JSNA Unpaid Carers

Executive Summary

Unpaid carers are an integral part of Surrey’s health and care system, supporting people of all ages with illness, disability, mental health needs and frailty.  The 2021 Census identifies 90,497 unpaid carers in Surrey, though the true figure is higher due to under-identification.  Caring roles often begin early (with 2,980 of the 90,497 identified being under 18), intensify over time and can span multiple generations, which leads us to an all-age, joined up approach.

This JSNA comes at a time of significant system change.  Local Government Reorganisation and the establishment of a new Surrey and Sussex Integrated Care Board from 1 April 2026, will reshape how support is commissioned and delivered.  This provides opportunities to improve equity and consistency but also risks widening gaps if carer needs are not embedded from the outset.

Key Insights:

• More than 23,000 carers provide 50+ hours of care each week, 710 (3%) are under the age of 24. This is the group at greatest risk of burnout, poor health and financial pressures.

• Carers remain predominantly female; however, boys form a larger share of young carers.

• The cared for population is older than the national average of 65+: 56% are aged 75+, which leads to increasing care demand linked to dementia, frailty and complex health conditions.

• Young carer identification is improving, with 5,115 identified in schools in 2026 through the School Census, although this number is significantly below the estimated 15,400 young carers in the county.

• A growing proportion of carers are accessing support outside standard hours (9-5); one online provider reported that 63% did so, with 80% using mobile phones to access support. This indicates a clear shift toward flexible, out of hours provision and greater choice in how support is accessed.

• The cost‑of‑living crisis has heightened financial vulnerability for many carers, increasing the risk of hardship, material deprivation and reduced income, and deepening the pressures associated with unpaid caring.

Inequalities:

• Caring is associated with deprivation.  Carers in Surrey’s most deprived districts are under-represented in commissioned service activity; this could mean they are unable to access the support in those areas.

• High levels of non-disclosure across ethnicity, language, sexual orientation, religion and employment significantly limit the understanding of equality needs and outcomes for carers.

Carers views:

Insights from 2,454 lived experiences reveal four cross-cutting themes:

• Knowledge and Understanding: carers feel unrecognised by professionals, excluded from decisions and misinformed about rights and services.

• Emotional Wellbeing: isolation, exhaustion, mental health strain and crisis support are common.

• Caring and Life Balance: many carers reduce or stop working; young carers struggle in education; parent carers report chronic strain and limited respite.

• Signposting and Information: information is inconsistent, generic and overwhelming; young adult carers are particularly affected due to inadequate information available specific to their needs.

This JSNA identifies four system wide priorities:

• Make carer identification and carer-friendly practice standard across health, education and social care.  Improve professional training and consistently involve carers in decision making.

• Ensure equitable access to respite by embedding proactive, preventative support across all services, recognising that carers define a “break” differently and need flexible, personalised options.

• Promote carer-friendly workplaces, flexible services, early identification in schools and hospitals, and timely, holistic assessments.

• Provide timely, tailored information and navigation support, with clear pathways, resources and age-appropriate guidance, especially for young adult carers.

Introduction: Why an all-age approach matters

Unpaid caring is a dynamic journey, often beginning in childhood or adolescence and evolving through adulthood. Some people take on caring roles suddenly due to life events, while others experience increasing responsibilities over time. The intensity and nature of caring can shift, with carers moving between age-defined categories, navigating couple-carer dynamics (including role reversal due to sudden illness/accident) or supporting multiple generations simultaneously.

An all-age approach recognises this fluidity, ensuring support systems are anticipatory, inclusive, and responsive. Key considerations include:

• Young carers often transition into young adult and adult carers, facing cumulative impacts on education, employment, and wellbeing.

• Parent carers may support children with lifelong needs, navigating transitions into adult services while managing their own ageing and health.

• Adult carers may care for partners, parents, or children, often with overlapping responsibilities and limited respite.

Understanding the full carer journey enables Surrey to design services that avoid fragmentation and ensure continuity across life stages. This chapter explores the carer journey through:

• Young Carers (0–17)

• Young Adult Carers (18–25)

• Adult Carers (26+)

• Parent Carers

Local Government Reorganisation and NHS Reform: A Changing Landscape

The JSNA chapter on unpaid carers is especially significant against the backdrop of major system change. Devolution and Local Government Reorganisation (LGR) will replace the current county council and 11 district and borough councils with two new unitary councils—East Surrey and West Surrey—from April 2027. This shift will reshape how care and support are commissioned, integrated, and experienced by over 90,000 unpaid carers. While LGR will not deliver services directly, it is designed to create the conditions for high‑quality, sustainable public services by reducing duplication, aligning systems, and enabling more resources to reach the frontline.

For carers, the outcomes of this transition present both opportunities and risks. If carer support is embedded early in the design of new operating models, LGR can strengthen visibility, access, and continuity. However, the reorganisation also carries risks of fragmentation, postcode variation, and disruption, particularly for those who rely most on stable, joined-up support. Given the projected rise in older people living at home and the increasing intensity of caring roles, carers’ outcomes must therefore be a core measure of whether LGR has delivered its intended benefits.

At the same time, NHS reforms are reshaping the wider health landscape. Integrated Care Boards (ICBs) have been tasked with reducing operating costs by around 50% and sharpening their role as strategic commissioners; improving population health, tackling inequalities, and ensuring consistent, high-quality care. In response, NHS Surrey Heartlands and NHS Sussex have agreed to form a single ICB spanning both counties (including Farnham and Surrey Heath, currently within the Frimley system). Supported by ministers and NHS England, this new organisation launched on 1 April 2026, serving more than three million people and aligning with the ambitions of the 10 Year Health Plan for England.

Together, LGR and NHS reform represent a fundamental shift in the commissioning and delivery of care. The JSNA provides the evidence base to ensure unpaid carers are not overlooked during this transition, safeguarding their rights under the Care Act 2014, Childrens Act 1989 and the Health and Care Act 2022, and shaping future strategies to ensure that no carer is left behind.

Strategic alignment for all carers in Surrey

The Joint Strategy for Young Carers 2022–2024 (extended to 2026), co-developed with young carers and families, aims to ensure young carers are recognised, supported, and have equal opportunities to thrive.

Strategic priorities across the system include:

• Increased visibility with staff trained to identify and support young carers.

• Improved understanding of young carers’ rights, for both young carers and the professionals working with them.

• Safe self-identification and advocacy tools.

• Access to appropriate support services, including emotional well-being and mental health support.

• Safeguarding young carers from inappropriate or excessive levels of care through timely assessments of need.

Surrey County Council’s Children, Families and Lifelong Learning Directorate has signed the Young Carers Covenant alongside key partners—NHS Surrey Heartlands and Luminus (home of Healthwatch Surrey). Through this commitment, the partners have pledged to improve outcomes for young carers, including earlier identification, better access to education and employment, strengthened mental health support, and protected time for themselves.

National reports continue to highlight the need for dedicated young carer services, named education leads, improved mental health provision, and a national carers strategy. Locally, work is already underway to strengthen how schools identify and support young carers, raise awareness across the wider system, ensure timely assessments of need, and maintain the commissioning of a specialist young carer service.

Carers are recognised as a priority within Surrey’s Health and Wellbeing Strategy (update 2026), which focuses on reducing health inequalities, alongside NHS commitments to improve carer identification and support. The Surrey Carers Strategy (adults) 2021–2024 (extended to 2026) sets out six priorities:

• Commission high quality services

• Promote carers' rights

• Increase visibility of carers

• Strengthen carer voice

• Support working carers

• Effective communication and engagement

Cross-Government Action Plan to support Unpaid Carers

The first cross‑government action plan for unpaid carers (published 14 July) sets out 42 actions across health, social care, education, employment and social security to improve recognition, referral and support.

Key measures include:

• Carers able to register their role on the NHS App, improving visibility to health professionals and enabling timely referral.

• Introduction of a single patient record so carers no longer need to repeat information and can more easily manage appointments and prescriptions.

• A new GOV.UK carers information page consolidating guidance on health, social care, employment and benefits.

• A national carers’ charter outlining carers’ rights and entitlements.

• Requirements for large employers (250+ staff) to strengthen workplace support for carers from spring 2027.

• Carers embedded in hospital discharge planning through Better Care Fund reforms.

• Improved identification and support for young carers, with schools held accountable through attendance data and strengthened information sharing.

The JSNA recommendations have been reviewed against the action plan to ensure our approach supports the new government action plan. To align with Local Government Reorganisation, the refresh of both strategies has been paused. As the system transitions to two unitary authorities, each will take responsibility for its own carers strategy and embedding the Cross-Government action Plan.

While hidden carers have long been recognised within the system, the JSNA indicates that their needs remain insufficiently understood. Strengthening insight into this cohort will be an important responsibility for the new authorities as they shape future strategies.

All Age Carer Outcomes Framework

A framework has been co-produced by Surrey County Council, the NHS, carers (with support from Luminus), and local service providers to ensure the carer voice is central to all commissioned services. Since 2022, Luminus has gathered insights from contracts and projects alongside a review of the Surrey Carers Strategy. This work led to the development of carer-level outcomes expressed as “I wish…” statements, refined with carers into 11 outcomes across four themes. Providers were consulted to translate these into service-level outcomes and measures, embedding accountability for how services meet carer needs.

The framework also incorporates the Young Carers Covenant, ensuring an all-age approach, and aligns with Surrey’s Health and Wellbeing Strategy. Going forward, the framework will be applied to all new contracts and grants, with outcomes monitored through contract management. Existing contracts may adopt it by agreement, with reporting streamlined to avoid duplication. All new commissioned activity must deliver against at least four outcomes, with final measures agreed at mobilisation to reflect service context.

Local Context - Population and Demographic Profile

The 2021 Census recorded 90,497 Surrey residents aged 5 and over providing unpaid care, representing 8.0% of the population. Although this is slightly below the averages for England (8.9%) and the South East (8.5%), the scale is still substantial in a county of 1.2 million people. Among them, 2,980 young carers aged 5–17 were identified (1.5%), and 3,420 young adult carers aged 18–24 were providing unpaid care (3.6%). The proportion of young carers in Surrey is higher than the averages for both England (1.3%) and the South East (1.5%). However, for young adult carers, numbers in Surrey are slightly lower than England (4.6%) and the South East (4.2%).

