What four things are carers telling us about health and social care?

Unpaid carers make an invaluable contribution every day, often supporting family members, friends or neighbours while balancing their own health, work and wellbeing. Yet many still face significant challenges accessing the information, support and services they need.

The 2021 Census showed almost one in ten people in England aged five or over were providing some level of unpaid care. According to Carers UK, unpaid carers provide care worth £184.3 billion per year, and 52% of carers they surveyed in 2025 said the amount of time they spent caring had increased compared to the previous year.

Many people who support a partner, family member, friend or neighbour do not think of themselves as unpaid carers. They simply see it as part of everyday life. As a result, some miss out on advice, financial support and services because they never realise help is available.

Our latest insight looks at what unpaid carers have told Healthwatch North Yorkshire about their experiences. Their feedback highlights four recurring themes:

• Knowing where to get help and support
• Navigating social care
• Accessing healthcare
• The wider impact of caring

What issues do carers have with knowing where to get help and support?

Many carers told us they often feel left to coordinate care themselves, without clear information about what support exists or who they should contact. For many, the emotional burden of caring is made even harder by uncertainty about where to turn when they need help.

Recognising yourself as an unpaid carer is often the first step towards getting support. However, many people told us they did not realise they were entitled to help or were unsure where to find it.

One unpaid carer supporting their husband with Parkinson's disease described how isolated they felt.

"It feels like the burden of care is on myself to try and get help for him and I feel very vulnerable and isolated. I live in dread of becoming seriously ill as I don't know what would happen either to myself or my husband."

We also heard from carers from ethnic minority communities who said they were often unaware of the financial support, carers' assessments and other services available to them. Instead, many relied on family members, faith groups or community organisations for advice.

"Some people don't know they can claim support as unpaid carers. Even when they find out, they may feel worried about claiming it."

These experiences suggest that better information alone is not enough. Carers need support to be actively promoted, particularly to communities who may be less aware of their rights or reluctant to ask for help.

What difficulties are there with navigating and getting social care support?

The Care Act 2014 gave unpaid adult carers the right to a local authority assessment of their support needs. If their needs meet national eligibility criteria, the local authority has a duty to provide support. They can do this either by directly supporting the carer or by providing help to the person they are caring for – respite care, for example.

From 2023/24 to 2024/25, there was a big increase in the number of unpaid carers who needed support, according to research by ADASS. Over two in five Directors of Adult Social Services in England (41%) saw an increase of more than 10%.

Several carers described feeling excluded from decisions, despite being responsible for providing day-to-day care.

One carer told us:

"They completely ignore me. I am not informed as to my partner's progress, any likely outcome, what kind of discharge we can expect and what support."

Others described spending significant time chasing different organisations, repeating information and trying to coordinate services themselves.

Rather than feeling supported by the health and social care system, many carers felt they had become the people responsible for holding everything together. This uncertainty adds unnecessary stress at what is often already a difficult time.

Can carers get healthcare for themselves and the person they are caring for?

In 2014, NHS England set out 37 commitments to improve access to and experiences of care for unpaid carers. These include training healthcare staff to ensure they are aware of carers’ needs, and publishing examples of best practice in general practice. This means carers can ask GP practices to note on their record that they are an unpaid carer, so the practice can give appropriate advice.

However, the 2024 Darzi review found that unpaid carers don’t get the support they need from the NHS. This was a clear theme in the feedback we looked at. 

We heard that carers faced difficulties booking GP appointments when their practice insisted on them ringing or visiting the surgery at 8am to book one. This was a particular issue if carers needed to be awake during the night to care for their loved ones.

Some carers told us they struggled to access appointments for themselves because appointment systems did not reflect the realities of caring responsibilities.

One respondent explained:

"When I ring I can never get through to talk to someone so I have given up. Making appointments in person should be reinstated."

The same carer described delaying treatment for her own health while trying to support her husband with Parkinson's disease.

We also heard examples where carers felt they were not listened to or involved appropriately when supporting someone with complex needs.

One respondent supporting a family member with learning disabilities and autism told us:

"The practice behaviour towards a person with learning disabilities... is a disgraceful dereliction of duty. We hope our experience leads to change."

In rural parts of North Yorkshire, travel to appointments was another common issue. Carers described long journeys, difficulties finding disabled parking and appointments that could have been delivered closer to home or remotely.

In our recent patient transport work, we also heard from carers worried about how they would continue getting loved ones to hospital appointments following changes to NHS non-emergency patient transport. Some described long journeys, limited public transport and rising costs adding to the pressures of caring, particularly in rural areas.

Together, these experiences suggest healthcare services need to do more to recognise carers as partners in care, communicate with them effectively and ensure appointment systems are flexible enough to meet their needs.

How does being an unpaid carer impact people’s lives?

Research by Carers UK shows that the impact of caring can have a substantial impact on all aspects of unpaid carers’ lives. This includes their finances, physical and mental health, ability to work and their personal relationships.

One unpaid carer said:

"It feels like the burden of care is on myself. I feel very vulnerable and isolated."

Another respondent described reaching crisis point after struggling to cope with caring responsibilities alongside concerns about the care their loved one was receiving.

"This has caused so much stress that I am now suicidal. I am entirely alone."

While every caring situation is different, many people described feeling invisible within health and social care services. Instead of feeling supported, they often felt they were expected to coordinate care, advocate for loved ones and manage increasingly complex situations on their own.

What could help support unpaid carers?

The experiences shared by unpaid carers paint a consistent picture of services that often feel fragmented, difficult to navigate and insufficiently responsive to carers' needs.

While carers play a vital and increasingly important role in supporting health and social care, many continue to face barriers in accessing clear information, practical support and recognition from services.

When support works well, it can make a significant difference. However, without better identification of carers, clearer communication and easier access to help, caring responsibilities can seriously affect people's health, wellbeing, finances and relationships.