When artist Cas Holmes, 66, arrived home with her partner after he was discharged from hospital following a stroke, she didn’t go to bed for the first two nights. She and Derek were up every hour as he wasn’t able to relieve himself without help.

“I had physically no night support whatsoever,” Holmes said. “I felt like I was being required to do a job that requires a lot of experience for which I had no training.”

Five years later, Holmes is Derek’s full-time carer and still doesn’t get any help overnight, but has learnt how to get into deep sleep “very quickly” so she can get some rest. Whilst she welcomes the focus that Andy Burnham is putting on social care, she thinks unpaid carers like her still aren’t being listened to, and worries that they will continue to bear the brunt of the failing system.

“If you don’t fall within perceived normalities of ageing care…there’s no support,” she said of the Prime Minister’s plan.

Holmes has had to give up working outside of her garden studio since Derek’s stroke, stopping running workshops in the local community and travelling as she can’t leave him alone.

“I miss contact with people,” she told The i Paper. “I can’t leave the house for more than an hour or so at a time and I’m never more than 15 minutes walk away from the house.”

As Derek, 79, is above state pension age, he gets attendance allowance which allows Holmes to pay for respite care once every two weeks so she can get a break. Otherwise, she’s on call all the time.

“It literally means I’m never off, and I’m certain that that’s the same for all full-time carers, they don’t have an off button,” she said.

According to new research commissioned by the charity Carer’s Trust, there are 1.2 million unpaid carers already put in hours equivalent to a full-time job. The charity estimates that there will be a shortfall of 600,000 unpaid carers by 2035, rising to a million by 2050.

It is not yet clear what support Burnham’s new national care service, announced at the Labour Party’s conference last week and due to come into place after the next general election, will provide to unpaid carers. He has promised free personal care to over-65s, but this would not help people like Holmes who need support around the clock, rather than a few visits a day to help with washing and dressing.

‘Illness doesn’t work like that’

Holmes is still hopeful that Burnham’s plan might improve the social care system, but thinks what has been proposed so far wouldn’t address her issues.

“That sort of care which might be two to three times a day, if we could get it, would be totally inappropriate for our needs. Illness doesn’t work like that” she said. “‘The thing that would support me is actually being able to have three hours a week where I can get away.”

Holmes has tried to arrange respite care through her local authority in Kent and their partner providers but each time she booked it was “cancelled within two or three days”.

Not a ‘one-size-fits-all’

When the local authority was coming up with a plan for Derek’s care, Holmes felt like their specific needs “weren’t a priority”, rather how they “fit the system” that was provided. This view was echoed by Liam Berge, 32, from Blairgowrie, Scotland, who looks after his wife who is a wheelchair user and requires help with day-to-day living.

Adults over 65 and with certain health conditions already get free personal care in Scotland, while Berge said this support has been “fantastic”, there are still problems that stem from not listening to the needs of unpaid carers.

“When it comes to care and there is no one-size-fits-all, everyone has a very different need from each other,” said Berge. “And I think the support needs to fall in with that.”

Berge had to give up his work as a silversmith because the money he was making pushed he and his wife out of the universal credit bracket that allows her to get extra support. He thinks this wouldn’t be the case if the people setting government policy understood the reality of being a carer.

“The bigger the system is, the harder it is to see people as individuals,” Berge said. “If you’re sitting there, not asking, but then saying, ‘this is what we’re going to do, because this is going to solve it’ –  it’s not actually going to be what’s needed.”