Last year over 12,500 of you filled in our State of Caring survey. We are so grateful to every single carer who took the time to respond.
We would really like to hear your experiences of being an unpaid carer in 2025. Please fill out our survey by **10 August on this link: https://www.surveymonkey.com/r/QN5PPJC
Our annual State of Caring survey is the most extensive survey into unpaid carers’ experiences in the UK. It is used as a vital source of evidence not only by Carers UK, but by many other organisations including Government, local authorities, health and social care services, charities and carers’ groups. Carers UK is a membership organisation, and we cannot campaign for change without carers’ help. With new proposals and policy changes being announced by the UK Government, it is more important than ever that you have your say.
Thank you in advance for completing the survey.
Done. Glad to see that you now ask if people have been caring for over 50 years!
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Filled in but little space to add my worries about how ‘mental capacity’ is defined and also how the mentally ill and the elderly are allowed to not just put themselves in danger but also others and nothing can be done as it interfers with THEIR human rights. So if my husband walked into the road and caused a crash because the cars tried not to hit him, this would be acceptable? I guess I would be told to ‘hold him back’ or keep him at home but the former is not a viable option for my safety and the latter means MY quality of life is becoming impacted very badly. I agree there are no ‘cut and paste easy answers’ but this does need to be discussed and Carers UK need to be aware that this happening. The Dementia Forum too has people in similar positions to myself and yes, I have written to his GP.
I found the questionnaire far too interested in working carers and carers of working age. Nothing about young carers, parent carers, retired carers and the issues around them. I’ve been all five at one time or another, and although many issues are similar, I can tell you that the only future I’m interested in now is that of my wife and sons. The only way I won’t be a carer in the future is through my incapacity or death. Financial advice for me would come far too late - and when I sought it 30 years ago, the agencies I contacted either knew nothing about it or knew nothing about caring and the impact it has on income. I suspect very little has changed.
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The Chancellor keeps talking about “working people” but doesn’t recognise the hardest working people of all, for up to 168 hours a week are unpaid carers. How can we change the view that being a carer is a soft option? No respite - day centres and respite homes closed!
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@bowlingbun I would love to say ‘strike’ but Carers are compassionate so we would not do this. Lobby our local Councillors? MP’s? Get Legal Advice is we are in a position where Adult Social Services are trying to ‘force’ us to care even if it is not in our mental health or physical health interests as we are all getting older.
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I have to agree with the comment @Charlesh47 made on Roll Call thread about the Survey focussing a lot on WORKING Carers and how to make it possible to work longer hours and still be a Carer. I feel this misses the fact that a HUGE number of us are unable to work due, not just to the number of hours we work as Unpaid Carers, but also the toll it takes on us - leaving us exhausted physically and emotionally. I had planned to get a part-time job after Graham’s stroke but there is NO WAY I could hold down a job now (perhaps I am unemployable?) because of the uncertainty of his condition - one morning he can be fine to be left for a while, yet another he can’t be left for more than 20 minutes. NO employer would or could be flexible enough to cope with that.
@Paola_Carers_UK I do hope this will be picked up by CUK.
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@Chris_22081 You are so right. I too would LOVE a part time job because if E does go into residential care I would need to work to have any kind of ‘quality of life’ financially. But E like G is so unpredictable health wise it would be impossible to hold down a job. Also the constant feeling of being ‘on edge’ and wondering when next crisis is going to happen can break the strongest of Carers. The ‘grey’ area and the ‘watchful waiting’ too when one does not quite know if things are going to progress as in an infection for example.
Day centres (all closed down now) were brilliant because the carer could relax knowing that whatever happened, the staff were trained and could cope.
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I suppose for me the issue is that E is in denial. He does not think he needs a carer. He would not go to a Day Care Centre because he would say that everyone was beneath him intellectually. My only way forward is to push that he is becoming a danger to himself and needs 24/7 care. But yes, I can understand that a Daycare Centre bit like a Nursery would give ‘peace of mind’ if the staff were trained that the caree was safe.
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Thank you so much for completing the survey – we value every single response, and are grateful to carers for taking the time to fill it out. We will bear this feedback in mind for next year’s survey. Every year we receive feedback from carers and this is recorded for next year’s survey so that we can adapt where necessary.
We completely appreciate that not all carers want to work in paid employment or are able to do so. However we also know that many carers would like to combine caring with paid employment and find this increasingly difficult, often resulting in carers giving up work – and this can have a significant impact on income and carers’ ability to plan for the future. Our recent research found that giving up work to care was the biggest reason for poverty amongst carers – this is concerning. We know that support from social care services is vital in allowing people to take a break, and to feel they have a choice in whether they provide care, and how much care they provide.
We are keen to hear from all carers from all different circumstances, and have some questions at the end, for example, for people who are caring for a child as well as adult relative, and people who are jointly providing care, to recognise those particular situations.
Thank you for the feedback @Chris_22081, I have passed it to the Team, I’ve just posted below a response they have kindly shared. Thank you again for taking the time to complete the survey.
Thank you Selina for raising a point about Mental Capacity. It might be helpful to visit: : https://www.nhs.uk/social-care-and-support/making-decisions-for-someone-else/mental-capacity-act/ And although this info is aimed at health and social care professionals, you might find this info about the intentions of LPS of interest: What are Liberty Protection Safeguards? - SCIE’
The Court of Protection oversee the MCA. Perhaps you could email them about any concerns. Contact details can be found here: https://www.gov.uk/courts-tribunals/court-of-protection
Sorry Paola - I find that a particularly “woolly” response which says nothing. To respond that “not all carers want to work in paid employment” and then go on to say “carers…find it increasingly difficult resulting in them giving up work” says nothing about how that can be addressed or what suggestions CUK is coming up with to put forward to Government. OF COURSE giving up work causes poverty amongst carers. I get Carer’s Allowance and a further £200 a month from a small private pension - nothing else. Last week a friend was bemoaning having to spend £25,000 refurbishing a house she lets out and it means they would not be able to afford a holiday this year…Pray tell me - What’s a holiday?
With non-responses like the one you posted, it makes me wonder how detached CUK has become from the real world of UNPAID CARERS?
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Surely those of us that CANNOT work outside the home because we are FULL TIME CARERS ie 168 hours a week are the most deserving of CUK’s support?
Early state of caring questionnaires always assumed just one caree, then I pointed out I had FIVE! No extra Carers Allowance though.
We had 16 years without a child free day
Our stubborn disabled elderly parents wouldn’t accept outside help, thinking only of themselves, never considering the impact on us, physically or financially. We saved the state a fortune.
My husband died of a massive heart attack.
I developed cancer.
Do we need a new way of defining carers and how Carers Allowance is paid?
I’ve long said that what carers do IS work and needs to be recognised as such.
The argument that paid carers are more highly trained and better than us is insulting.
How can people caring 24/7 go out to work?!