Moving in circles: supporting carers navigating the care system

Family members and friends who care for loved ones are the backbone of the UK care infrastructure. There are at least 5 million of these ‘carers’ – vastly more than the 860,000-strong paid care workforce (ONS, 2023; The Kings Fund, 2024). This report presents new, in-depth evidence of the role played by these unpaid family/friend carers, specifically regarding the ‘indirect’ tasks they perform, such as project management and medical advocacy, and the ways in which they plug gaps in the paid care system. In some cases, these functions could be replaced by improved and better-funded services. In others, the positions of these family/friend carers as long-term loved ones of care receivers provide an irreplaceable utility that deserves recognition and resources.

Below is a summary of the key findings of the report.

Sixteen carers in England and Wales were recruited in summer 2024 and kept a diary for 12 weeks. This was followed by in-depth interviews. Using thematic analysis, we discovered the following insights.

Carers spent between 6 and 220 hours on ‘indirect’ care tasks over the 12 weeks:

• At the lower end of the range, carers who reported low amounts of indirect care often lacked external support – there was no project management to perform because they were alone and unsupported.
• At the higher end, tasks included supervising and liaising with paid care providers; administrative tasks, including those pertaining to medication, equipment, appointments and benefits; and engaging with their loved ones’ medical professionals.
• A substantial proportion of these activities was necessitated or intensified by poor system design, including poorly implemented digitisation, reactive (instead of proactive) medication and equipment supply processes, and circuitous bureaucratic systems. All these were underpinned by under-staffing at the institutions with which they engaged.

The research reveals a potential misunderstanding about how care functions for family/friends once paid care workers are in place. For some carers, receipt of paid workers marked a transition from hands-on ‘direct’ care to managing the direct care. Others were also providing high amounts of direct care alongside paid workers. Thus, policy-makers and the public should not assume that care provided by workers will remove care provided by unpaid loved ones.

Carers’ long-term knowledge of the care receivers enabled them to ensure:

• appropriate medical treatment by acting as living repositories of their loved ones’ medical histories
• person-centred care by supporting paid care workers to understand their loved ones’ needs and preferences where care receivers were less able to do that themselves.

Carers plugged the gaps in the paid care system by:

• supporting paid care workers when there were too few, or under-trained, staff, particularly when care receivers required 2 people or during staff absences
• stepping in when their loved one’s condition fluctuated in ways which planned services could not accommodate
• providing entertainment and engagement, ensuring quality care beyond the basics.

Because they were required to plug these gaps, carers reported a detrimental impact on their quality of life: they were unable to make plans, and, for carers who were also employed, they were overwhelmed by an unsustainable juggle of work and care masked as ‘flexibility’ and reliant on uncodified goodwill from employers.

Norman cares for his wife, he wrote in his diary:

“This week has been an ongoing nightmare. There is no continuity of care. It is exhausting and stressful. The wear and tear of just trying to cope with looking after my wife and then dealing with the NHS is exhausting. I feel like screaming.”  

Philippa is 86 years old and cares for her son who is 60 years old and has brain damage. She wrote:

“I wish that we did not move in circles, constantly reinventing all the evidence of months ago! Where did spare time go?”

Emily cares for her 26 year old daughter who has Chronic Fatigue Syndrome, she wrote in her diary:

“we have reduced our lives, we’ve distilled it down to the lowest level of everything really… We work at a different pace to the rest of the world… The hardest part of her condition is not knowing at any point whether it will be safe to leave her alone even for a short while and that makes it impossible to make any plans.”   

Carers were mental health first aiders, even where their loved one did not have a formal mental health diagnosis. They felt that this role, and the anxiety of their loved one, was not taken seriously by medical professionals. At times, this led to unnecessary increased costs to the public purse due to eventual police or medical intervention.

Josie cares for her 16 year old daughter, she told us:

“we haven’t heard anything from CAMHS for ages. It’s sort of like if you don’t keep on and on, they just disappear. And we’ve had that over the last few years. People coming in and offering help and saying, she’s going to get this and we’re going to do that, and then all of a sudden they’re gone.” 

Nine out of the 15 carers who completed the study reported that their loved ones preferred to receive kin-based care (or no care at all), rather than be supported by paid care workers. Carers themselves also reported finding it difficult to accept paid workers in their home and the transition from ‘home’ to ‘workplace’.