It is well known that the number of carers is likely to be higher, as many carers do not recognise or disclose their caring role and services cannot always identify them. Surrey’s approach - through the Carers Strategies, commissioned services, both Adult and Children’s Social Care and Early Help services-has been to strengthen carer identification across the wider system. commissioned services are required to reach into communities to proactively identify carers, engage those who may not recognise their caring role, and ensure they are connected to appropriate support. Surrey has previously encouraged GP surgeries to report the number of carers registered at their practice, in addition to standard NHS England key performance indicators, which do not require carer recording. There is currently no consistent or reliable GP‑coded dataset to provide a Surrey‑wide picture of carers, reflecting variation in voluntary reporting across practices. With the establishment of the new NHS Surrey & Sussex Integrated Care Board, there is an opportunity to strengthen the routine capture and reporting of carers within primary care. This would allow for further analysis of the needs of specific groups, e.g. carers aged 75+.

Table 1: Key Unpaid Carer Demographics in Surrey from 2021 Census

Surrey’s population skews older than the national average—almost 1 in 5 residents (20%) is over 65, a proportion set to exceed 25% by 2041. The older age distribution means that health and functional support needs requiring unpaid care are likely to increase over the coming decades.

When accounting for hours of care, two groups stand out: those providing 9 hours or less and those providing 50+ hours per week. The latter group comprises 23,469 people in Surrey—2.1% of residents, reflecting a pattern found nationwide of increasing care intensity concentrated among a relatively small group. Nationally, the 2021 Census revealed a rise in the numbers providing 50+ hours per week, now totalling over 1.5 million in England and Wales combined, up by 152,000 since 2011.

Women are disproportionately represented among carers: in England, 10.3% of females provide unpaid care compared to 7.6% of males, a pattern echoed in Surrey and possibly more pronounced given the higher female life expectancy and likelihood of older women acting as primary carers. Ethnic and minority group carers remain under-identified in official figures

The 2021 Census shows that 18.3% of the population in England and Wales is from a Black, Asian, Mixed or Other ethnic group, yet these groups make up a noticeably smaller proportion of people recorded as providing unpaid care. In many areas, ethnic minority communities represent 10–20% of the population but only 4–10% of identified carers, indicating a clear gap between expected and recorded prevalence. The Census also shows that when ethnic minority carers are identified, they are more likely to be providing high‑intensity care (50+ hours per week), reinforcing national commentary that they often come into contact with services later and are less visible in early‑stage support pathways. Together, these Census patterns provide strong evidence of the under‑identification and under‑representation of ethnic minority carers in official datasets.

However, Census 2021 also shows that 14.5% of Surrey’s population —around 170,000 residents— is from an ethnic minority background, yet Surrey GP’s identified only around 18,870 carers from these communities. Given national evidence of lower self‑identification and lower service uptake among ethnic minority carers, this local figure is likely to be an undercount.

Young Carers and Young Adult Carers

According to the 2021 Census, across Surrey, 6,398 young carers and young adult carers provide unpaid care each week. Of these, 10% provide 20–49 hours and 5.5% provide 50+ hours. The West records slightly higher numbers than the East, particularly among those providing the most intensive care, though this difference is small and likely reflects the West’s larger population and geography rather than a higher prevalence of caring. The census data aligns with local provider data, showing that young carers aged 17 and under are more concentrated in the West, with notably lower numbers in Tandridge, Mole Valley and Epsom & Ewell.

The most striking finding is the number of children aged 15 and under providing high levels of care. Across Surrey, 282 children provide 20–49 hours of care each week, and 266 children provide 50+ hours, highlighting a significant cohort of very young carers with substantial caring responsibilities.

Table 2: Residents providing unpaid care by age group and district

East Surrey

Elmbridge

Epsom and Ewell

Mole Valley

Reigate and Banstead

Tandridge

West Surrey

Guildford

Runnymede

Spelthorne

Surrey Heath

Waverley

Woking

Surrey

East Surrey

West Surrey

Surrey

School census returns show a marked improvement in the identification of young carers across Surrey between 2023 (when this data was first collected) and 2026. In 2023, 145 schools reported at least one young carer; by 2026 this had risen to 304 schools, representing 77.9% of all schools. Over the same period, the number of schools reporting no young carers fell sharply from 245 to 91, indicating growing awareness and improved recording practices.

The total number of young carers identified through the school census increased from 1,946 in 2023 to 5,124 in 2026—a 163% increase over three years. This rise is likely driven by strengthened engagement with schools, improved understanding of the young carer definition, and greater emphasis on early identification across the system. However, despite this progress, the data still suggests significant under identification. Even in 2026, the majority of schools are recording far fewer young carers than would be expected based on national prevalence estimates (typically 2–3 per classroom). This gap is particularly evident in primary settings, where identification rates remain lower than in secondary schools.

Table 3: Data on unpaid care from the school census showing recording of Young Carers (YC)

Despite rising numbers, the total identified young carers in Surrey remains far below the estimated 15,400, indicating a large hidden population whose age, ethnicity, deprivation levels and caring roles are not well understood. This lack of insight limits the system’s ability to recognise barriers, understand patterns of need, target support, or identify those at greater risk of poor outcomes. A coordinated approach is needed to reach young carers who are not currently known to services, including better data sharing, community‑based identification routes, and safe opportunities for young carers to share their experiences. Hearing directly from young carers is essential to reducing barriers to disclosure and ensuring support is meaningful and proportionate to their needs.

Schools remain the most critical partner in identifying young carers, given their daily contact with children and their role in safeguarding and early help. The fact that 91 schools still reported no young carers in 2026 indicates that further work is needed to embed consistent identification practices. Beyond schools, wider system partners (health, voluntary sector, adult social care, early years, and community organisations) also need clearer pathways and responsibilities for recognising and referring young carers.

Deprivation and Diversity

National evidence shows a clear and consistent relationship between deprivation and unpaid care. Age standardised analysis of Census 2021 by the Office for National Statistics demonstrates that 10.1% of people living in England’s most deprived areas provide unpaid care, compared with 8.1% in the least deprived.  While this 2‑percentage‑point gap may appear small, this is a statistically significant difference.

The inequality is even more pronounced for high‑intensity caring (50+ hours per week), where age standardised rates in the most deprived areas (4.0%) are more than double those in the least deprived (1.9%), indicating that the most demanding caring roles fall disproportionately on those already experiencing disadvantage. Reference: Unpaid care by age, sex and deprivation, England and Wales - Office for National Statistics

Together, these findings highlight that intensive caring roles fall disproportionately on adults already experiencing socioeconomic vulnerability. This research demonstrates that deprivation is a key driver of both the likelihood and intensity of unpaid care, with implications for health inequalities and demand on local support systems.

Surrey is often regarded as affluent but this overall view masks notable inequalities at a more local level. The English indices of deprivation  comprises of 7 standalone indexes which are combined and weighted together to form the Index of Multiple Deprivation 2025 (IMD25) which measures relative levels of deprivation in 33,755 small areas called Lower-layer Super Output Areas (LSOAs), across the whole of England. Surrey’s Health and Wellbeing Strategy, focused on reducing health inequalities amongst Priority Populations of geography, identifies the residents of wards which encompass the most deprived LSOAs in Surrey as Key Neighbourhoods and carers as target groups.

Overall, Surrey County is ranked as 150th upper tier local authorities (out of 153) in terms of deprivation (where 1^st is most deprived). However, Surrey has pockets of deep deprivation; it has 6 Key Neighbourhoods encompassing LSOAs within the most deprived 20% nationally and a further 18 Key Neighbourhoods  encompassing LSOAs among the most deprived 30% nationally. These Key Neighbourhoods are split between west and east in the map below:

Figure 1: Index of Multiple Deprivation 2025 (IMD25) across Surrey LSOAs with Key Neighbourhood Wards

Each of Surrey’s district and borough councils are ranked against the 296 English lower-tier authorities, where 1 is most deprived and 296 is least deprived. Values between 1 and 100 therefore equate to an overall position amongst the most deprived third of council areas. Spelthorne is the most deprived of Surrey’s individual council areas, with values in the middle third of councils; this is true for both overall IMD and all but one of the sub-indices and domains. Tandridge is the most deprived in terms of Barriers to Housing and Services (ranked 87th of 296). Epsom and Ewell is the least deprived overall (ranked 293 of 296).

The table below lists Surrey’s districts and boroughs in order of deprivation (with the most deprived at the top of the table) alongside the hours of unpaid care provided.

Table 4: Deprivation and unpaid care by district and borough showing the intensity of unpaid care provided

The IMD score is based on seven domains of deprivation which were combined using the following weights to produce the overall Index of Multiple Deprivation score:

• Income Deprivation (22.5%)

• Employment Deprivation (22.5%)

• Education, Skills and Training Deprivation (13.5%)

• Health Deprivation and Disability (13.5%)

• Crime (9.3%)

• Barriers to Housing and Services (9.3%)

• Living Environment Deprivation (9.3%).

Higher weightings are given to Income and Employment deprivation. In Spelthorne, ranked the most deprived area overall out of Surrey’s districts and boroughs, 16.9% of the population are experiencing income deprivation (compared to 12.67% in Surrey and 23.19% in England) and 9.8% are experiencing employment deprivation (compared to 7.44% in Surrey and 13.4% in England). In Epsom and Ewell, ranked the least deprived area in Surrey, 11.8% of the population are experiencing income deprivation and 7.0% of the population are experiencing employment deprivation.

Similar trends are also seen in the ‘Income Deprivation Affecting Children Index’. 28% of all children aged 0-15 in Spelthorne are living in income deprived families and 14.4% of children in Waverley are living in income deprived families. This compares to 19.62% in Surrey and 36.25% in England.

Analysis of deprivation at a district and borough level can hide the pockets of deprivation seen at lower-level geographies. Looking at the LSOAs that encompass the key neighbourhoods in Surrey (those areas in the 30% most deprived nationally) demonstrates that the more deprived areas in Surrey are often providing higher proportions of unpaid care. The table below shows the % providing unpaid care in total in the most deprived LSOAs in Surrey – the majority of these areas have percentages above the Surrey figure of 8.0%:

The table below demonstrates: the total percentage of the population in the most deprived LSOAs in Surrey providing unpaid care. (LSOA names are in the format of District and Borough name followed by a reference code for that area).

Table 5: Total providing unpaid care in the most deprived LSOAs in Surrey

Data source: Census 2021 data collated on Surrey-i: Census 2021 Unpaid Care (Data Tables) | Surrey-i

Higher proportions of unpaid care increase exposure to financial strain. In these areas, access to effective benefits advice is particularly important, as complex interactions between carer benefits and cared‑for person entitlements can leave households without income they are eligible for — especially where the cared‑for person lacks capacity or is unwilling to claim.

