Over 90% of adult unpaid carers feel ignored by the Government

• 91% of unpaid family carers feel ignored by the Government.
• Almost nine out of ten (86%) unpaid carers either agree, or agree strongly, that successive governments have ignored the needs of unpaid carers for a long time.
• 84% of survey respondents disagreed, or disagreed strongly, with the statement ‘I have confidence in the Government’s ability to improve the lives of unpaid carers'.
• 49% of survey respondents said they’d had to use their personal savings because of their caring role.
• 51% of survey respondents said they’d had to give up on hobbies or personal interests because of their caring role.

Findings from a new Carers Trust survey (1) provide alarming evidence of a deep-rooted failure by successive governments to understand and meet the basic support needs of millions of people struggling to provide unpaid care for a family member or friend.

There is a near total sense among survey respondents of feeling abandoned by Government over a long time. Almost nine out of ten (86%) of unpaid carers agreed, or strongly agreed, that ‘successive governments have ignored the needs of unpaid carers for a long time’.

And only 1% of respondents (just 12 out of more than 1,500 unpaid carers who completed the survey) felt that politicians understand unpaid carers.

A separate poll of the UK public by research company Opinium (2) for Carers Trust found that UK adults support the need for unpaid carers to receive more support from the Government. According to the Opinium poll:

• Four in five UK adults (80%) agreed that the Government needs to do more to support unpaid carers.
• More than two thirds (68%) of UK adults agreed that all unpaid carers should receive financial support from the Government.
• Almost half (46%) of UK adults did not agree that Carer’s Allowance is a fair level of support for an unpaid carer looking after a family member or friend for a minimum of 35 hours a week.

Unpaid carers being driven into acute financial hardship

Carers Trust’s survey results also demonstrated how many unpaid carers are being driven into acute financial hardship because of their caring role, with inadequate financial support from successive governments widely cited by survey respondents in their written responses.

Of those unpaid carers responding to a question on whether they had had to give up paid work because of their caring role, almost half (48%) said they had.

Financial pressures arising from giving up paid work are further exacerbated for many unpaid carers unable to claim Carer’s Allowance. The survey found that, of those responding to a question on whether they were receiving Carer’s Allowance, more than half (51%) said they were not.

A common complaint from survey respondents was how family carers of pensionable age stopped receiving Carer’s Allowance because they were receiving pensionable income, even though they were caring for a family member round the clock:

“I did [receive Carer’s Allowance] until I reached my state pension age, but as they class a pension as a benefit and you cannot get two "benefits" it was taken away. I have an underlying right to it though...Caring gets harder as you get older.”

Many unpaid carers receiving Carer’s Allowance complained that payment of £67.60 a week inadequately recognised the number of hours they spent on their caring role. They also felt the payment was not enough, given the complexity of needs many carers have to deal with. One carer commented that, after adding up all the hours he spent caring for his wife, he was earning just 50p an hour from Carer’s Allowance (2 - see Notes to Editor for more statistics on carers’ finances).

Responding to the survey findings, Carers Trust’s Executive Director of Policy and External Affairs, Joe Levenson, said:

“Day in day out millions of unpaid carers play a crucial role, caring for family and friends and propping up our creaking social care system. But it’s clear from our survey that this is at great personal cost, and that unpaid carers are struggling to cope and feel marginalised and ignored by government.

Reading the anguished responses from unpaid carers you get an overwhelming sense of how so many have been brought to breaking point. Unpaid carers are united in saying that they feel ignored and let down by the failure of successive governments to improve their lives, including through wide-reaching social care reform that could ease the responsibilities of care placed so heavily on family carers.

That’s why the all too familiar practice of paying lip service to supporting carers while looking the other way must stop now. We welcome the UK Government’s recognition of the importance of unpaid carers in the recent adult social care white paper and are committed to working together to improve carers lives, but unpaid carers need ambitious and transformational change and they need it now.

The Government could let carers know they have been heard straight away by introducing a national strategy for unpaid carers, to ensure their needs are a priority across government. And they should act on what unpaid carers have told us, putting them at the heart of this strategy so it’s able to deliver the transformational change that’s desperately needed – such as boosting Carer’s Allowance and making it easier to claim and funding regular breaks and respite for carers.”

