Office for Health Improvement and Disparities. (2024). Excess mortality in England and English regions: March 2020 to December 2023. Retrieved from https://www.gov.uk/government/statistics/excess-mortality-in-england-and-english-regions  

[113] Committees (n.d.) CMH0151 - Evidence on Children and young people's mental health—the role of education. Committees. Available at: https://committees.parliament.uk/writtenevidence/76937/pdf/  (Accessed: 25 September 2026).

[114] Gypsy Traveller (2017) Cemetery-Culture-and-Traditions_v2.pdf. Gypsy Traveller. Available at: https://www.gypsy-traveller.org/wp-content/uploads/2017/03/Cemetery-Culture-and-Traditions_v2.pdf  (Accessed: 25 September 2026).

[115] Healthysurrey (n.d.) Surrey Healthy Schools | Healthy Surrey. Healthysurrey. Available at: https://www.healthysurrey.org.uk/professionals/healthy-schools  (Accessed: 25 September 2026).

[116] Shootingstar (n.d.) Bridging the gap in perinatal palliative care - Shooting Star Children’s Hospices. Shootingstar. Available at: https://www.shootingstar.org.uk/news/bridging-the-gap-in-perinatal-palliative-care/  (Accessed: 25 September 2026).

[117] UK Government (2021) Census 2021: Ethnic Group | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/census-2021/ethnic-group/  (Accessed: 25 September 2026).

[118] UK Government (2024) Population Estimates | Surrey-i. UK Government. Available at: https://www.surreyi.gov.uk/dataset/population-estimates-em0ym  (Accessed: 25 September 2026).

Appendix 1: Momentum Children’s Charity Echoes Family Feedback Report (2026)

Executive Summary

In January 2026, 18 Echoes families (38%) of those invited to participate, shared their experiences in our annual survey. They told us honestly what life has been like since their child died, and the difference Momentum Children’s Charity’s support has made.

Despite high levels of emotional strain, 100% of parents/carers and siblings reported that their emotional wellbeing improved with Momentum Children’s Charity’s support. Many spoke about feeling overwhelmed, exhausted and unsure how to manage daily life while supporting surviving children.

Alongside this, families told us how Momentum Children’s Charity’s support helped them feel less alone. 100% of parents/carers and 100% of siblings said their emotional wellbeing improved with our support. Parents described the importance of having someone who checked in regularly, listened without judgement and remembered them on difficult days. Respite breaks, peer events, therapies and the small touches — like gifts on key dates — gave families moments of calm and connection during an incredibly painful time.

Families consistently described Momentum Children’s Charity’s support as caring, personal and timely — the kind of steady presence that helped them cope with the hardest moments of bereavement.

About The Survey

Survey conducted January 2026

Participants 18 families (38%) of those invited to participate.

The Need

How Families Are Feeling

Moderate to severe impact on emotional health and wellbeing

• 94% parents/carers

• 67% siblings

Parents described ongoing sadness, fear, loneliness and exhaustion after the death of their child. Many said their emotional wellbeing remained fragile, affecting decision‑making, confidence and their ability to keep up with everyday life.

“I'm only just coming out of deep shock four years later.”

“I was single when my son passed… It has been financially challenging… and emotionally too.”

“We often don’t share what is truly going on.”

Siblings showed signs of anxiety, confusion and emotional overwhelm, often expressed through behaviour rather than words.

“He was shocked and worried… sad and devastated.”

Finding It Hard to Take Part in Everyday Activities

Moderate to severe impact on social and leisure activities

• 78% parents/carers

• 47% siblings

Many parents stepped back from social activities after their child died. Some lacked the energy, while others found being around people emotionally overwhelming or felt out of place in groups where their grief wasn’t understood.

“I was shocked and devastated… everything felt too much.”

Siblings withdrew from hobbies, clubs and friendships they once enjoyed. Parents told us their children became quieter or more anxious in social settings, and some were reluctant to join in activities they used to love.

“Everything felt too much.”