The table below shows all of Surrey’s most deprived LSOAs exceed the Surrey average (2.1%) for residents providing 50+ hours of unpaid care per week:

Table 6: Total providing 50+ hours of unpaid care in the most deprived LSOAs in Surrey

Data source: Census 2021 data collated on Surrey-i: Census 2021 Unpaid Care (Data Tables) | Surrey-i

High‑intensity caring is strongly associated with financial hardship, poorer health and reduced employment — reinforcing inequalities in deprived neighbourhoods.

Financial Hardship, Cost‑of‑Living Pressures and Unpaid Caring

National Evidence

National evidence highlights significant financial pressures on unpaid carers. Analysis by the London School of Economics (Understanding the characteristics of unpaid carers living in financial hardship: risks and vulnerabilities, 2025) identifies heightened risks of material hardship, fuel and food insecurity, and employment disruption among adults providing intensive care. Recent cost‑of‑living data reinforces these pressures: ONS Household Costs Indices (Jan - Mar 2026) report household cost inflation of 3.6%, rising to 3.7% for low‑income households and renters, with non‑retired households experiencing the greatest squeeze. National evidence from Carers UK also shows that parent carers face significantly higher disability‑related costs and increased risks of material deprivation, contributing to heightened financial strain.

Local evidence

Local insight from the Surrey Health Determinants Research Collaborative’s research into Preventing and Reducing Poverty Amongst Priority Populations in Surrey, aligns with these national findings. Using desk research, a community survey and trauma‑informed vignette‑based focus groups, the study identified carers as experiencing heightened financial vulnerability, with poverty more prevalent among carers (28%) than among those without caring responsibilities (20%). Parent carers also reported substantial financial pressure linked to disability‑related costs and reduced opportunities for paid work. With large numbers of Surrey households affected by cost‑of‑living pressures, carer households are likely to be additionally disadvantaged, experiencing deeper financial strain.

Place‑based inequalities

Local deprivation patterns further shape financial vulnerability among carers. Surrey’s most deprived LSOAs show higher concentrations of hidden carers, greater exposure to cost‑of‑living pressures and more complex household circumstances. As the system transitions to two new unitary authorities, understanding these place‑based inequalities — particularly across district and borough areas — will be essential for designing targeted support and reducing poverty among carers.

Providers also highlighted rising demand for specialist advice related to debt and cost‑of‑living pressures. They reported that carers frequently struggle to navigate complex benefits and Council Tax arrangements, where unclear entitlement and limited access to advice contribute to financial strain. These challenges were most evident in supported accommodation, where information on Council Tax Support is often inconsistent or poorly understood. Providers also noted that for some carers, the emotional strain can result in an inability to address more than one issue at a time, further exacerbating difficulties accessing the support they need.

Surrey findings: Key financial pressures

Across the research, carers consistently emerged as a priority group at heightened risk of financial vulnerability. Key areas of concern included:

• Financial hardship - Carers reported struggling to afford food, fuel and essential household bills, showing clear exposure to financial strain.

• Reduced ability to work- Carers described time‑intensive caring roles limiting ability to work, reducing income and increasing vulnerability to poverty. This impact is particularly pronounced for women, who often sacrifice employment for caregiving, undermining both current and future financial security.

• Insufficient income support - due to low Carer’s Allowance and work restrictions. Carer’s Allowance was widely viewed as insufficient to meet basic living costs, contributing to ongoing financial pressure.

• Barriers to accessing financial help - Carers were overrepresented among those with low awareness and low confidence using support services, and faced complex forms, eligibility rules and long waits, which worsen financial vulnerability.

• Structural cost pressures -Carers identified high housing costs, rising fuel bills and under‑funded disability and mental health support as the biggest drivers of money difficulties in Surrey.

• Additional poverty drivers - Transport and digital poverty further increased costs and limited carers’ ability to access services, compounding financial strain. A JSNA chapter on Transport is due to be published later in 2026 – this chapter explores issues around transport, rurality and access in more detail.

Surrey response

In addition to the Income maximisation service, in May 2026, the Surrey Health and Wellbeing Board approved the Foundation Framework for enabling a Whole System Approach to Poverty as a guide to good practice and maintain momentum of anti-poverty interventions in the Surrey system during Local Government Re-Organisation and the structural changes to the NHS locally.

Additional Inequalities

National research highlights additional inequalities experienced by carers as summarised in the ONS report Unpaid care expectancy and health outcomes of unpaid carers, England - Office for National Statistics. This report highlighted that:

• around one in four adults who were providing unpaid care reported being in “not good health” after adjusting for age, compared with fewer than one in five adults who were not providing any unpaid care; the probability of reporting being in “not good health” was higher for people providing more hours of unpaid care.

• the percentage of unpaid carers reporting at least one health effect related to providing care was higher with increased unpaid care intensity. The highest percentage of adverse health effects were among carers providing 50 or more hours (82.6%) or 20 to 49 hours (75.4%) of unpaid care in the previous week, compared with those providing 1 to 19 hours (43.0%) or no hours of care (34.9%) in the previous week.

• the percentage of male and female unpaid carers having one or more A&E attendances was higher in those providing 20 to 49 hours, and 50 or more hours of unpaid care per week compared with unpaid carers providing 1 to 19 hours of unpaid care, and non-carers, after adjusting for age.

Service Provision for Unpaid Carers - Surrey’s Universal Offer

Surrey’s universal offer for unpaid carers comprises a range of free services and support designed to identify and assist carers of all ages. Since April 2022, the offer has been strengthened through commissioned provision and wider partnership arrangements across the county. It also incorporates the statutory duties of adult social care under the Care Act 2014, support delivered through health services, and the contribution of community, voluntary and faith sector organisations.

Together, these elements provide carers with timely information, advice, assessment and practical support, including a clear route to more personalised help through a statutory Carer’s Assessment. The universal offer is structured to intervene early, reduce or prevent the impact of caring, and sustain carers in their role where appropriate. It reflects a shared system responsibility across social care, health and local communities to recognise carers as expert partners in care, with distinct needs and outcomes of their own.

This includes:

• Information, Advice and Assessment: Under the Care Act 2014, carers have the right to:

  • Be recognised as individuals with their own needs and outcomes, ensuring support is personalised rather than solely linked to the cared‑for person.

  • Access a Carer's Assessment, regardless of the amount of care they provide or their financial circumstances.

  • Receive information and advice about available support, services, rights and local resources.

  • Access support through a range of channels, including digital, telephone and face-to-face options.

• Carer Hubs: Providing tailored advice, information, wellbeing sessions, advocacy, training, one-to-one support, and signposting to relevant services.

• Wellbeing Breaks Payment: A one-off payment enabling carers to take a break in a way that suits their personal circumstances.

• In case of Emergency Card: A quick‑reference card enabling responders to access key contacts if the carer cannot provide support.

• Emergency Planning Tools: support to access national resources (Jointly app, Carers Card UK, MyBackUp, Message in a Bottle, ICE contacts) and advice on powers of attorney to help carers create a clear backup plan with essential care details and routines.

• Personal Health Budgets (PHBs): GP-prescribed payments (typically up to £300) to support carers’ health and wellbeing, used flexibly for therapeutic activities, equipment, or respite.

• Hospital-Based Support: Carer engagement on wards and during discharge planning to ensure continuity of care and recognition of carer roles.

• Dedicated Young Carer Support: Delivering regular clubs across eight Surrey locations on weekdays and weekends. Clubs open to all young carers alongside holiday “fun day” activities and personalised support (including online access) to ensure inclusivity and reach for those unable to attend in person.

• Early Intervention Payments and Travelcards: Financial support for young carers giving them a break from caring and enable them to travel to activities and see friends and family reducing isolation.

• Moving and handling: Providing assessment of carers’ moving & handling needs; offering one-to-one training and online resources.

• Giving Carers a Voice: Independent service gathering carer feedback and ensuring the carer voice is at the heart of all commissioned services.

• Income Maximisation Service: Supports carers and their households to improve financial wellbeing by providing specialist guidance on welfare benefits, debt, energy costs, and other income maximisation options.

• Online outreach support: Online outreach support uses targeted digital campaigns to identify hidden and working unpaid carers, link them to preventative online resources, and refer them into local services when needed.

• Specialist support for carers: e.g. Support for carers of people with mental health conditions and/or substance misuse needs, including Carer Friendly Practice coordination, 121 support and online psychoeducation for carers.

Carers receiving commissioned services

Across Surrey, only a proportion of the carers identified in Census estimates receive support through commissioned services each year. In 2022–23 approx. 10,082 carers were supported, increasing to 15,423 in 2023–24 and then to 19,907 in 2024–25. Figures for 2025–26 indicate 18,087 carers supported. This apparent reduction does not reflect a fall in demand or reach. Historically, counting unique carers has been difficult because many individuals access multiple services. The lower figure for 2025–26 is therefore primarily the result of improvements in how unique carers are now counted, providing a more accurate picture of service reach. This means that a high proportion of Surrey’s carers remain potentially unsupported by formal commissioned contracts, relying instead on informal networks, universal services, or no support at all.

Alongside this, online outreach services significantly extend Surrey’s reach, engaging over 30,000 carers through targeted digital campaigns and preventative content. Within this, 4,577 carers received tailored support such as coaching programmes and structured email courses. These 4,577 carers are included within the 2024–25 total number of carers supported. The provider reports that around 80% of those engaging digitally had not been supported by services previously, indicating that this activity is reaching a substantial additional cohort beyond commissioned contracts particularly hidden and working carers who are less likely to engage with traditional services.

Deprivation and geography: where services are reaching

This section summarises the demographic profile of carers known to the local authority, drawing on data submitted by providers of commissioned services. This profile is based on a snapshot of activity reported between April and June 2025–26 financial year, using data submitted by providers of commissioned services.

Analysis of adult carers supported through commissioned services shows uneven reach across Surrey’s districts and boroughs, reflecting both population distribution and patterns of service engagement. To understand whether support is reaching carers proportionately, activity has been aligned to Surrey‑i’s Index of Multiple Deprivation (IoD25) ranking of districts and boroughs (from most to least deprived).

Table 7: Adults carers supported by district/borough, ordered by deprivation:

Figures taken from reporting on 11,547 carers supported by commissioned services and numbers of people providing unpaid care as reported in the 2021 census.

When grouped into broader deprivation bands using the 2025 Indices of Deprivation (IoD25), the most deprived half of Surrey’s districts (ranks 1–5) account for 44% of all carers supported, compared with 47% in the least deprived half (ranks 7–11). The middle-ranked district, Mole Valley, accounts for the remaining 9%. Given the higher underlying need typically associated with more deprived communities, including greater caring intensity, poorer health outcomes and reduced financial resilience , we would expect the most deprived areas to represent a larger share of activity. Instead, the distribution is weighted toward less deprived districts, indicating that carers in more deprived areas may be under-represented in commissioned service reach.

