Why nurses must help unpaid carers to understand their rights and access support

Fiona Rogers, nursing programmes manager innovation and carers champion, at the Queen’s Institute Community Nursing (QICN) highlights the opportunity to make a difference to unpaid carers this Carers Rights Day

Carers Rights Day

Carers UK’s theme for this year’s Carers Rights Day on Thursday 20 November 2025 is ‘Know your rights, use your rights’. This annual day recognises all unpaid carers, including young carers, raises awareness of the rights they are entitled to and helps them access support.

This is an ideal time for all nurses working in the community and primary care to reflect, identify and support unpaid carers of all ages.

Unpaid carers

An unpaid carer is a child, young person or an adult who supports or cares for a family member, friend or partner due to their illness, frailty, disability, a mental health issue or addiction. They provide an invaluable and often unnoticed contribution to society.

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Primary care and community nurses working across the life course in various fields of practice are ideally placed to identify, support, signpost and provide the recognition that unpaid carers deserve. There are 5.8 million unpaid carers in the UK, saving the NHS £445m a day (King’s Fund, 2023).

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Caring is a social determinant of health, and the recently published State of Caring Report (2025) identified that: 42% had physical health problems, 20% had sustained an injury, 35% reduced their working hours, and 49% had reduced essentials, such as food, heating, clothing, and transport.

Many people juggle work and unpaid caring including 32% NHS employees who report being a working carer (Nuffield Trust, 2024).

Young carers

The 2021 census recorded 120,000 young carers in England and 8,200 in Wales. These figures for young carers are disputed, with many young carers remaining unrecognised and consequently unsupported.

A young carer can wait many years to self-identify or be identified as a young carer. In 2023, schools were tasked with recording the number of young carers on their school census: 72% of schools recorded having no young carers. This was contrary to local and national intelligence, demonstrating that more work was needed with schools and education professionals to identify young carers.

This is unacceptable, knowing the health inequalities young carers face and the impact on their education. Children under the age of 8 are also known to provide care.

All community nurses, including district nurses, health visitors, school nurses, and children’s community nurses, need to be conscious of this, and be vigilant in identifying young children assuming a caring role within their families.

Access to support

Unpaid carers’ access to health and social care for the person they are caring for is essential and critical in maintaining their own health and wellbeing; this does not always happen. With the reduction of local budgets and services trying to deliver ‘more for less’, staffing shortages and inconsistency of service provision led to unpaid carers ‘plugging the gap’ at the expense of their own health.

Local authorities have statutory responsibilities to support unpaid carers, including providing carers assessments in adults and assessment of needs (or similar) in children and young people. Local authorities or local carer services may be commissioned to conduct these.

Nurses should know who conducts these assessments locally and how unpaid carers and young carers can access them, and to provide support to access them if necessary. These links may be useful: Find your local council – GOV.UK or Find Your Local Young Carer Service | The Children’s Society .

Support is not a ‘one size fits all’ and a personalised care approach should be adopted, acknowledging that the knowledge, skills and experiences of every unpaid carer or young carer are different.

Young carers are often ‘mature for their years’ and may have been the sole carer for some time, and this requires respect. Often, just a question or two can reveal what is happening at home and become a lifeline.

Family-centred approach

General practice nurses work across the life course and are perfectly positioned to adopt a family-centred approach. During long term condition management, conducting health checks, delivering immunisations, screenings or supporting patients with learning disabilities or dementia can all be opportunities to start a conversation around carers and caring.

Community nurses are the ‘eyes and ears’ of health in the community, seeing families in their own homes, hearing and witnessing family interactions, perhaps seeing a child absent from school, hearing references to a caring role, or witnessing a translator role.

Adopting a family-centred approach involves the whole family, focusing on family wellbeing, building resilience and can benefit the child or young person, recognising their caring role, preventing inappropriate caring and connecting the family to community assets and could prevent a child or young person taking on caring responsibilities.

Challenges

Coding in primary care is inconsistent, with multiple ways to record unpaid carers. In 2022, NHSE introduced SNOMED CT codes for unpaid carers to try and simplify and standardise this.

Local services vary in their ‘offer’ to unpaid carers and young carers; this can also change depending on funding and political influence. Understanding the needs of individuals is paramount, recognising that every unpaid carer’s journey is unique.

The Health and Care Act 2022 places a duty to involve unpaid carers or all ages in discharge planning as soon as feasible. Anecdotal evidence demonstrates this is patchy, and there is room for improvement in discharges into the community.

The number of nurses including district nurses, health visitors, school nurses and learning disability nurses is declining too alongside an ageing workforce, and a recruitment and retention gap.

Opportunities

Adopting a system-wide approach to unpaid carers of all ages enables carers to be identified, recognised, and supported is essential. Primary care and community nurses collaborating with other health colleagues and stakeholders hold the key to the success in reducing the inequalities unpaid carers face. Across the life course, opportunities exist in all fields of practice. The NHS 10 Year Health Plan, moving care from hospital to community, must ensure unpaid carers are identified and supported early. The shift from analogue to digital opens opportunities for innovation alongside the treatment to prevention shift, providing a focus on the health and wellbeing of unpaid carers and young carers.

Call to action

As highly trained and skilled professionals, nurses are ideally placed to not only make a difference but be the difference and support all unpaid carers, including young carers, to understand their rights and access the support they are entitled to.

Fiona Rogers is nursing programmes manager at the QICN