Siblings felt “different” from their peers, unsure how to explain their loss or how others might respond.

Connections With Others Become More Difficult

Moderate to severe impact on peer relationships

• 67% parents/carers

• 33% siblings

Parents described reduced emotional capacity for maintaining friendships, difficulties communicating within the family, and feeling less connected to others.

“I often felt isolated. Just being around others was hard.”

Siblings struggled with friendships — finding it harder to relate to peers who hadn’t experienced loss or feeling unsure how to talk about their brother or sister. Some became more anxious or clingier with parents, while others withdrew in order not to “make things worse”.

Practical Circumstances Become Increasingly Hard to Manage for 72% of parents

Parents told us that daily tasks — work, finances, routines and household responsibilities — felt significantly harder to manage after their child died.

“…15 mortgage increases after my son passed meant I was forced to sell the house with debts.”

Education Can Become Harder to Manage

27% of siblings experience moderate to severe educational difficulty.

Families told us that some siblings found school harder after their brother or sister died. Parents spoke about difficulties concentrating, changes in attendance, and a loss of confidence in learning. For some children, these challenges emerged gradually.

Why Families Need Professional Emotional Support

Parents explained that strong emotions could surface unexpectedly and were hard to manage alongside daily responsibilities.

“I'm only just coming out of deep shock four years later.”

For some siblings, the emotional load was visible even when they struggled to articulate it:

“He couldn’t put it into words — the feelings were there but he didn’t know how to say them.”

Our Impact

Helping Families Feel Supported Emotionally and Less Alone

With our support emotional and emotional wellbeing improved for:

• 100% parents/carers

• 100% siblings

Parents told us the consistent contact — someone checking in regularly, understanding their child’s story, and noticing when things became harder — helped them feel less alone and more able to manage day‑to‑day emotions.

“Being checked on makes it feel like we aren’t alone and are actually part of a community.”

“Vanessa seems to know when to call.”

“Talking to someone who understands has helped me push through.” 

“Walking and talking… helped me break down some things that felt big. I left feeling encouraged and hopeful.”

Giving Families the Space to Reflect and Breathe

With our support families reported feeling more able to take part in social and leisure activities again

• 100% parents/carers

• 100% siblings

Families described events, meet‑ups and activities as moments that created breathing space, connection and time with others who understood.

 “Meeting with other parents that have lost a child has helped a lot.”

“The evenings and craft evenings have been fun — getting me out of being home alone is good.”

Parents shared how valuable it was for their children to be with peers who had also lost a brother or sister.

“Meeting other children that have lost a sibling is good… it really helps.”

Parents repeatedly described respite as one of the most significant parts of their support — offering quiet, calm spaces to reflect, breathe and reconnect as a family.

“The cabin trip was exactly what we needed — a quiet space to reflect.”

“It was a very quiet and reflective place to think about my son — exactly what I needed.”

“We made memories on the riverboat… it meant so much to us.”

Professional Emotional Support Helping Families Begin to Process Their Grief

Families told us that counselling, creative therapies and emotional support sessions gave them space to make sense of overwhelming feelings. Helping to improve access to professional emotional support for:

• 92% parents/carers

• 88% siblings

Parents described how therapy gave them space to talk openly and understand grief in a way that felt manageable.

“Therapy helped me break down things that felt big. I left feeling encouraged and hopeful.”

“…It made me feel heard, understood, and supported.”

For siblings, therapy helped them find ways to express emotions.  Parents noticed that sessions helped their children feel calmer, less anxious and more able to cope with day‑to‑day life.

“Helped my children especially Reuben process his grief”.

Most families told us they would not have accessed counselling and creative therapy if Momentum Children’s Charity had not offered it. Parents said they would not have known where to go or would not have felt able to seek help at all.

Helping Manage the Day to Day

Practical pressures were eased for 100% of parents who accessed our Social Work Support service.

Families described how practical guidance, advocacy and gentle check‑ins helped them manage essential tasks and stabilise everyday life.