Lisa shared this experience of caring for her mother:

“Mum had a new live-in care worker [last week] as she is difficult to manage and so they are rotated for their own well-being. Mum phoned many times in a very distressed state making complaints about her care worker (leaving her without her nappy on and going out for hours) – once investigated, these turned out not to be true and mum realised she had one on (nappy) and her care worker was on a scheduled break. This took hours of phone calls to unpack the situation. Manager informed me my mum is one of the most difficult clients they have, which was hard to hear emotionally… I was left panicked and mentally exhausted, I had spent a whole afternoon on the phone again to the agency and the care worker and to mum – did not do any work. This is a regular occurrence. New care worker started this weekend.”

She went on to write:

“She refused a lot of care [workers]… sometimes she wouldn’t let them in. There was a key box outside the house, but she would leave the key in the door so that they couldn’t get in. Sometimes she would just send them away and say, oh, there’s nothing for you to do, just take the recycling out … I’d organize equipment to be delivered to the house and she’d send them away… I would get very irate professionals saying ‘we had an appointment booked to show the care worker how to use this’, and she sent them away.” 

Ultimately, the message of this research is 2-fold: we have a health and social care system which is failing carers and generating needless suffering. And we have clear, practicable opportunities for change, in both the short and long term.

From a carer perspective, the health and social care system is poorly designed: it is fragmented, under-resourced and unable to accommodate the material complexity and unpredictability of caring needs. Furthermore, the ongoing failure of policy-makers and politicians to recognise the role of carers in the health and social care system hampers intelligent service design. As this report demonstrates, without carers, the UK health and care system simply does not function. Care policy does not pertain solely to professionals and paid care workers; it is a twin interlocking system of them and family/friend carers. Any future approach to care policy which omits the role of unpaid family/friend carers will fail to understand how care occurs and what family/friends do therein. 

The policy recommendations laid out in section 5 require these 3 pre-conditions to be as effective as possible:

1. The Treasury must commit to an evidence-based funding approach for health and social care. Under-funding sits at the root of many of the problems and frustrations described in this report. Without sufficient resourcing, most changes will be sticking plasters at best and will likely fail to be implemented effectively. 
2. The Government must end the ‘groundhog day’ approach to care policy. The UK is stuck in a repetitive cycle of unspecific, unfunded promises and little transformative action. This Government could and should make history by setting out a coherent, funded, cross-departmental and timely ‘national care strategy’ to achieve meaningful change by the end of its term. While some areas need further investigation, the UK has enough evidence and enough ideas to move forward on many problems now. 
3. The Labour Government has committed to introducing a ‘National Care Service’ (NCS), ‘underpinned by national standards… with a principle of “home first” that supports people to live independently’. As this report shows, paid care does not function in a silo but is deeply interconnected with unpaid care. The Government must learn about and understand the role of carers to ensure that any NCS programme contains provisions for them alongside paid care workers. It is unlikely these goals will be achieved without coalition-building across the affected stakeholder groups. Spaces must be created that foster dialogue and understanding between carers, care workers and care receivers, enabling alliance-based campaigns and victories which work for all.

This report focuses on the experiences of unpaid family/friend carers, rather than of care receivers or paid care workers. As such, these recommendations should be considered alongside those offered by the publications and spokespeople representing those stakeholder groups. 

Improving the partnership between carers and the NHS 

Recommendation 1: The General Medical Council, higher education institutions and other relevant bodies should take action to improve medical professionals’ understanding of the experience and role of unpaid carers.

This report raises concerns regarding medical professionals’ understanding of carers’ roles. While the General Medical Council provides some limited information for medical staff to support their interaction with carers, more work is needed to:

•    embed carers’ experiences and roles in medical curricula
•    improve relationships between the carer and medical communities.

Research should also be carried out to ascertain whether medical professionals’ attitudes towards carers are shaped by various factors – such as the characteristics of the carers, the seniority of the medical professionals and so on – with tailored interventions designed as a result.

Recommendation 2: The Department of Health and Social Care (DHSC) should embed ‘carer navigators’ into medical and community care institutions.

Carers need better access to support and to understand their entitlements, alongside better channels for liaison with medical and other professionals. To achieve this, medical and community care institutions should introduce ‘carer navigators’: professionals who can identify and support carers in those settings. In particular, these should be embedded into the Government’s planned ‘neighbourhood health centres’. To design and implement this service, the Government should learn from the pioneering Carers’ Clinical Liaison Service introduced at Kingston Hospital in 2023 (South West London ICS, 2023). 

Recommendation 3: Government and medical institutions should assess opportunities to move from reactive to proactive models for providing medication, equipment and other care-related sundries. 

