Only 12% of unpaid carers say they get enough support from social care system

Unpaid family carers say years of government neglect is pushing them into poverty, exhaustion and despair.

Unpaid carers taking part in a major new Carers Trust survey have said in overwhelming numbers that they are not getting enough support from the social care system for their caring role.

Almost two thirds of unpaid carers taking part in the survey (64%) said they do not receive enough support. A further 24% responded that they weren’t sure whether they got enough support. Only 12% of respondents agreed that they were getting enough support from the social care system.

The survey results also point to how central government cuts leading to the closure of local services is putting unbearable pressure on unpaid carers who are now providing the vast majority of care in the community. According to the survey, almost two thirds of unpaid carers (64%) are now spending 50 hours or more per week caring for a family relative. This suggests that in just nine years the proportion of unpaid carers providing 50 hours’ care or more per week has almost tripled since the 2011 Census (23%).

The survey was completed by more than 2,000 unpaid carers across the UK. The survey also asked participants to describe their worries about the future and how a lack of support and services was affecting them now. Large numbers of carers consistently described how closure of local services even before the pandemic had increased pressure on them to provide round-the-clock care, leaving them at breaking point. This, in turn, has left many unpaid carers with no choice but to stop working, or at least to reduce their working hours, leaving many facing severe financial hardship.

One female family carer summed up the despair described by so many carers in the survey when she said what she would like to say to the Prime Minister about what would make a difference:

“Would you work 50 plus hours a week for £67.25, with no lunch or tea breaks,  with no social life? Then please understand how worthless I feel.”

Other headline survey findings:

• Coronavirus has exacerbated what was already a dire situation for unpaid carers, many of whom were at breaking point even before the pandemic struck. One in six (16%) reported that lockdowns and closure of local services has forced them into caring for an additional 40 hours or more per week.
• 54% of carers have given up, or reduced, paid work because of caring responsibilities.

When asked what forms of support they most needed from government, carers responded:

• A break or respite from their caring role and some time for themselves (59%).
• More financial support so their caring role doesn’t impact on their financial status (56%).
• Better health, social care and education services for the person they care for (60%).

Carers also said they need support for their own mental health and emotional wellbeing and real choices about whether to stop or reduce their paid work.

For those who have had to give up work, or reduce their working hours, there is little support from the government beyond a meagre Carer’s Allowance (£67.25 per week in England), pushing many exhausted carers into real financial hardship.

An embargoed policy report on the survey findings is available on request.

Carers Trust recommendations for the UK government

The UK Government should develop and implement a plan for sufficient, secure and sustainable social care funding reform. This plan must move away from annual settlements, which do not allow local or devolved governments to plan resources effectively. Reform must address the following recurring issues that impact heavily on unpaid carers:

• Unpaid carers having to provide more care to people with care and support needs because of the shortfall of quality social care for disabled/older people.  
• Not enough unpaid carers being identified or assessed for their own needs.  
• Cuts to local authorities’ budgets and inevitable closures of local carer services. 
• When support is made available to an unpaid carer from a local authority, it is often a one-off payment which does not consider individual needs.  

Responding to the survey findings, Carers Trust CEO Gareth Howells said:

“This survey lays bare the human cost of a lack of investment in our social care system and the ever increasing burden being placed on unpaid carers.

As I read down the responses to questions about how well they are supported, unpaid carers recounted the despair and hurt they feel at having to weigh up a choice that no one in Britain should have to face – between continuing to provide dedicated care for a sick or disabled relative and the inevitable financial hardship this brings in far too many cases.

“Successive governments’ refusal to find a solution to the social care funding issue now means unpaid carers are at breaking point."

Gareth Howells continues:

“Coronavirus is no excuse to kick reform of social care funding down the road. In fact, it is coronavirus that has brought into sharp, undeniable focus the awful impact of long-term neglect for unpaid carers. So the government must now act on this evidence. First, it must urgently raise Carer’s Allowance to a level that lifts carers out of the extreme hardship that so many are undoubtedly facing. Secondly, it must come up with a comprehensive plan and invest the billions that are required to deliver a fit for purpose social care system - rather than the present model which does little more than exploit exhausted unpaid family carers to provide social care on the cheap.”

Carers’ voices from the survey

Carers responding to a survey question asking what worries them most about the future:

“Money. I currently work but am having to give up work because I can't afford to care and work anymore - it's ruining my health. This will leave our finances in a mess, but I don't have a choice.”
Male Carer aged 55-64

“Everything. Death, being able to cope, the crushing loneliness and poverty.”
Female Carer aged 45-54

A female carer aged 55-64, responding to a question about what support is available:

“I have no support at all from anyone.  I care 24/7 for my autistic adult daughter who left supported living because of abuse and neglect.  I have had no help in four months. I live alone, am disabled myself and have been left to meet every single one of my daughter’s needs, from accommodation, to mental health (she was suicidal when she first came here) and everything else.  Her SW [social worker] promised at least outreach support but as yet none has materialised.  I have finally managed to get her some Talking Therapy but it is a fight for everything and I have no-one supporting me.  There is almost no possiblity of independent housing for her so no help with accommodation,  no local groups or activities for her so all her leisure and social needs have to be met by me, she was very ill when she returned so her physical health has required a huge amount of work and I have had not one seconds help with that from anyone.  I'm at breaking point but there's nothing out there.”

A male aged 45-54, responding to a survey question about what he would say to the Prime Minister about what would make a difference to him as an unpaid carer, said:

“Recognise the value of what unpaid carers do for this country and how much we save the government and local authorities - show us a bit of financial appreciation for that, rather than punishing us through the Universal Credit system and it's savage deductions of "unearned income". It's costing me £130 a month out of my benefits to be a home-based carer. How is that fair?” 

Ends

Expert spokespeople from Carers Trust, and carer case studies, are available for interview on request.

For further information, and to arrange interviews, please contact: Matt Whitticase on mwhitticase@carers.org and 07824 539481.

Notes to editor:

Carers Trust is a major charity for, with and about carers. We work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.  www.carers.org 

We do this with a UK wide network of quality assured independent partners and through the provision of grants to help carers get the extra help they need to live their own lives. With locally based Network Partners we are able to support carers in their homes through the provision of replacement care, and in the community with information, advice, emotional support, hands on practical help and access to much needed breaks. We offer specialist services for carers of people of all ages and conditions and a range of individual tailored support and group activities.

Our vision is that unpaid carers count and can access the help they need to live their lives.