Young carers show a distinct pattern when viewed separately from the overall totals. In the five most deprived districts, they make up around 12% of all carers supported, compared with 7% in the least deprived areas. This indicates that young carers form a larger share of the caring population in more deprived communities, reflecting the higher underlying prevalence of young caring roles in households facing socioeconomic disadvantage.

Addressing these imbalances will require strengthening outreach in districts with lower engagement, reinforcing referral pathways across health, education, community and voluntary partners, and ensuring services are accessible to carers with limited time, digital access or transport. Ongoing monitoring of uptake by deprivation band and district will be essential to identify gaps over time. These insights should guide future commissioning so that support is proportionate to need and reaches carers in all parts of Surrey, particularly those facing socioeconomic disadvantage.

Local Government Reorganisation (LGR)

IoD25 shows that deprivation in Surrey is not defined by a simple East/West split. Both proposed unitaries contain districts with significant pockets of deprivation alongside areas of relative affluence. Carers data from districts and boroughs reinforces this pattern: carers in more deprived districts support people with higher levels of long‑term illness, disability and complex need, yet appear proportionally under‑represented in commissioned service activity. In less deprived districts, carers are more visible in recorded activity. This indicates that the new unitaries will inherit different underlying need profiles at neighbourhood level, and that improving equity of access will be essential to ensure support is proportionate to need across both areas.

Age and sex of carers

The age profile of carers supported through commissioned services shows a clear concentration in later working age and older adulthood. The 55–64 age group forms the largest cohort, with substantial numbers also seen in the 75–84 and 65–74 age bands. Mid‑life carers aged 45–54 remain a significant group, though smaller than the peak in later working age.

Younger carers are represented in smaller numbers, with the 18–24 group being the smallest and the 0–17 group showing moderate but comparatively lower activity.

This distribution reflects both the life‑course pattern of caring — which typically intensifies in later working life and into older age — and the demographic profile of Surrey, which has a higher proportion of older residents than the England average.

Figure 2 illustrates the full age spectrum of carers, from those under 18 to those aged 85+, highlighting the need for inclusive, age-responsive support.

Figure 2: Age profile of unpaid carers supported through commissioned services

This profile informs targeted messaging and service design, with particular emphasis on:

• Ensuring digital access and confidence across all age groups, including older carers

• Developing age-appropriate and targeted services, resources and publicity materials for harder to reach groups of carers, e.g young adult carers.

• Embedding flexibility for working-age carers balancing employment and caring roles

• Supporting transitions into retirement and older age, where caring roles may shift or intensify; and from young carer into young adult carer where Children’s support services will drop off.

Women account for 70% of carers locally, with men making up 19%, and small proportions identifying as gender non‑conforming or selecting “prefer not to say”. A further 12% of records have no gender disclosed, limiting full interpretation. Nationally, an estimated 59% of unpaid carers are women and 41% are men, indicating that the local carer population remains more strongly female‑skewed than the national picture. This aligns with wider Surrey intelligence on gendered patterns of unpaid care and the interaction between caring, employment and financial risk.

When looking specifically at young carers, the gender pattern shifts. Young carers account for 10% of all female carers but 22% of all male carers, meaning boys make up a proportionally larger share of the young carer population than they do of the adult carer population. This highlights the importance of recognising that caring roles among boys may be more visible or more intensive and reinforces the need for gender‑sensitive identification and support pathways.

Ethnicity, language and inclusion

Across adults and young carers combined, ethnicity data is requested from carers. However, the completeness and reliability of this data varies significantly between adults and young carers, shaping how confidently the profile can be interpreted.

Adults

Of 4673 adults in the quarter, ethnicity is unknown for 38% of carers due to high levels of Not Disclosed and Prefer not to say. Among those who do disclose, the majority identify as White British or White Other, with Asian, Black, Mixed and Other ethnic groups each representing small proportions of the known adult carer population. Because such a large share of adult records lack usable ethnicity data, it is not possible to determine whether carers from minority ethnic communities are proportionately represented relative to Surrey’s wider population, where around one in five residents identifies as Black, Asian, Mixed or another minority ethnic group.

Young-age Carers

Young carers show a much stronger disclosure rate, providing a clearer and more reliable picture of diversity. While White British young carers remain the largest group (around 55%), this is lower than the adult proportion, indicating greater ethnic diversity among younger carers. Mixed ethnic groups form the second‑largest identifiable group, and Asian young carers—particularly those of Pakistani, Chinese and Indian backgrounds—are present in small but meaningful numbers. Black young carers appear in very small numbers, consistent with Surrey’s demographic profile but also potentially reflecting barriers to identification.

Combined Interpretation

Taken together, the adult and young carers data suggest that:

• The known carer population is predominantly White, but this is heavily influenced by adult non‑disclosure.

• Young carers are more ethnically diverse, reflecting Surrey’s younger population and potentially different patterns of caring within minority ethnic communities.

• Minority ethnic carers, both adults and young carers, may be under‑identified or less visible to services, consistent with national evidence on barriers to recognition and support.

• The contrast between adults and young carers highlights that better recording is possible, and that current adult data gaps are driven by practice rather than feasibility.

Language (adults only, not collected for young carers)

Language data is recorded for 694 adult carers across in the period. The majority, 83%, reported English as their main language. A further 16% reported another language, including Other (14%), Spanish (0.7%), French (0.3%), and Arabic (0.3%). Only 0.9% of records were marked as Not Disclosed/Not Given. National evidence shows that carers with limited English proficiency can face additional barriers to navigating support, making continued attention to inclusive communication essential. Language data will begin to be collected for young carers from 2026.

Sexual orientation (adults only, not collected for young carers)

Sexual orientation data was recorded for 4,469 adult carers in the period, but the dataset is dominated by non‑disclosure. 78% are coded as either Not Disclosed or Prefer not to say, making sexuality one of the least reliably recorded protected characteristic. Among those who did disclose, 21% identify as heterosexual, with fewer than 1% recording a minority sexual orientation such as bisexual, gay, lesbian or “other”.

National research shows that LGBTQ+ people are at least as likely as others to provide unpaid care, so the extremely low level of local disclosure almost certainly reflects inconsistent recording practices and low provider confidence, rather than a true absence of LGBTQ+ carers. This severely constrains equalities analysis and makes it harder to understand whether local services are inclusive, welcoming and accessible for LGBTQ+ carers.

Religion (adults only, not collected for young carers)

Religion or belief is recorded for 4,471 adult carers across the financial year 2024/25, but the dataset is dominated by non‑disclosure. 82% fall into categories such as Not Disclosed, Not Declared, Not Sure or Unknown. This makes religion the least reliably recorded protected characteristics, alongside sexuality and armed forces status.

Among carers who do disclose their religion, the majority identify as Christian (10%), reflecting Surrey’s wider population profile. Smaller numbers identify as Muslim, Hindu, Sikh, Jewish or Buddhist, with each group representing well under 1% of the total dataset. 7% explicitly record having no religion, a figure that is likely under‑represented given national trends and the scale of missing data.

The very small numbers recorded for minority faith groups should not be interpreted as evidence of low prevalence. Instead, they reflect inconsistent recording practices, with many providers not routinely asking about religion or belief. This limits the ability to understand whether carers from minority faith communities are being identified, whether their cultural or religious needs are recognised, or whether services are accessible and inclusive. This data will be proactively collected for young carers from 2026.

Employment (Adults only)

Employment status was recorded for 4470 adult carers across during the period, but the dataset is heavily affected by non‑disclosure. Disclosure is limited, with 37% recorded as Not Disclosed/Not Given, restricting the ability to fully understand carers’ financial resilience and work–care balance. This significantly limits the ability to understand carers’ financial resilience, work–care balance or risk of economic hardship.

Among carers who do disclose their status, the largest group is Full Time Carers at 36%. This reflects the intensity of caring roles locally and aligns with national evidence that many carers reduce or leave paid employment due to the demands of caring. A further 6% are recorded as retired, which is consistent with Surrey’s older age profile.

Among carers in employment, working full time 10% of all records and working part time 10% are the most common categories, with smaller numbers recorded as unemployed 1%, self‑employed 0.3% or in full‑time education 0.5% These figures should be interpreted cautiously due to the scale of missing data, but they indicate that a substantial proportion of carers are balancing paid work with caring responsibilities.

While the dataset shows that a substantial number of carers are balancing paid work with caring responsibilities, the high level of non‑disclosure continues to limit the reliability of employment analysis. Data on young carers education status will be proactively collected from 2026.

Armed Forces

A more robust approach to recording armed forces status is needed. Across the dataset, over 72% of all entries fall into non‑disclosure categories such as Not Disclosed, Not Declared, Not Sure or Unknown, meaning that armed forces status is not recorded for the vast majority of carers and cared‑for people. Fewer than 1% of carers are recorded as ex‑military, and only around 2% of cared‑for people are recorded as currently serving or previously serving. These extremely small proportions almost certainly reflect inconsistent recording rather than true prevalence, given national evidence that armed forces communities are present across all age groups and are no less likely to take on caring roles. The scale of missing data significantly limits equalities analysis and makes it difficult to understand whether carers with military backgrounds are being identified or supported appropriately.

Profile of cared‑for people (adults only)

10,567 carers were reported in the period. Primary condition of the cared‑for person breakdown:

Table 8: primary condition of those being cared for (2025/26)

The profile indicates that dementia is the most common primary condition (23%), followed by learning disability and autism (16%), long‑term illness and care needs (15%), physical disability (11%), and other conditions (11%). Smaller but still significant groups include elderly/frail (7%), mental health and substance misuse (9%), complex needs (4%), children with additional needs (4%), and end‑of‑life care (0.1%).

This distribution reflects an ageing population with elevated levels of cognitive impairment and long‑term illness, consistent with Surrey’s higher‑than‑average life expectancy and projected growth in older age groups. Dementia remains a key driver of high‑intensity caring, often requiring 24‑hour supervision, emotional labour and complex coordination.

Nationally, carers are most likely to support someone with a long‑term health condition, physical disability or age‑related frailty. Surrey’s local profile aligns with these patterns, with a substantial proportion of carers supporting people living with dementia, long‑term conditions, disability and frailty.

The prominence of the learning disability and autism group (17%) locally reinforces Surrey’s strategic commitment to improving outcomes for people with learning disabilities and autistic people. It also highlights the importance of specialist, family‑inclusive support pathways that recognise lifelong caring roles and the need for tailored, accessible support.