“Momentum Children’s Charity has supported me, helping me with my financial situation and housing needs.”

Most families told us they would not have received this kind of practical guidance or advocacy elsewhere if Momentum Children’s Charity hadn’t offered it. Parents said they wouldn’t have known who to turn to for support.

Knowing You’re Being Thought Of

Families told us that the small, thoughtful gestures they received — a gift on a hard day, a message on a key date, a Santa visit, or a parcel arriving when things felt too much — made a real difference.

“It’s so lovely receiving these gifts — especially at difficult times — and knowing you’re being thought of. Key dates are remembered.”

“It lifted me on a horrible day.”

The Biggest Difference Momentum Children’s Charity Has Made

“They continually help in any way.”

“Knowing that there is someone supportive that I can get in touch with and who is so supportive.”

“Staying in your cabins. London Zoo!!”

“Creating James’ quilt/blanket. It’s a hug from James and goes wherever we travel.”

“After my daughter’s death, Momentum Children’s Charity were one of the few non-judgemental services; others treated us like criminals while her death was investigated — Momentum Children’s Charity did not.”

“When we managed to take our son away to one of the cabins during a break in his treatment. We made so many wonderful memories that we will never forget.”

“After we lost Rory, we were able to stay in the cabin. We had just gone through six weeks of emotional hell, and this was our first place to go without Rory and before he was buried — and this helped us so much.”

“The first river cruise we did, where we invited James’ childminders along (who were also grieving) — it gave us space to reflect and bring us together as it was hard to talk about.”

“Vanessa seems to call exactly when I am at breaking point.”

“The WhatsApp message saying Amy was thinking of us in the couple of days after the funeral and wake.”

How Families Describe Momentum Children’s Charity’s Overall Support

“Amazing support throughout my child's illness and beyond. Just helps having something constant.”

“Very special, unique and personal.”

“So far the contact has been positively supportive and non‑intrusive — friendly, approachable and knowledgeable.”

“It’s been amazing, loving and kind. Everyone is filled with compassion and love.”

“Invaluable. Momentum Children’s Charity has provided our family with so many wonderful experiences during our son’s treatment and after he passed away. Always knowing there is someone there to talk to if we need to is incredibly reassuring.”

“Amazing and couldn’t get through the days without them.”

“It’s been amazing, loving and kind. Everyone is filled with compassion and love, truly grateful.”

Conclusion

Our Momentum Children’s Charity Echoes families have shared their honest reflections about life after their child died. Their feedback shows that bereavement continues to affect every part of family life — emotionally, socially and practically.

Families also told us that Momentum Children’s Charity made a meaningful difference. The support they received helped them feel less alone and better able to cope on difficult days. Whether through regular check‑ins, therapies, respite, practical guidance or small thoughtful gestures, families described the support as caring, consistent and personal.

This feedback will help us continue shaping our Echoes service – supporting them through one of the hardest experiences any family can face.

NB All quotes used in this document have consent to be used by Momentum Children’s Charity.

Appendix 2: Hospice Data

Shooting Star Children’s Hospices Bereavement Data

Phyllis Tuckwell Bereavement Support Data

Appendix 3: Jigsaw Quantitative Referral Data

Appendix 4: Surrey Minority Ethnic Forum Report

1. Purpose

This short report summarises evidence from SMEF reports to support the focus groups with people from ethnic minority communities in Surrey. The evidence is drawn from mental health, maternal and perinatal health, autism/disability support, wider community health and peer research. It is used here to identify what people say helps or prevents access to mental health, care and support services, with specific implications for psychological, psychosocial and bereavement support linked to cancer, palliative and end of life care.

2. Source reports reviewed

3. Key extracted data at a glance

4. What ethnic minority communities said about accessing services

4.1 Health and wellbeing are holistic

Speaking for Ourselves strengthens the existing evidence by showing that many participants understood health and wellbeing holistically. People spoke about physical, mental, emotional, spiritual, cultural and social wellbeing together, not as separate issues. Faith, family, community connection, access to nature, safe spaces and a sense of belonging were described as protective factors, while housing insecurity, financial stress, transport issues and social isolation reduced wellbeing.