Carers report spending excessive amounts of time securing medications, equipment and other sundries for their loved ones. The DHSC should commission an assessment to:

• understand the nature of the current patchwork approach to reactive versus proactive provision
• identify opportunities to move to proactive, predictive and subscription-like models where those are not in place and it is safe to do so.

This would reduce carers’ workloads and the stress they experience when repeatedly seeking to secure vital medication and equipment for their loved ones.

Improving the partnership between carers and social care 

Recommendation 4: Government should introduce a statutory carer impact assessment requirement.

Carers interact with numerous institutions and systems, yet these are often designed and/or altered without consideration of their existence or needs. A new ‘carer impact assessment requirement’ should be introduced to address unintended negative consequences on this overwhelmed population. This could be introduced as a standalone measure or by making ‘carer’ a protected characteristic under the Equality Act 2010. 

While this report provides examples of areas where this would have been beneficial historically, for example in the digitisation of institutional communications, there are also forward-looking opportunities. Notably, the Government has committed to improving working conditions in 
the paid care sector. While this is welcome, improvements need to be introduced together with an impact assessment for carers, otherwise carers may bear the brunt of more costly paid care and its plausible reduction. Instead of intervening in individual policies in a piecemeal manner, a carer impact assessment requirement would ensure ongoing vigilance of potential impacts at a system level.

Recommendation 5: Nationally representative research should be undertaken to assess how preference shapes care systems and what this means for future care policy and funding.

In this research, a significant proportion of care receivers preferred kin-based care to paid care workers. This was shaping carers’ lives. While there are various small studies pertaining to this issue, there is no statistically representative estimate of how care preference breaks down either across the population or within specific communities, or how it might change over the course of illness or ageing. 

A well-designed future of care must be realistic: if a significant proportion of those needing care are likely to prefer kin-based support, a plan will be needed to meet this demand in a sustainable manner. Research should be undertaken to assess the extent of this preference to inform future care policy.

Improving carers’ wellbeing and opportunities

Recommendation 6: Government must improve carers’ incomes.

We need a better financial arrangement for carers. Carer’s Allowance is unacceptably low; from April 2025, it will be around £2.40 per hour for those caring for 35 hours per week. While the Government should raise this amount immediately, it should also aim for a more ambitious carer settlement based on the assessment of options. This evidence review should include:

• the feasibility and impact of increasing Carer’s Allowance to match paid care worker wages as set by the incoming Adult Social Care Negotiating Body
• models which directly employ family members/friends via municipal bodies (see Denmark and Sweden in Hoyer and Reich, 2016)
• statutory carer pay entitlements for those who are employed at the time of their caring responsibilities occurring, as previously recommended by the Joseph Rowntree Foundation (JRF) (2023)
• the impact on carers, on care receivers and on the quality of care of a shift from ‘unpaid care’ to ‘paid kin care’.

Recommendation 7: The DHSC should introduce rapid response units to provide care when carers themselves are unwell or hospitalised.

Many carers must carry on providing care while ill themselves. They also forgo medical treatment and may be discharging themselves from hospitals earlier than is advised. The DHSC should assess the volume of need, along with the economic and social impacts of failing to provide substitute care for unwell carers. In line with the findings of that assessment, the DHSC should provide funding to local authorities to establish localised rapid response units able to provide immediate care when carers cannot. 

Recommendation 8: Government should introduce a national goal to move towards a 4-day working week, freeing up time for care.

This report demonstrates that ‘flexibility’ at work helps carers to remain in the labour market. However, this comes at the cost of their wellbeing: it should not be regarded as a silver bullet for reconciling work and care. Instead, the Government should commit to moving the UK to a 4-day working week and normalise part-time work, freeing up time for carers to concentrate solely on care and increasing the number of family members/friends who have the time to provide care too. Numerous pilots and trials have demonstrated the ‘business benefits’ of reduced working time with no loss in pay; it is time to reap the care benefits too. 

Emily Kenway is an author, doctoral researcher and former carer. She spent 4 years as the primary carer for her mother who had cancer. This experience, along with in-depth research and analysis, was retold in her book 'Who Cares: the Hidden Crisis of Caregiving and How We Solve It’ (Hachette, 2023) which was shortlisted for the Orwell Prize for Political Writing and acclaimed by national media. Emily has written about care for a range of publications including the Washington Post, Guardian, Independent and more. She appears regularly in the media speaking about carers’ experiences and needs, including on CNN, PBS Newshour and LBC, as well as speaking to organisations and charities across the UK. She is currently completing a PhD at the intersection of criminology and sociology at the University of Edinburgh and running a research project on unpaid care for JRF.

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