Age of cared for (adults only)

Providers report age using different and overlapping bands (for example 0–4 and 0–5; 25–34 and 25–45; 65–74 and 66–84). These cannot be summed without double‑counting. To ensure consistency and alignment with national datasets (ONS population estimates, NHS Digital adult social care returns and Adult Social Care Outcomes Framework), all records have been re‑coded into standard age groups:

• 0–17,

• 18–24,

• 25–34,

• 35–44,

• 45–54,

• 55–64,

• 65–74,

• 75–84,

• 85+,

• Not given/Unknown.

Where a provider band spanned multiple categories (e.g. 25–45 or 66–84), the record was allocated to the closest matching band based on midpoint. This approach provides a coherent and comparable age profile while remaining transparent about data limitations.

Figure 3: Age distribution of those cared for

The re‑coded age profile shows a predominantly older cared‑for population, with 62% aged 75 and over. This reflects Surrey’s ageing demographic and high prevalence of dementia, frailty and long‑term conditions.

Older adults (65+) account for 71%

• 75–84: 1,598 people (30%)

• 85+: 1,710 people (32%)

• 65–74: 505 people (9%)

This distribution underscores the need for dementia‑capable services, frailty pathways, intensive home‑based support and end‑of‑life planning. It also explains the high proportion of carers providing daily or overnight care.

 Adults (18–64) represent 13%

• 18–24: 155 (3%)

• 25–34: 148 (3%)

• 35–44: 79 (1%)

• 45–54: 103 (2%)

• 55–64: 240 (4%)

These cared‑for people often have long‑term conditions, disabilities, mental health needs or complex support requirements. Their carers frequently balance employment, parenting and caring responsibilities.

Children and young people (0–17) make up 15%

• 0–17: 823

This group includes children with learning disabilities, autism and complex health needs. Parent carer roles are typically lifelong, requiring coordinated, family‑centred support and smooth transitions into adulthood.

Missing age data remains notable (5%)

• Not given / Unknown: 296

This limits full interpretation and highlights the need for improved provider recording practices.

Data quality, gaps and implications

Across multiple characteristics, high levels of nondisclosure significantly limit the ability to understand the full equalities profile of carers. This reflects national patterns of under identification and variable recording but given Surrey’s diverse communities and the known impact of caring on health, employment and financial wellbeing, improving data completeness remains essential for both statutory equalities duties and targeted commissioning:

• Ethnicity, language and sexual orientation are frequently recorded as Not Given or Prefer not to say, making it difficult to assess equity of access, outcomes or experience.

• Employment status is missing or undisclosed in nearly half of all carer records, despite its relevance to financial resilience, eligibility for support and work–care balance.

• Age bands for cared‑for people are reported inconsistently across providers, with overlapping ranges (e.g. 0–4 and 0–5; 25–34 and 25–45), preventing reliable aggregation and comparison.

• Cared‑for age data includes a significant proportion of Unknown or Not Given entries (5%), limiting visibility of life‑stage needs and transition points.

• Primary condition of the cared‑for person is recorded in broad categories, but some providers do not routinely capture this field, reducing the ability to link carer strain with condition type.

• Gender identity and trans status are not consistently recorded, despite their relevance to inclusive service design and equalities assurance.

• Implications for commissioning and equalities assurance.

Taken together, the data suggests that locally recorded carers are:

• More likely to be older and female, in line with Surrey’s age profile and national caring patterns.

• Supporting people primarily with dementia, long‑term illness, disability, frailty and learning disabilities/autism, often in high‑intensity or lifelong roles.

• Not yet fully visible in relation to ethnicity, language, sexual orientation, gender identity and other protected characteristics, limiting the ability to evidence equity of access, impact or outcomes.

• Caring for people who are predominantly older (56% aged 75+), but also for children and working‑age adults with complex needs, highlighting the need for life‑course commissioning and flexible support models.

• Balancing caring with employment, though this is under‑recorded, and many carers may be at risk of financial hardship or social exclusion.

Data improvement and visibility

Surrey County Council has introduced more standardised data collection requirements across commissioned services, including clearer fields for equalities and cared‑for information. However, the quality of data ultimately depends on providers being suitably skilled and confident to hold sensitive conversations about identity, circumstance and need. Strengthening provider capability, alongside consistent expectations and monitoring, is therefore critical to improving accuracy and visibility of all carers.

Carer wellbeing breaks payments

Since its launch in June 2025, early equality analysis of the Carer Wellbeing Breaks payment, benchmarked against quarter 4 2025 commissioned‑services data, shows that the person‑level payment model is widening access across several groups who have been less visible in traditional pathways. Uptake is more closely aligned with deprivation levels, with increased access in the most deprived districts (+5%) and reduced concentration in the least deprived areas (–7%), suggesting the model is beginning to rebalance reach across Surrey.

Its success is believed to stem from the flexibility of the payment design: a break means different things to different carers, and the model allows each carer to decide how best to meet their own wellbeing needs—whether through rest, social connection, or practical support—rather than prescribing a single form of break.

There is a notable shift in engagement among male carers (+7%), indicating that the payment route may be more accessible for groups who typically engage less with commissioned services. Younger adults, particularly those aged 25–34, are also more visible, pointing to the model’s flexibility for carers balancing work, study, and caring roles. Minority ethnic groups show an 8% increase in representation compared with commissioned services, suggesting improved reach into communities historically under‑represented in carer support.

Data on religious beliefs is limited by a high proportion of ‘unknown’ records, but early patterns show lower representation across most stated belief groups and higher visibility within ‘other religion/belief’. Transaction data highlights significant variation in how carers use payments, reinforcing that a “break” is defined by carers themselves and demonstrating the model’s strength in personalisation, cultural adaptability, and restoring choice and control.

Overall, the wellbeing breaks payment is broadening the diversity of carers supported across Surrey and providing an additional, accessible route alongside commissioned provision. As referral volumes continue to build, ongoing monitoring will be essential to understanding emerging patterns and ensuring equitable access across all groups.

This chapter provides a robust baseline for JSNA reporting and equality impact assessment, while highlighting where improved identification and recording will strengthen Surrey’s understanding of who is caring, in what circumstances, and with what consequences. Improving data completeness will depend not only on system recording but on providers having confident, sensitive conversations and carers feeling willing and safe to share information.

What are Surrey Carers Telling Us?

Luminus CIC’s “Giving Carers a Voice” 2025 report was commissioned to inform the all-age unpaid carers JSNA chapter. Luminus gathered carer insights across four priority groups: young carers, young adult carers, parent carers, and adult carers.

Methodology:

• Phase 1: Desk-based analysis of 2,454 carer experiences (including 311 young carers) organised into thematic categories.

• Phase 2: Validation through 21 targeted events with 186 unpaid carers, testing themes, identifying gaps, and surfacing unmet needs.

Key Themes:

1. Knowledge & Understanding

2. Emotional Wellbeing

3. Caring and Life Balance

4. Signposting and Information

This iterative approach ensured the JSNA chapter reflects lived experience and distinct perspectives. Direct quotes from carers illustrate the themes, which were further developed through group discussions at the JSNA multi‑agency stakeholder workshop on 27 March 2025. Five mixed groups of providers, VCSE partners, education, health and commissioning colleagues reviewed the four themes identified by carers, considering whether the themes aligned with what they see in practice, whether additional gaps existed, and the key priorities for improvement. Stakeholders strongly endorsed the themes, noting they reflected long‑standing unmet need, and identified several cross‑cutting priorities alongside theme‑specific insights. This feedback has been incorporated into each section of the JSNA.

Summary of Findings by Age Group

Young Carers (0–17):

• Not identified from a young age

• Insufficient tailored and local support groups

• Difficulty balancing school and caring responsibilities

• Lack of understanding from professionals and teaching staff

• Isolation and loneliness

Young Adult Carers (18–25):

• No communication of carer responsibilities during transition to adulthood

• No tailored or relevant information

• Difficult to identify young carers (aged 16-17yr) and young adult carers in further education settings

Adult Carers (26+):

• Not being identified as a carer or reluctance to be labelled

• Lack of knowledge and training for professionals

• Not involved in decisions about the cared for person

• Insufficient tailored support services and information

• Impact of caring on wellbeing and emotional health

• Difficulty achieving a caring/life balance

Parent Carers:

• Struggle to get support due to no or late diagnosis of child’s condition

• Not referred to professionals with specialist knowledge

• Need for a single case worker to advocate from birth to adulthood

• Difficulty accessing statutory help (e.g., EHCPs)

• Feeling blamed and shamed for the behaviour of their cared for

• Impact on wellbeing and emotional health not supported

• Difficulty achieving a caring/life balance

• Lack of support and respite services

Theme 1: Knowledge & Understanding

Carers report that professionals across health, social care, and education often lack understanding of the carer role, fail to identify carers, and exclude them from decisions. Key issues include:

• Adult and parent carers feel unheard and undervalued, despite providing 24/7 care.

• Poor information-sharing between services undermines joined-up care.

• Mental health services lack condition-specific expertise and fail to acknowledge carers.

• Carers struggle to get the cared for person to appointments and request more home-based support.

• Early diagnosis helps carers manage their role more effectively.

• Parent carers feel blamed for their child’s behaviour, especially with Pathological Demand Avoidance (PDA).

• Some carers reject the “carer” label, preferring recognition as a partner or family member, while others accept it for access to support.

• Early identification is critical to accessing help and preventing crisis.

• Carers are frequently excluded from decisions about the cared for person’s treatment or support, with patient confidentiality often cited as a barrier.

What’s needed:

• Improved knowledge and understanding about unpaid carers among professionals.

• Co-designing solutions with unpaid carers.

• Early diagnosis of carer health conditions.

• Referrals to specialist practitioners.

• Personalised advice and support.

• Involvement of carers in hospital care and discharge processes.

• Consistency of care for neurodivergent people or those with cognitive impairments.

• Prompt diagnosis for cared for children.

Theme 2: Emotional Wellbeing

Adult carers consistently report high levels of emotional strain, isolation, and deteriorating mental health. Support services are described as limited, with access often dependent on reaching crisis. Key points:

• Carers feel isolated and unsupported, often having to self-navigate for help

• Funding cuts have reduced valued services, increasing pressure on families

• Many carers were unaware of the organisations that could support them until directly engaged

• Voluntary sector groups are valued but vulnerable to funding loss

• Carers report exhaustion, mental health strain, and loss of employment due to caring demands

• Transport and time constraints limit access to respite and peer groups

• Services often focus only on the cared for person, ignoring the wider family impact

• Waiting lists for specialist respite services are lengthy

• Carers supporting people with severe mental health issues face barriers to accessing respite

• Carers who received assessments said they led to no outcomes or follow-up

• Transition from children to adult services is abrupt, with carers often excluded once the cared for person reaches adulthood

What’s needed:

• Information and quick access to respite care.