Bereavement support should not be framed only as a clinical intervention. Participants affected by cancer, life-limiting conditions, palliative care or bereavement may need support that recognises family responsibilities, faith, cultural practices, spiritual distress, practical hardship, loneliness and the wider pressures that shape coping.

4.2 Awareness and signposting are still major barriers

A consistent finding across the reports is that people often do not know what support exists, how to access it, or whether it is meant for them. Speaking for Ourselves found that most participants were familiar with basic NHS services such as GP practices, pharmacies and A&E, but had limited awareness of preventive services including mental health support, sexual health clinics and health checks. This echoes earlier SMEF/IMHN evidence about low knowledge of support beyond the most visible services.

People may not identify distress, fear, grief or loneliness as something services can support, may not know that support exists, or may not know whether hospices, cancer teams or community services are for them.

4.3 Trust, confidentiality and fear of judgement shape access

Participants across the reports repeatedly described trust as central to whether they would disclose difficulties. ACCESS identified fear of judgement and fear of statutory involvement, while Speaking for Ourselves found that stigma, cultural insecurity and previous experiences of not being understood could discourage disclosure. Some participants described delaying care because they did not want to be a burden or make trouble.

The reports suggest that messages about services need to explicitly state that support is confidential, free where relevant, voluntary, non-judgemental and separate from gossip or informal community networks. Where family members are asked to translate, confidentiality can be undermined and people may not disclose distress, abuse, grief or fear.

4.4 Culture, faith, language and stigma affect how people talk about distress

The evidence shows that people from ethnic minority communities may describe distress through cultural, religious, family or practical language rather than clinical terms. Speaking for Ourselves found that faith and culture can support self-care and resilience, but stigma around mental health, sexual health and gender roles can also discourage people from seeking help. Participants wanted easier language, visual materials, translated information and communication through channels they already use, including WhatsApp and community networks.

Assuming that everyone uses terms such as psychological support, psychosocial support or bereavement counselling should be avoided. It may be more meaningful to ask about coping, worry, sadness, grief, family pressure, loneliness, spiritual concerns, fear and support after loss.

4.5 Services can feel generic, impersonal or not culturally responsive

Participants described services that felt “one-size-fits-all”, rushed or not culturally aware. Speaking for Ourselves included accounts of people feeling dismissed, not listened to, or not checked for understanding. It also highlighted experiences of discrimination or dismissal among Black British, Muslim and neurodivergent participants, and women from South Asian backgrounds reporting that they were not always taken seriously.

Care linked to palliative care and bereavement involves sensitive conversations about diagnosis, prognosis, pain, family, death, grief and spiritual beliefs. Culturally responsive care is not an optional extra: it affects whether people feel safe enough to speak honestly and accept support.

4.6 Practical barriers interact with emotional and cultural barriers

The reports identified practical access issues including transport, digital exclusion, poor signposting, language needs, perceived cost, caring responsibilities, childcare, inaccessible locations and unfamiliar systems. Speaking for Ourselves adds stronger evidence on wider determinants, showing that housing insecurity, income, employment, feeling safe, transport and social connection all shape health and service access.

These barriers interact with emotional and cultural barriers. For example, a person who is grieving may also be caring for family members, have limited English, feel unsure about confidentiality, lack transport, or be unable to use online booking systems. Focus groups and future services should therefore build in travel reimbursement, accessible venues, interpretation, translated and easy-read materials, non-digital routes and clear information about cost from the outset.

4.7 Intersectionality and hidden voices must be recognised

Speaking for Ourselves emphasises that ethnicity is only one part of people’s experience. Barriers differ by gender, age, migration status, faith, disability, language, poverty and caring responsibilities. Women, elders, refugees, asylum seekers, disabled people, neurodivergent people and those with low literacy or digital access can face additional layers of exclusion. Spectrum Support and Baby Steps reinforce this by showing how ethnicity intersects with autism, caring, pregnancy, parenting, social isolation and mental health.

