Caring in a complex world: perspectives from unpaid carers and the organisations that support them

This content relates to the following topics:

  • Unpaid carers provide significant levels of support to family or friends – equivalent to 4 million paid care workers. Carers often need support with their own health and wellbeing, but they are not always able to access this.
  • To understand the current picture of local support available for unpaid carers in England, we interviewed commissioners and providers of support to unpaid carers and ran focus groups with unpaid carers in four areas of England, spoke to national stakeholders and reviewed existing literature and national data sets.
  • Many carers told us that access to good health and social care for the person they are caring for is vital for their own quality of life. The impacts of ongoing funding issues and the health and social care workforce crises on carers and local support services were highlighted multiple times in our research.
  • To better support unpaid carers locally, commissioners and services need to develop and maintain a good understanding of their populations, build local support offers accordingly, and embed awareness of carers in strategic-level and commissioning decisions. Carers are a hugely diverse group – both in terms of who they are and who they care for – but policy and services do not always reflect this diversity.
  • Carers play a vital role in co-ordinating the care that is received. To reduce the burden on them, it is important for health and social care systems to be as integrated as possible. There are opportunities to align approaches to supporting unpaid carers at integrated care system (ICS) level as well as place level.

Why we did the research

Unpaid carers – anyone who provides care, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction and cannot cope without their support – play a key role in the health and care system. Caring can be a big commitment and carers themselves also need support with their own health and wellbeing. Yet, it’s also clear that carers are not always able to access the support they need. We set out to understand the current picture of local support available for unpaid carers in England. We looked at what evidence is available for different types of support, what carers and professionals involved in commissioning and delivering services for carers prioritise, and what are the barriers and facilitators of access to these different types of support.

What we did

We reviewed existing literature, research and national datasets, and talked to key stakeholders: organisations who support and work with unpaid carers. We gathered insights on what’s happening in local authorities in relation to types of services provided for carers, any different models or variations in these types of services and examples of good practice. We then chose four local authority areas that were identified as having approaches that others could learn from in their support for unpaid carers. In each area, we spoke to local authority and voluntary sector professionals involved in commissioning and delivering this support. We wanted to explore the reasons for local service patterns, commissioners’ and service providers’ priorities, and identify evidence of impact and any transferable learning. We also worked with local carers organisations to convene focus groups to hear from people who have lived experience of providing informal care to family or friends. We asked about the support available for carers in their area, what is important to them and what the barriers or facilitators are to getting support.

Differences in how ‘carer’ is defined may affect the number of people who identify as carers. The 2021 Census found that 4.7 million people were caring. Of these, 1.7 million provide less than 9 hours of care a week, while 1.4 million provide 50 or more hours of care a week. It’s important to highlight the diversity of the many people who are carers – both in terms of their own characteristics, and the kinds of care they provide.

A graphic, entitled :'Who are people caring for'. The answers include: Mother or mother-in-law (34%); Husband, wife or partner (18%), and more. There is also the question: 'what tasks are carers performing?'. Answers include: Keeping people company (69%); Keeping an eye on them and other practical help (67%); Physical help (34%); Giving medicines (30%) and more.

What we found

We developed a ‘taxonomy’ of the different types of support available to carers, and all of these types of support were offered in some form in our four local authority areas. But we also found that it is not possible to reliably identify good or poor practice from existing data sets, and consistent data collection and resource to understand and monitor meaningful outcomes for carers is a work in progress. However, we developed four insights based on what local people – professionals and carers – told us was important to them in terms of supporting unpaid carers locally. We hope they indicate some potential ways forward to improve support for unpaid carers.

To better support unpaid carers locally, commissioners and services need to develop and maintain a good understanding of their populations. This can be facilitated by supporting local professionals to identify and point carers to available services, meaningfully measuring the impact of support and engaging with local carers.

Local support offers should be built on this understanding. Commissioners and providers of services for unpaid carers need to actively develop awareness of their local support offers among unpaid carers, at the same time ensuring support is appropriate and accessible, as well as inclusive of diverse populations. Carers are a hugely diverse group – both in terms of who they are and who they care for – but policy and services don’t always reflect this diversity.

Awareness of carers needs to be embedded in strategic level and commissioning decisions. Professionals who ‘get it’ and advocate consistently are vital. But the work can’t just rely on a few committed individuals – system-level carers’ partnerships and strategies have a key role in advocating and embedding the carers agenda.

The impact of wider health and care issues on carers cannot be ignored. The impacts of ongoing funding issues and the health and social care workforce crises on carers and local support services were highlighted multiple times in our research. Workforce shortages in particular are directly impacting on carers health and wellbeing because they are the ones left to fill in the gaps.  

Wider reflections

The four local authorities we spoke to for this research were clearly highly engaged with carer issues and had given wide consideration to their statutory duties and how they would meet them. However the thought and effort that had been put into carer support did not always translate into the support that carers wanted. At several points we noticed a disconnect between what professionals in the statutory sector were aiming to deliver, and unpaid carers’ experiences of support and services.  

Access to good health and social care for their loved one is a vital issue affecting quality of life for many carers, and so the wider social care context is critical. Carers said they often had to learn about how the ‘system’ worked in order to be able to navigate it successfully, suggesting a wider potential role for carers’ organisations in supporting carers to advocate on behalf of the person they care for.

ICSs are key emerging forces in supporting unpaid carers. Carer support directly involves health as well as social care so there are opportunities to align approaches to supporting unpaid carers at ICS as well as place level. This will need leadership who understand the value of carers to the working of the wider system.