• Services to support unpaid carers as well as the cared for.

• Regular contact with unpaid carers to monitor wellbeing.

• Consistent offer across Surrey of the PHB for carers’ wellbeing.

Theme 3: Caring and Life Balance

Carers report challenges balancing care with employment, neglecting their own health needs, and experiencing isolation and loneliness. Key points:

• Many adult and parent carers stop work due to caring demands.

• Carers lose access to hobbies, social connections, and personal time.

• Young carers struggle to balance school with caring responsibilities.

• No formal mechanism to communicate young carers’ responsibilities to further education providers.

• Parent carers need choice and control over assessments.

• Carers worry about what would happen to the cared for person if they became ill.

• Support groups are valued but must be flexible and accessible.

• Carers with neurodiverse needs require advocacy and tailored support.

• Schools often fail to meet the needs of neurodiverse or vulnerable children.

What’s needed:

• Services covering information, respite, temporary carer arrangements, and emotional support.

• Services to enable carers to continue working.

• Guidance on contingency planning for replacement care.

• Information about costs and support for emergency and respite carers.

• Proactive communication from health and social care services.

• Funding and statutory provision for cared for children in school.

• Mechanism for recognising young carers as they transition to young adult carers.

• Supportive approaches in education for young carers.

Theme 4: Signposting and Information

Carers of all ages frequently face gaps in information and poor signposting from professionals. Many are unaware of their rights, entitlements, and available support services, often finding help through informal networks rather than professionals. Key points:

• Professionals are often unequipped to provide tailored advice.

• Carers may not identify as carers, complicating signposting.

• Generic leaflets are overwhelming; carers want personalised, relevant, and ideally face-to-face information.

• Carers with neurodiverse needs struggle with large volumes of written material.

• Language barriers and digital exclusion prevent access to resources.

• Carers supporting people with complex conditions need specialist information.

• Poor signposting leads to wasted time, financial cost, and emotional distress.

• Young adult carers are underserved by current information, which targets older adults.

What’s needed:

• Early identification of carers by professionals.

• Timely, accurate, and relevant information.

• Specialist information for carers of adults and children with behavioural issues.

• Personalised and one-to-one information.

• Support on rights and legal issues.

• Age-appropriate information for young adult carers.

Young Carers

A young carer is anyone aged 17 or under who regularly supports a family member or friend unable to cope without their help—often due to illness, disability, mental health conditions, or addiction. Many care for siblings with additional needs, while others support parents and manage household responsibilities independently.

Prevalence and Identification

• The 2021 Census recorded 127,175 young carers aged 5–17 in England and Wales, though Carers Trust estimates the true figure may exceed one million, with some carers as young as five.

• Under-identification is common due to stigma, adult-led reporting, and lack of awareness—many families do not recognise or disclose young caring roles.

• Recent research by the Carers Trust (Young Carers in Education Report) estimates there may be two young carers in every classroom.

• In Surrey, identification is improving:

  • School census data shows a rise in the recording of young carers from 1,948 (2023) to 5,125 (2026), the second highest in the country after Kent.

  • Referrals to the specialist Young Carer commissioned service have reached 3,495 since July 2022.

  • 900 staff completed mandatory Young Carer Aware training in Children, Families and Lifelong Learning.

  • 241 Young Carer records have been created on SCC Children and Families Early Help Module (EHM) system since March 2025, and 120 Young Carer Assessments of Need completed.

  • 36 Young Carer conversations were carried out by Adult Social Care between May 2025 – April 2026.

In 2026, an ‘In Our Own Words’ research study, conducted by a Surrey young adult carers, involving 13 young carers (aged 11-18yrs) highlighted the vital but often hidden role young carers play and the challenges they face in balancing education with significant caring responsibilities. The findings show that while awareness is increasing—particularly within schools—this is not yet translating into consistent or meaningful support: although 85% of young carers said their school is aware of their role, only 15% feel fully supported. Most (77%) provide care every day, often involving substantial practical and emotional responsibilities, and all reported that caring negatively impacts their education, including concentration, attendance, and completing work. Emotional wellbeing is also a concern, with 100% reporting stress and limited time to rest. Overall, the research highlights a clear gap between identification and effective support, alongside a need for greater understanding, flexibility, and responsive services to address the educational and wellbeing impacts experienced by young carers in Surrey.

The needs of younger young carers, particularly children aged 0–5, are largely invisible in policy, data, and practice, despite caring responsibilities often beginning in infancy or early childhood. Since March 2025, 14 young carers aged 0-4yr have been identified on SCC Children and Families Early Help Module (EHM) system. The 2025 MYTIME Born To Care Report found the primary need of young carers aged 0-5 is:

• Early identification and early support

• Family-centred interventions

• Protection from inappropriate caring responsibilities

• Continuity of support across educational transitions

• Professionals trained to recognise young carer experiences.

The report argues that timely recognition and support can improve wellbeing, school readiness, development and longer-term life outcomes, while preventing the accumulation of educational, social and mental health disadvantages.

Health and Wellbeing

Young carers consistently report that their caring responsibilities impact their physical and emotional wellbeing. Many struggle to access support due to long waiting times, strict referral criteria, and limited awareness of available services.

A snapshot taken in November 2024 showed that only 639 young carers were registered with GPs in Surrey Heartlands, despite registration enabling access to support such as carers’ prescriptions and Personal Health Budgets. This suggests many young carers remain unidentified within health services. Early identification is critical to maintaining good health and wellbeing.

Protecting and sustaining good emotional wellbeing remains a consistent concern. Young carers describe feeling anxiety, constant worry and emotional strain, with research demonstrating they are much more likely to experience poor mental health (Being a young carer is not a choice - its just what we do - report). Many suppress their own needs to care for others and fear judgement or family separation if they disclose mental health difficulties. Trusting relationships with professionals are essential to enable safe disclosure and tailored support.

Despite the recognised impact of caring on emotional wellbeing, there is currently no consistent data on young carers accessing health and wellbeing services in Surrey. While referrals to the commissioned provider do occur, uptake is not routinely tracked. Young carers are recognised as a priority population within the Children and Young People’s Emotional Wellbeing and Mental Health Strategy 2022–2027; however, there is no dedicated pathway into support. This represents a missed opportunity for early identification and intervention.

The Surrey and Borders Partnership NHS Foundation Trust (SaBP) Five Year Carers Strategy (2026–2031) identifies young carers and young adult carers as a frequently overlooked group whose caring responsibilities can significantly affect their emotional wellbeing, physical health, education and future opportunities. The strategy also highlights that many young adult carers do not identify themselves as carers and may therefore remain hidden within services.

SaBP has committed to improving the identification and recording of young carers and young adult carers, increasing staff awareness of the impact of caring responsibilities on wellbeing and educational outcomes, developing age-appropriate resources, and adopting a whole-family approach that recognises the needs of carers alongside those of the person receiving care. This is particularly important for young carers who have their own health conditions, as they may face additional barriers and vulnerabilities.

Young carers with their own health conditions face compounded challenges. Their needs are often deprioritised, and caring responsibilities can worsen existing conditions. Additional support is needed to ensure their health is protected and their life chances are not diminished.

Feedback from young carers who participated in the Our Voice Matters 2025 survey further demonstrated the impact that caring responsibilities can have on mental health and wellbeing when compared with peers who do not have caring responsibilities. A summary of these findings can be found in Annex 1.

Education

Young carers face significant barriers to educational attainment, missing an average of 23 school days annually, Persistent absence correlates with lower academic outcomes—only 40.2% of persistently absent pupils meet expected standards at the end of Key Stage 2. Caring responsibilities create substantial and measurable educational disadvantage, which in turn limits young carers’ future prospects (Caring and classes 2025 - attainment report).

• Despite an estimated 15,393 young carers in Surrey, only 5,125 were identified in the 2026 school census, highlighting a substantial gap in identification.

• Surrey’s Angel Award, developed by young carers and the specialist commissioned service, supports schools to meet eight standards including having a young carers lead, policy, and peer group. Currently, 86 schools have achieved the award, with 96 more working towards it.

Feedback from Surrey young carers (via Luminus) reveals inconsistent support—some report detentions for lateness, lack of trusted adults, and dismissal of homework challenges. Others describe positive experiences where designated staff and peer groups reducing stress and improving wellbeing.

Schools report needing more training and funding to run assemblies and support groups. The specialist commissioned service offers a self-guided assembly resource pack, but uptake varies. Mobile phone policies also impact young carers’ ability to stay connected with the cared for, raising safeguarding concerns and heightened anxiety when removed for long periods.

Home‑educated young carers face additional barriers to being identified and supported. Surrey’s Elective Home Education team is working to address this by including young carer information in welcome packs and newsletters to encourage self‑identification and access to services. However, there is still no data on how many young carers are educated at home, where the impact may be greater due to their constant presence in the home, increased proximity to the person they care for, and fewer opportunities for time away from caring responsibilities.

Transition assessments under the Care Act 2014 for young carers aged 16–18 are a statutory duty, yet there is currently no local data on completion rates. Professionals report a lack of continuity between children’s and adult services, with young carers and their families frequently required to retell their stories as they move between services. The transition at Year 11 is a particularly important point in the young carer journey, as many young people move from secondary school into sixth forms, sixth-form colleges, further education colleges, training or employment. This can result in changes to support networks, information sharing arrangements and opportunities for identification. Strengthening transition planning, including the transfer of relevant information, timely reassessment of needs, and clear pathways into post-16 education and support services, would help ensure young carers continue to be recognised and supported during this critical period of change.

Social and Leisure Participation

Access to social and leisure activities is vital for young carers’ wellbeing, offering respite, peer connection, and a chance to simply be children.

• The specialist service is commissioned to deliver 30 support groups and 25 activity sessions each quarter—including escape rooms, pizza parties, museum visits, and family fun days.

• Additional groups, run by other charities, operate in Woking, Cranleigh, Leatherhead, Guildford, Godalming, and Hale.

These services are a lifeline for many young carers, yet demand outstrips supply. Travel constrains, limited geographic coverage, and lack of awareness restrict access. Young carers express a need for more one-to-one tailored support, consistent groups, and direct communication—preferably via mobile-friendly platforms and QR codes.

The Carers Trust Young Carers Survey 2023 found caring responsibilities significantly limit young carers’ ability to take part in social and leisure activities, often leading to isolation, exclusion, and poorer wellbeing. As a result, their childhood is more restricted and responsibility-heavy than their peers, making access to structured social opportunities and breaks from caring essential to improving outcomes (Being a young carer is not a choice - its just what we do - report).

The mental health benefits of regular breaks are well-evidenced, especially during school holidays. However, uptake of financial support remains low:

• Only 37 young carers received a £300 Personal Health Budget in 2024–25, and 23 in 2025-26.

