Unpaid carers tell us they're not getting enough support - here's what would help

In a year where Artificial Intelligence and automated sources of information have been everywhere, there remains at least one area where machine learning should never take priority – the insight that comes from personal experience.

This week, Carers Trust has released the findings of a survey that heard from nearly 3,500 unpaid adult carers across the UK. The survey wasn't just completed by carers. They designed it and analysed the findings too. The result is insight, stories and data that should leave no decision-maker in doubt that many of the UK's seven million unpaid carers are worn out and on the brink of collapse. The survey also shows how unpaid carers from different groups and communities experience wild disparities in the support they are able to access for their caring role. Immediate action is needed.

This year, we asked questions that probe into live issues for unpaid carers, focusing on how easy, or difficult, it was for them to access support. We’re extremely grateful to our unpaid carer advisors who have been central to each stage of the process, and will continue to be as we build on the findings.

Carers facing burnout

What comes through loud and clear is that unpaid family carers are tired of platitudes – as the quote from one of them in our report title says: “Unpaid carers are not unsung heroes. We are forgotten, neglected and burnt out.”

Admiration only goes so far, particularly when carers report the huge increase over just one year in the amount of hours they spend caring. That pressure is exacerbated for the many carers who now have fewer places or people to turn to for help. One quarter of respondents report being the only one providing care.

We are now at the point where just over half (55%) of all unpaid carers feel they get the support they need. This neglect has a knock-on effect for their own physical and financial wellbeing. Fewer than a third said they are able to access a break from caring whenever needed. Just as worryingly, Carer’s Allowance - the principal benefit for carers and yet the lowest benefit of its kind at only £76.75 per week - is not making a material difference to nearly enough unpaid carers. Given it also comes with restrictions on other forms of income, this is a big problem at a time of inflation and a cost of living crisis.

The accompanying report fills some really important gaps in understanding how different characteristics or vulnerabilities can have a knock on impact to the level of support you get as a carer. Certain groups, such as female carers, older carers, LGB+ carers and unpaid carers from ethnic minority communities, are finding it harder to access and experience support than those from proportionately less marginalised groups. This clearly points to the need for more targeted interventions.

Recommendations for change

Decision makers haven't even started to address the pressing needs of family carers, many of who are clearly close to breaking point. Our findings suggest the health, care and welfare system itself probably doesn’t know what is needed, given fewer than one half of carers reported having an assessment or review of their own needs in the last year.

This clearly doesn't fit with the priorities that politicians tell us are top of their agenda. More people are wanted back in the workforce, they say. But the lack of support for unpaid carers means that many are forced to give up paid work - research from previous Carers Trust surveys found that almost two thirds (64%) of unpaid carers had either had to give up work altogether, or significantly reduce their hours because of their caring role. People should also be protected from the cost of living crisis, yet existing benefits for carers are nowhere near enough to provide quality of life alongside their caring role.

Thankfully there are both solutions that would make a difference and opportunities coming up to implement them. Shaped with our lived experience panel, our recommendations for change centre on:

·       Reforming Carer’s Allowance

·       Giving unpaid carers a statutory right to short breaks

·       Addressing the significant short fall in social care funding

Health systems across the UK are rightly planning ahead to meet winter pressures that will be most visible in hospital A&Es and wards, but which will be felt far beyond. Efforts to ease those pressures would do well to recognise and act on the findings from this survey given the clear reliance on carers to fill gaps in the system.

A carers’ election?

In the run up to a general election in Westminster, the next 12 months could not be more significant. With close to one 10th of the voting public providing unpaid care, all candidates need to be fully aware that carers count. From the point election foundations are set at party political conferences over the next month through to polling day, unpaid carers must be a key part of the conversation. Commitments are needed now to drawing up meaningful interventions that can relieve the very issues reported by the 3,500 carers who completed our survey. These commitments shouldn't be just for those family members supported by unpaid carers - they should also recognise unpaid care as a voting and societal issue in its own right.

The team at Carers Trust, and a note of thanks here to the fabulous Beth for leading the survey and reporting work, will use these findings and recommendations to make the strongest case across the UK, raising the voices of unpaid carers as publicly as possible. We welcome all of you on that journey.