Support should not treat ethnic minority communities as one group. Support should consider different ages, genders, faiths, languages, caring roles, disability experiences and migration backgrounds wherever possible.

4.8 Community-based and relationship-based support are key enablers

Across the reports, trusted community spaces were consistently described as more approachable than formal services. Peer groups, one-to-one listening, warm handovers, community champions, faith and community leaders, and WhatsApp-based communication all helped people feel safer and more informed. Baby Steps shows the value of peer-support and one-to-one listening; Spectrum Support shows how community-based networks reduce isolation and stigma; Speaking for Ourselves shows how peer research can shift engagement from consultation to collaboration.

The questions to ask service-users should not only be around what services people need, but also where, how and through whom support should be offered. Community-based routes should be seen as part of the access pathway, not only as recruitment channels.

5. Recommendations for partners

Use trusted community routes for access and support: Use SMEF networks, community groups, faith venues and trusted community settings for information and support. Do not rely only on standard NHS communication channels.

Use plain, holistic and culturally sensitive language: Consider using terms such as wellbeing, coping, emotional support, family support, spiritual support and grief support, alongside clinical terms such as psychological support.

Make confidentiality, cost and purpose explicit: All signposting, invitations and service information should clearly state whether support is free, confidential, voluntary and not linked to immigration, benefits or statutory intervention.

Provide multiple access routes: Offer transport reimbursement, interpretation, translated and easy-read information, phone routes, drop-ins, non-digital booking and accessible venues. Avoid assuming that online-only engagement is sufficient.

Use professional interpreters and protect privacy: Do not assume family members can translate sensitive discussions. Professional interpretation and translated materials are important for safety, dignity and informed consent. Easy read options can be easily and better translated by the online translations services/apps.

Design for cultural safety, not just availability: Review whether services feel welcoming to ethnic minority communities, including representation, location, facilitation, family involvement, faith and spiritual needs, and understanding of racism and discrimination.

Recognise wider determinants of health: Holistic support is necessary. Ask about transport, housing, income, employment, caring responsibilities, social isolation and feeling safe, as these shape whether people can access care and support.

Develop warm handovers and community navigation: People may need support to move from community conversations into formal services. Community navigators, link workers or trained peer-supporters could support this bridge.

Embed peer research and co-production: Treat lived experience as valid evidence. Build peer research, community-led analysis and “you said, we did” feedback loops into service planning, not just one-off consultation.

Train and support professionals: Professionals should receive cultural humility, anti-racism, trauma-informed and bereavement-sensitive training, including how culture, faith, language and family roles shape communication about illness, death and grief.

Collect and use equality data meaningfully: Monitor access and outcomes by ethnicity, language, age, gender, disability, caring role, deprivation and migration-related factors where appropriate, so gaps can be identified and acted on.

6. Conclusion

The SMEF evidence base shows that ethnic minority communities in Surrey often face layered barriers when accessing care and support services. These include low awareness, stigma, language and digital exclusion, lack of trust, fear of judgement, practical access issues, perceived cost, discrimination, services that feel generic or culturally unsafe, and wider determinants such as housing, income, employment, transport and social isolation.

The updated Speaking for Ourselves report adds an important peer-led perspective. It shows that people want services to understand health holistically, treat lived experience as evidence, communicate in accessible ways, recognise culture and faith without stereotyping, and listen until change happens. The strongest message is that access is not only about providing a service. People need to know it exists, believe it is for them, trust that it is safe, and feel that it understands their culture, faith, language, family context and lived experience.

The focus groups conducted are therefore an opportunity to move from consultation to genuine co-production. They should help design support pathways that are visible, trusted, culturally responsive, practical to access and connected to the community routes that people already use.