• Just 383 accessed the £200 Early Intervention Fund in 2025-26.

Professionals cite low awareness and complex referral processes. Presentations to social workers, Early Help practitioners and GP engagement are underway to improve visibility and streamline access.

Finances

The 2023 Young Carers Survey found the cost-of-living crisis has placed significant financial strain on young carers, increasing stress and forcing many to take on financial responsibilities or miss opportunities. This financial pressure not only affects their families’ stability but also limits young carers’ ability to participate fully in education, social life, and personal development.

An All-Party Parliamentary Group for Young Carers & Young Adult Carers report (APPG Young Adult Carer inquiry report) found young carers face significant financial disadvantage, with caring responsibilities increasing costs, limiting income, and restricting access to education and opportunities. As a result, many are forced to make decisions based on financial survival rather than ambition, creating long-term impacts on their wellbeing and future prospects.

Financial pressures intensify at key transition points, particularly when welfare benefits change at ages 16 and 18, and when young people leave education or become NEET. These pinch points underline the need for accessible financial capability support and clear advice on money matters as young people move into adulthood.

To provide financial support to young carers, Surrey County Council funds travelcards for those aged 14-17 years, enabling them to use public transport to see friends and attend activities. However, younger children are still reliant on their parents, many of whom cannot afford the transportation costs.

Safeguarding

Local authorities have a statutory duty under the Children and Families Act 2014 to assess young carers’ needs and ensure their caring role is safe and appropriate, supported by a whole‑family approach and joint working between children’s and adult social care.

In Surrey, practitioners identify young carers through conversations and observations to understand the circumstances of the child and family. Where a caring role is found to be negatively affecting a young carer’s education, health, wellbeing or socialisation, a Young Carers Assessment of Need is offered. This assessment helps practitioners build a full picture of the family situation, capture the young carer’s wishes and feelings, and identify appropriate interventions to reduce any negative impact.

Since March 2025, 120 Young Carer Assessments of Need have been completed and Adult Social Care has undertaken 36 young carer conversations, though a formal referral pathway between services remains a gap. Despite recent improvements, the number of young carers identified and assessed by the local authority remains very low—particularly given that Surrey has around 16,000 children with an EHCP, many of whom will have siblings undertaking caring responsibilities who are not recognised or supported as young carers.

Young Adult Carers

The 2021 Census identified 215,365 young adult carers in England and Wales, representing 4.6% of the overall carer population. In Surrey, 3,420 carers aged 18–24 were recorded, accounting for 3.6% of the county’s carer population. This 1% gap below the national figure suggests that many young adult carers in Surrey either do not self‑identify as carers or do not recognise their caring role.

Surrey’s current Carers Strategy defines Young Adult Carers as those aged 18–25 years. However, many national organisations, including Carers Trust, The Children’s Society, and the All-Party Parliamentary Group (APPG) for Young Carers and Young Adult Carers, define young adult carers as those aged 16–25 years. This broader age range reflects key transition points at ages 16 and 18, when older young carers’ needs often change as they move into further education, training, employment and adulthood. As East and West Surrey unitary authorities develop their next Carers Strategy, it may wish to consider aligning with the national definition of young adult carers as those aged 16–25 years, to support consistency with national policy, practice and service provision. Any such change would also require consideration of current commissioning arrangements, which are presently aligned to the age of 18 and commission separate young carer and young adult carer services.

Feedback gathered through Luminus indicates that young adult carers often feel existing services and information are not designed with their age group in mind, leading to low engagement and limited uptake of group-based support. Local services also report that reaching and sustaining engagement with this cohort is challenging, with 211 carers aged 18–24 accessing services in 2025–26. However, increased partnerships with Further Education providers have begun to raise awareness of carers aged 16+, with more colleges appointing carer leads to help students remain in education and plan for their future.

National evidence highlights the significant impact that caring responsibilities can have on education and employment outcomes during this stage of life. The Government’s Young People and Work Interim Report (2026) found that 51% of young carers (aged 16-24) do not achieve five or more good GCSEs, compared with 36% of non-carers, while persistent school absence among young carers is 35%, around double the national average. Young carers are also substantially more likely to become NEET (not in education, employment or training): 23.1% of registered young carers and 9.8% of unregistered young carers were NEET, compared with 5.3% of non-carers. The report found that young carers who become NEET are also more likely to experience long-term disengagement, with 40% of registered carers and 31.3% of unregistered carers remaining NEET for more than 18 months. The report concludes that caring responsibilities can create significant barriers to educational attainment, attendance and progression into employment, while many young carers remain unrecognised by schools, employers and support services.

These findings are reinforced by evidence from the 2026 All-Party Parliamentary Group (APPG) for Young Carers and Young Adult Carers inquiry, which explored the lived experiences of young adult carers across the UK. The report (APPG Young Adult Carer inquiry report) found:

1. Young adult carers feel they have fewer life opportunities

2. They face major barriers to education

3. Significant financial disadvantage

4. Barriers to employment

5. Heavy caring responsibilities limit choices

6. Poor mental and physical wellbeing

7. Lack of awareness, recognition and support

Young adult carers said they need better support to manage their caring role, including:

• Financial support that works alongside education and caring: funding that doesn’t force a choice between studying and caring

• Flexible education and training: that can adapt to caring responsibilities.

• Better support into employment: realistic, supported routes into flexible jobs and training pathways.

• Recognition and identification: being seen and understood

• Consistent support through transitions (16–25): so they do not fall through the gaps” at transition points.

• Breaks from caring and wider support: time to themselves and support to manage stress

• Joined-up systems and a national strategy: whole-system approach to remove barriers.

The report found young adult carers face significant, overlapping barriers across education, employment, finances, and wellbeing, leading to unequal life chances compared to their peers. They consistently highlight the need for financial support, flexible systems, better recognition, and coordinated services so they can pursue education and careers without having to sacrifice their caring role or future opportunities.

It is recognised that a critical point in a carers journey is when they transition between services and becomes a young adult carer. Developed by The Children’s Society, The Young Carers Transition to Adulthood pathway tool is designed to make transitions planned, supported, and positive, so young adult carers don’t have to choose between caring and their future but can succeed in both. The transition to adulthood is a high-risk point where many young carers lose support or “fall through gaps” between children’s and adult services, leading to poorer outcomes. The tool aims to ensure young adult carers:

• Have clear plans and support during transition (not a sudden drop-off at 18)

• Can balance caring with education, training, or employment

• Receive the right level of support to reduce inappropriate caring roles

• Are supported to achieve independence, wellbeing, and future aspirations

• Are recognised, heard, and involved in decisions about their lives

The need for a Young Carer Transition Assessment is not currently being routinely identified in Surrey, representing a significant gap at a critical point when young carers are approaching 18, children’s services are withdrawing, and many are preparing to leave education.

Further analysis of the support needs of young adult carers studying at Surrey based universities would be beneficial, particularly to understand how caring responsibilities affect participation, wellbeing and attainment in higher education. Consideration should also be given to the needs of young adult carers who move away from Surrey to study and become distance carers, as they may face additional challenges balancing caring responsibilities, education and independent living while navigating support across different local authority areas.

Developing clear transition pathways for young adult carers should be a priority for Surrey. This would help ensure planned and supportive handovers to adult services, increase awareness of available support, and enable early identification of caring roles within employment, further education colleges, sixth forms, higher education and training settings, so that appropriate support and reasonable adjustments can be put in place.

Adult Carers

Prevalence and Identification

According to the 2021 Census, the proportion of unpaid carers has declined from 11.4% in 2011 to 8.9% in 2021. This decrease is partly attributed to changes in data collection, the impact of the pandemic, and improvements in population health reporting. Despite this overall drop, there has been a significant increase in the number of people providing intensive care—those giving 20 or more hours, and especially 50 or more hours, of unpaid care each week. This trend indicates that while fewer people are caring overall, those who do are taking on heavier responsibilities.

Health and Wellbeing

Mental health pressures among unpaid carers remain significant and, in several areas, have worsened year‑on‑year. National evidence aligns closely with Surrey’s Luminus findings. Carers UK reports:

• 35% reported “bad” or “very bad” mental health (up from 27% the previous year). Source: Carers UK, State of Caring – Mental Health Report, Feb 2025.

• 56% of carers in financial hardship reported poor mental health, versus 18% without hardship. Source: Carers UK State of Caring Survey 2024–25 (policy briefing dataset).

• 31% of those providing 50+ hours of care reported poor mental health, with risk rising by intensity. Source: Carers UK State of Caring Survey 2024–25.

• 43% of carers who left paid work to care reported poor mental health, compared to 35% still employed. Source: Carers UK State of Caring Survey 2024–25.

• 57% feel overwhelmed “often” or “always”; just 6% “rarely” or “never” feel overwhelmed. Source: Carers UK, State of Caring – Mental Health Report, Feb 2025.

These findings reinforce the urgent need for targeted, preventative support, particularly for carers facing financial strain, high‑intensity caring roles, and disrupted employment — patterns mirrored in Surrey’s local insight.

Access to services

According to the 2021 Census commissioned tables on unpaid carers and labour market status, 21.37% of Surrey carers are not in paid employment due to their caring role — lower than the national average (26.70%) and the South East regional figure (22.24%). Most carers in Surrey are of working age and balancing employment with caring responsibilities. Services must reflect this reality. One digital provider report that 63% of carers access support outside standard hours, and 80% do so via mobile phone—highlighting the need for flexible, out of hours provision. While digital exclusion will remain a barrier for some carers, this evidences a necessary shift toward offering carers genuine choice in how and when they access support.

Working carers

The State of Caring 2025 report shows the pressures facing working carers: 69% had not focused on their career as much as they would have liked, 35% had reduced their working hours, and 20% had moved from full‑time to part‑time employment. 74% were worried about the impact of caring on their future finances, and 24% had reduced or stopped pension contributions, indicating a need for there to be accessible advice on national insurance credits.  Working carers are likely to represent a major cohort whose needs should be central to future service planning.

Parent Carers

Parent carers provide substantial, unpaid care to children with disabilities, long-term conditions or mental health needs. They face significant emotional, financial and practical pressures. National evidence shows high levels of mental ill health, financial hardship, limited access to breaks, and systemic barriers to support. These challenges are reflected locally in Surrey, where an estimated 45,500 children and young people have additional needs, yet there is no reliable measure of the parent carer population.