Shirin Shahid

Community Outreach Lead,
Healthwatch Leicester & Leicestershire
Comment date
16 November 2023

It is good know what is happening and what support is available for unpaid carers but still there is funding issues for on going support. Just having one of session is not good enough for unpaid carers. They need something regularly happening within their location e.g. transport and affordable. They need to talk to someone when they feel low mod, stress or having difficulties.

Chris Sterry

former Family Carer,
Comment date
30 May 2023

I am now a former family carer and was a family carer for some 39 years.

In 1984 I met my wife to be and joined her single parent family of 2 daughters, the elder having many conditions, multiple physical disabilities, a sensory disability and severe learning disabilities due to cerebral palsy. She also had Arthritis and later received a diagnosis of Autism. Before I arrived my future wife was caring for her elder daughter with some help from her younger daughter and also an elder son, but by the time I arrived he had left to be married and have his own family.

I came not knowing anything about disabilities, let alone Learning Disabilities, so for some many months I was observing how my wife was dealing with situations and helping as I could and also going to meetings with my wife on matters relating to her elder daughter. For some good few months I just observed at these meetings, not wishing to interfere as I didn't wish to make any mistakes and make any situation worse. But it soon became clear that this was a system through our local authority, (LA) that was not working as good as it should be. One meeting my wife was not able to attend so I went on my own and it was clear how I was made to feel that I was someone who knew nothing and be 'putty' in their hands, but as soon as the meeting commenced I took each person present to task and mentioned what I thought of proceedings, after that they never ignored me again.

During this time we were offered respite care, which we accepted, but in many instances we were far from happy with the care being given, so we went from one respite provider to another until we exhausted the providers available. So we withdrew from respite care completely.

But as I was working at least 5 days a week my involvement was not as great as I wished, except for evening and weekends. Around 2008 my wife's health started to deteriorate slightly and we contacted our LA for assistance and we were offered 6 hours care per day between Mondays and Fridays and we advised that 2 persons were required for each 6 hour period so they could work together so, in affect we were given not 30 hours but 60 hours per week. We decided to take up the offer and to do it by employing the carers ourselves rather than through a provider and this was funded by a Direct Payment from our LA which I managed completely except for payroll which was arranged through a provider. We did our own recruiting and to some extent this did work, but not completely. We both knew the degree of quality care we wanted for our daughter and some we were employing did not fully deliver, so they were dismissed and replaced.

During this time I had the opportunity to reduce my working days to 3 days, so had more time to help my wife and supervise the care being given.

However, my wife's health continued to decline and we contacted our LA for more care this time similar 6 hour shifts for Saturdays and Sundays and this time with a provider who had their own wheelchair accessible vehicle meaning the carers could take our daughter out for lunch on both Saturdays and Sundays.

Eventually my own health started to deteriorate and my wife's further, so around 2015 we asked our LA for more care and were granted 24/7 care in our own home, which we received from another care provider. We retained the provider already giving 6 hours on Saturdays and Sundays and the persons we employed for 6 hours Monday to Friday. But the rest of the 24/7 we went to a different provider, our first choice soon became apparent was not suitable so we changed to another and this time the provider was excellent, providing carers who they thought would work well with our daughter and also ourselves, most did but some didn't so the provider provided new persons until the full team was very suitable.

During this time my health deteriorated so I had to take early retirement.

My wife eventually succumbed to her health problems and she died in September 2020, but with the excellent carers we had my daughter was able to be looked after at home and to some extent the carers were also there for me and helped with my loss of my wife.

During all this while the carers looked after my daughter I was sharing my experiences of being in the care system with my LA and health authorities as well as many local disability charities and our local healthwatch.

Although the care for my daughter was excellent she eventually succumbed to her health problems and she too died October 2022.

This meant the carers were no longer around and for the first time in my life at 73 I was on my own, as my wife's remaining family was in Greater Manchester and myself in South Yorkshire, distance only around 40 miles, but travel in-between was so bad, especially during Winters. However, a WhatsApp group for the carers and myself was created and so we could still keep in contact and when they can they still visit me, but mostly through WhatsApp.

I have to some extent still continued with my access to organisations and so still come forth with my experiences over the years. This I do in many instances as a 'critical friend', as I am not one who keeps quite, I didn't while my daughter was alive so why should I now, for there are still many areas, especially in social care and some in health were some large improvements have to be made.

Much is down to finance, but there are so many insufficiencies of staff, poor working conditions, and the rates of pay for care workers is so very poor. In reality they should be earning £14/15 per hour as a starting point and not the current of around £11 per hour.

Many systems are so inappropriate and so need to be challenged. However, the biggest challenged is for a listening and active government, one which I have never seen and one I don't see coming anytime soon, no matter what colour of Party it will come from. For no one is prepared to look at social care and do exactly what is required, which is immediate financing of Social Care some say £8 billion, but it is much nearer £12 billion and that can't wait, especially to 2025. Yes, the NHS needs some financing, but if social care is not looked after it will disappear and so with it, soon after the NHS.

I believe social care will not last until 2025 and if it does, it will be so far gone, it will not be saved, so if so, the outlook for the NHS is far from promising.

I will most likely not be around, but many of you will be and it is your future, a future that of as now is not very promising.

I so wish you all well for without a listening and action taking government you will so need it.

Eleanor Levy

NHS public advisor,
Comment date
30 May 2023

The role of carers in supporting mental health seems under-appreciated

N Grant

Comment date
27 May 2023

Signposting ends with signposting signposting signposting. Ridiculous. No help.

Cannot see coverage of implications to unpaid carers when they stop carer. Those same agencies and others then fail, abuse, harm, ill and even put people in crises and into realms of suicide.


We are Victims.

New deal for carers past and present required

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