Source note

This report is based on the following documents: Mental Health Outreach and Engagement Project End of Project Report, April 2024; SMEF and IMHN report on the mental health impact of Covid-19 on BAME groups and barriers to accessing services and support; ACCESS: Assessing Challenges and Creating Equity for Surrey Services; Baby Steps End of Project Report; SMEF Spectrum Support End of Project Report; and Speaking for Ourselves Peer Research Report.

Appendix 5: Surrey Companions in Care Homes Evaluation report

Dr Susannah Baines March 2025

Introduction

Background

In collaboration with Surrey Heartlands ICB and Surrey Council Older Adults Team, Marie Curie launched a volunteer led Care Home Companion Service within East Surrey to support with ‘What matters to me’ conversations, Advance Care Planning (ACP) and provide additional support at End of Life to staff, patients and their families. The project was funded by Marie Curie for one year until April 2025. The service aim was to provide ACP discussions with residents and to develop ACPs for interested residents, alongside providing companionship to those at the end of life.

The service

The service model was comprised of trained companion volunteers, overseen by a Volunteer Services Officer. As a first step to promote the new service and build relationships with staff, workshops using Life Café resources were held within two interested care homes by the Community Development Manager. Life Cafes are designed to be informal events to help explore conversations around death, dying and bereavement and what is meaningful to people. Both homes held separate sessions for residents and visitors and for staff.

The first home session had four residents and visitors in attendance - with staff to support and another with session with staff (four attendees). The workshops included reflection on what is important to you. Personal experiences of loss were shared but the session was positive with people reflecting on advice they would like to pass on. Staff sessions included discussion about having difficult conversations with family and their own feelings of loss when a patient dies.

The second care home also held separate sessions, the resident and visitors had five attendees, and the staff session had nine. The staff session highlighted that ACP planning was already well embedded within the home. It was a useful session for relationship building and staff were enthusiastic about the companion service.

After the Volunteer Services Officer commenced in post, a further three Life Cafes were held across three care homes attended by nine members of staff, 37 residents and one family member in total. In total eight care homes were approached about the service, with companion volunteers eventually supporting residents and staff across three care homes. The Volunteer Services Officer also attended a face-to-face meeting with the East Surrey Care Home Forum in October 2024 to present about the project to care home managers and representatives from Surrey and Sussex Healthcare Trust (SASH). While the feedback was positive, it did not generate any further interest from the care homes in attendance.

The volunteers

A total of five volunteers were recruited into the service with the first starting in October 2024. All volunteers were recruited via a robust recruitment process which included DBS checks and appropriate screening. Volunteers were provided with a full induction and appropriate training according to their role. There were 45 contacts with volunteers who weren’t recruited due to location, did not respond to efforts to contact, or withdrew during the onboarding process. The volunteers were all female aged between their early 20s to early 60s. Three identified as White British, one as South Asian and another as White European. In total across three care homes, 24 residents were supported across 55 visits over the duration of the project.

Each volunteer would spend up to 3 hours at a time at the care home they were allocated to and would often split that time between two or three residents. After each visit they would email through a brief summary of their visit with comments such as “XX talked about his favourite hobbies” or “XX talked of her concerns about her family situation” or “I met XX for the first time today and they asked me to go back and visit them next time I’m at the care home.”

All details of these visits and Advanced Care Plans were uploaded by the VSO into the Dynamics component of MC Companion from which reports could be pulled. Each time a visit between a companion and care home resident took place, an ‘activity’ was logged with specific information about who theywhat happened during the visit.

Evaluation methodology

The evaluation used a mixed method approach including both qualitative and quantitative data. The interviews were conducted to gain insight into the impact on volunteers, residents and staff about the service. The following data sources were used:

• 2 interviews with volunteers

• 3 survey responses from care home activity staff

• 55 Dynamics records

• 1 interview with the volunteer coordinator

• 2 email feedback on workshop sessions by Marie Curie staff

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 Café 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 impact on people living with a terminal illness.

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 6: 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