In response to the survey findings, and on behalf of the carers who told us what was needed, Carers Trust is calling on Government to develop a new UK Government Strategy for Carers. The strategy should include: improved availability of statutory care and support for people with care and support needs of all ages, so that unpaid carers’ caring roles are sustainable; improved support for unpaid carers themselves, including regular breaks and respite so unpaid carers can live a meaningful life alongside caring; a reform of Carer’s Allowance so that unpaid carers are better protected against financial hardship.

Carers Trust’s full set of recommendations for Government, as well as comprehensive findings from the survey, are available in its report, Pushed to the Edge.

A selection of quotations left by carers responding to the survey is below. The quotes are available for publication. But because carers responded to the survey on an anonymous basis, quotes cannot be attributed to a named person.

Ends

Notes to Editor:

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

(1) 1,561 adult unpaid carers from across the UK responded to the Carers Trust survey between  5th and 28th November 2021.

(2)  The Opinium research was commissioned by Carers Trust. The research comes from a poll of 2,000 UK adults between 30 November and 3 December 2021, weighted to be nationally and politically representative.

(3) Other findings on the financial pressures being exerted on unpaid carers include:

• 49% of survey respondents said they’d had to use their personal savings.
•  27% of survey respondents said they’d had to borrow money from a friend.
• 24%% of survey respondents said they’d had to use a credit card to pay for everyday items.
• 31%% of survey respondents said they’d had to cut back on food.
• 42% of survey respondents said they’d had to cut back on other household expenditure.
• 51% of survey respondents said they’d had to give up on hobbies or personal interests.
• 45% of survey respondents said they’d had to use their own money to pay for things that are essential for their caring role.

Carers’ voices from the survey

Please note that carers responded to the survey anonymously. The quotes offered below are available for publication but because responses were made anonymously, they cannot be attributed to a named person.

Responding to the question “Do you receive enough support as a carer at the moment?”

“The lack of financial support puts a ridiculous amount of stress on the family, when life is stressful enough as it is. We may end up having to sell our family home.”

“I feel incredibly trapped, isolated and alone. I have severe mental health issues of my own to deal with and virtually no support for myself. I have no friends or family which can help as they don't live locally and the mental health services and respite services in my area are beyond dire. My husband gets incredible medical support for his condition, yet I'm expected to provide 24-hour care 365 days a year alone.”

“I am on my knees. I can't function exhausted and feel ill all the time.”

“No longer able to work. Putting strain on marriage. Do little for my own enjoyment. Occasional suicidal thoughts.”

“Hopeless. Constantly stressed and exhausted trying to balance full time work and caring responsibilities, and honestly buckling (mentally) under the emotional blackmail (guilt-tripping) of the elderly parent I care for.”

“Many people (quite rightly) focus on the difficulties my wife has in life. Usually, she is the only one who asks about how I am or what I would like / need. There are plenty of times where I have to take her places (appointments, A&E) & then spend a lot of time being on call waiting to pick her up, get to see her or looking after her when she gets home. Trying to juggle with working full time, looking after the dog & having time to myself is difficult. My 'me time' is usually from around midnight till 3am which is not conducive to resting properly & being able to cope with everything. I would appreciate the opportunity to have some more 'me time' at more sociable hours & to be able to go out without worrying. I would like to be able to spend an evening not sitting waiting on a call to "come get me" when my wife is able to go out.”

Responding to the question “What worries you most about the New Year and the next six months?”

“The fact that we may need to sell our family home (that has already been suitably adapted for our severely disabled son) and move to a smaller property (with 3 children) that is unlikely to meet the needs of my disabled child. We cannot afford birthdays, Christmas or family holidays at all”.

“Having the respite I need so I can be the best I should be for [the person I care for] and other siblings. If I am not taken care of I am concerned I would be overwhelmed and not manage to carry out my caring role properly.”

“Paying the electricity bill. Sliding further and further into hopelessness. Being forced into unsuitable accommodation and not coping with the effects of that.”

“Costs spiralling out of control My own health needs ignored. My mental health suffering. No end in sight unless I step away from being a care giver....I do not want to end up on anti-depressants myself!!”

About Carers Trust

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.  

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.