Local insight highlights persistent issues including delays in diagnosis, lack of specialist input, difficulties securing Education, Health and Care Plans (EHCPs), and experiences of blame or misunderstanding from professionals. Parent carers report feeling unsupported in managing their own wellbeing, with many unaware of available services or struggling to navigate fragmented systems. There is also very limited data available on parent carer assessments, including waiting lists, levels of need, and outcomes during transition, making it difficult to fully understand the scale and impact of these issues. Only 106 parent carer assessments were completed in 2024–25, despite over 10,000 children meeting disability criteria, indicating that statutory duties are not being met and that many families may be missing out on support.

Respite remains a critical gap. Surveys show reduced short‑break availability, long waiting lists, and services that often do not meet the needs of children with complex disabilities. Parent carers describe being “on duty” constantly, with significant impacts on family mental health and children’s social development. Recent improvements—such as new drop‑in sessions, a mediation team, and an EHCP helpdesk—aim to strengthen communication, but many families still report inconsistent support.

Transition to adulthood is another pressure point, with parents feeling excluded from decisions once their child turns 18, often leading to a crisis. Overall, parent carers in Surrey experience high levels of stress, isolation and financial strain, and consistently call for clearer communication, more flexible respite, earlier intervention, and a system that recognises and responds to their needs.

CQC Local Authority Assessment (2024)

In November 2024, the Care Quality Commission (CQC) rated Surrey ‘Good’ overall but highlighted the need to embed carers’ perspectives more consistently in commissioning, performance management, and system transformation. Carers shared mixed experiences: some valued person‑centred support and the flexibility of direct payments, while others reported unclear or missing assessments that did not reflect their needs. Timeliness and consistency remain areas for improvement.

The CQC recommended further action to reduce waiting lists, expand respite options, review payment sufficiency, strengthen awareness of carers’ rights, embed carer advisors, and tailor assessment pathways for young and parent carers—shifting practice towards proactive and early intervention.

Surrey’s response to the CQC assessment

Reducing Delays and Improving Carers’ Assessments

Carers’ Assessments are key to understanding and meeting carers’ needs. Surrey Adult Social Care has improved staff training, introduced reflective practice, and strengthened quality checks. These changes have reduced average waiting times to 37 days and cut the number of carers waiting by 58%, meaning more carers receive timely support.

Supporting Carers from the Start

Surrey now prioritises early, proactive support. From first contact, carers receive clear information and advice and can be referred to support services and the new Carers Wellbeing Break offer. Communication about local and community support has been improved, helping carers access help sooner.

Embedding Carer Wellbeing

Surrey Adult Social Care is working to ensure carers’ wellbeing is central to all services it provides from the first contact. This includes early identification, tailored information, and consistent, high-quality support for carers of all ages.

Future Developments

Surrey is developing better online tools so carers can access personalised information at any time. Joint working with Children’s Services is being strengthened to improve pathways for young carers. Plans also include reviewing respite options, ensuring payments are fair, and embedding carer advisors so carers’ voices remain central to service development.

JSNA Recommendations: 

The following recommendations are drawn from the emerging themes in carer and stakeholder feedback, alongside local and national data. They apply to carers of all ages, with scope to tailor the emphasis for different age groups to reflect distinct points along the carer journey.

Theme 1: Knowledge & Understanding

1.a): Embed carer friendly practice across health, education and social care systems to improve professional awareness and early identification of carers

Mandate carer awareness training across the system; embed carer identification in frontline settings (GPs, schools, hospital discharge); Alongside training, ensure staff have the practical tools, confidence and system support needed to recognise carers, make reasonable adjustments and improve outcomes.

1.b): Value carers’ expertise and embed personalised support across diverse caring roles

Embed carers’ expertise in all decisions relating to the health and wellbeing of the person they support, spanning prevention, diagnosis, care, and treatment. Create co‑production panels that actively involve carers with different lived and professional experiences in shaping services. Broaden access to specialist advice and tailored outreach, ensuring carers who face barriers are supported to contribute and benefit equitably.

1.c): Strengthen system-wide data collection and recording

Track identification rates, service engagement, outcomes, and unmet needs. Improved data practices will enable more accurate monitoring, highlight service gaps, and support evidence-based decision-making to better meet the needs of carers of all ages.

Theme 2: Emotional Wellbeing

2.a): Make respite support visible, accessible, and inclusive

Promote break and respite options consistently across the health and social care system and into communities. Embed clear pathways for all carers—including self‑funders—with transparent information on costs where support is not funded through social services. Expand specialist respite provision for complex needs (such as dementia, autism, and mental health)

2.b): Embed carer wellbeing into all services

All services should treat carer wellbeing and resilience as a core responsibility, routinely checking in and signposting carers to appropriate support. Shift from crisis‑driven contact to proactive engagement, encourage the development of emergency plans, and ensure carers of all ages are supported to sustain their health and resilience in their caring role.

Theme 3: Caring & Life Balance

3.a) Strengthen carers’ ability to balance education, work, health, and caring roles

Promote carer‑friendly education, health and employment practices with reasonable adjustments e.g. recognising non‑attendance linked to caring responsibilities, flexible appointments scheduled at times that is most convenient for carers, flexible working, carer’s leave, and return‑to‑work support.

3.b) Reduce the risk of carers taking on disproportionate responsibilities
Deliver timely, holistic assessments for carers of all ages, with outcomes communicated clearly and used to inform coordinated support planning. Promote system-wide collaboration across health, social care, education, and community services to identify and respond to carers’ needs at an early stage. Ensure robust safeguarding and multi-agency information-sharing arrangements are in place to prevent young carers from assuming inappropriate or excessive caring roles and to protect their wellbeing and future opportunities.

3.c): Promotion of the universal offer for carers

Ensure carers are informed about the free support available through the Universal Offer, and where a Carer’s Assessment applies (for the carer, and if necessary, for the cared‑for). Be transparent that some services may be chargeable (subject to financial assessment), so carers understand both entitlements and potential costs.

Theme 4: Signposting & Information

4.a) Strengthen early identification, self-identification, and tailored information for carers
Embed carer identification and self-identification opportunities across health, education, and social care settings through routine enquiry, referral pathways, staff training, and practical toolkits. Develop or enhance co-produced carers’ information with timely, accurate, and locally relevant content, including condition-specific guidance in multiple formats.

4.b): Expand personalised navigation and specialist advice

Increase access to carer advisors and navigators offering flexible one-to-one support (face-to-face, phone, digital, and home visits). Create pathways and provide specialist information for carers supporting people with complex behavioural, mental health, or neurodivergent needs, co-developed with clinical teams and carer organisations.

4.c): Improve access to rights, advocacy, and age‑appropriate resources

Deliver accessible guides and workshops on carers’ legal rights, entitlements, and employment protections, partnering with advocacy and advice organisations. Develop tailored, age-appropriate resources e.g. for young carers and young adult carers, in education, employment, and at transition stages, using digital formats, peer-led content, and links to youth services.

4.d): Improve hospital discharge pathways

Ensure carers are fully embedded in discharge planning, with clear and accessible pathway guides. Carers must be informed, supported, and confident in their role post-discharge, ensuring carers continue to be willing and able to care for the cared for following discharge.

Carer and stakeholder feedback on Recommendations:

Carers

Carer feedback on the recommendations was gathered by Luminus between March and May 2026 through facilitated discussions with 42 carers across four established groups: a parent carer group in Redhill, a mental health carer group in Spelthorne, and Action for Carers hubs in Epsom and Guildford. The engagement included carers who had participated in the original 2025 workshops as well as carers new to the process, providing a broad range of lived experiences. Carers were asked for their views on the draft JSNA recommendations, with discussions focusing on clarity, feasibility, and the realities of caring.

Carers agreed with the recommendations in principle but raised strong concerns about implementation and accountability, emphasising the need for clear ownership and visible change. Carers used the recommendations as an opportunity to share their lived experiences, illustrating the challenges the recommendations are intended to address. Their responses focused less on the wording of the recommendations and more on the realities of caring, the barriers they face, and the changes they need to see in practice.

Some carers initially interpreted the early recommendations as actions for carers themselves rather than for professionals, highlighting the importance of framing these as system responsibilities. Across all groups, carers described feeling invisible at key points such as diagnosis, hospital discharge and transitions, and reported that their expertise is not consistently recognised by professionals. Carers also highlighted limited awareness and confidence in respite options, significant emotional and administrative burden, challenges balancing work and caring, and inconsistent access to navigation support. This feedback reinforces the need for earlier identification, clearer information, personalised support, and system‑wide cultural change.

Stakeholders

• Stakeholders were broadly supportive of the recommendations and felt they reflected the right strategic direction for Surrey, particularly around system culture, identification, wellbeing and accountability.

• Impact of the previous JSNA was highlighted.

• Concerns were raised that the recommendations draw on a relatively small and already‑engaged sample of carers, with limited visibility of carers who are not known to services.

• Stakeholders felt the recommendations would be strengthened by clearer differentiation between carer groups, including parent carers, young carers, young adult carers, and carers with protected characteristics.

• Transitions (e.g., primary to secondary school, post‑18, education to employment) were seen as insufficiently visible and should be elevated as a cross‑cutting priority.

• Advocacy and navigation were identified as critical enablers, with stakeholders emphasising the need for stronger visibility of advocacy and a single point of contact to reduce fragmentation.

• Individual stakeholders reinforced the importance of early carer identification, reducing stigma around the term “carer”, and ensuring that existing funding streams (e.g., PHBs, disability funding) are used effectively.

• Stakeholders stressed that support should extend beyond state‑funded services to include privately funded health, education and care settings, where carers may also need guidance and monitoring.

• There was support for strengthening carer‑friendly employment, with a request for clarity on whether this applies only to the care sector or also to wider employers and corporates.

• Stakeholders encouraged clearer prioritisation, outcomes and metrics, including implications for workforce capacity, commissioning and partnership arrangements.

• Carer Action Groups highlighted the need for better coordination across localities to maintain a unified voice for carers across Surrey.

• Specialist welfare benefits advice and information must be prioritised as a core strategic component of future planning, given its recurring importance across the JSNA and its role in mitigating financial vulnerability.

• Overall, stakeholders welcomed the ambition of the recommendations but felt they would benefit from further refinement to maximise credibility, reach and impact.

Using the JSNA and feedback to shape new unitary Carers Strategies

All feedback on the recommendations from carers and stakeholders will be shared with the new unitary authorities as part of the LGR handover. Together with the JSNA, this feedback will form a core part of the evidence base for each unitary's new carers' strategies, which will be co‑designed in partnership with carers and stakeholders. Feedback will also contribute to the safe and legal transfer of services and contracts, ensuring that carers’ priorities are embedded throughout the transition.

Annex 1

Annex 2

Unpaid carers insight for the Joint Strategic Needs Assessment (JSNA) chapter

Luminus Recommendation feedback