'Every day I'm just winging it': The families hoping for social care reform

Andy Burnham has pledged to reform the adult social care system in England, meeting the Conservatives and Liberal Democrats to try to find "common ground" on the issue.

He wants an independent review of care to be brought forward by a year to 2027, as well as major reforms to pay and conditions for staff and the creation of a national care service.

But the prime minister said "difficult decisions" would have to be made on tax to fund sustainable change, adding that in an "ideal world" no-one should have to sell their home to pay for care.

BBC Your Voice has been speaking to families affected by what they see as shortfalls in the system.

Emma Riley has been caring for her mother Carol, who has dementia, since she lost her father 18 months ago.

"She's a cracking lady, still with a sense of humour but she's living with this awful condition," said Riley, from Manchester.

She is paying £34 an hour for a care company to come to the house three times a week, which she describes as a "huge chunk of money" although she is happy with the level of care.

Riley wants to keep her mum in the family home, but the caring commitments affect her job as a dental nurse.

She started applying to the local council for funding to support her mother at home at the beginning of the year, but six months on, she is still waiting for a final decision.

"It's not the social worker's fault, it is just the caseload," she said.

Riley called for more communication to help her navigate the system, adding: "I'm blindly going through it at the moment.

"Every day I'm just winging it but there's a human being upstairs."

Riley said she heard the prime minister's speech and it had left her feeling "quietly confident".

Burnham has announced that a review of social care by veteran Whitehall troubleshooter Baroness Casey would now be published next summer.

"I do think Baroness Casey will make the changes we need," Riley added.

Lisa Greenwood, from Halifax, West Yorkshire, said she would be supportive of the prime minister if he managed to change how the care sector operates.

"It does need changing and hopefully it will get better," she said.

Greenwood said her family is having to make "some very tough decisions" in caring for her mother, Mavis, who is 90 and in local respite care.

It is costing £1,305 a week, something Greenwood says the family "cannot sustain".

She said they now face the prospect of having to sell her mother's home, describing this as "very distressing".

Greenwood backs Burnham's proposal to increase pay in the sector and suggests it will help attract more staff.

"Carers do need to be paid more," she said. "There are some fantastic people doing the job on little wages."

Greenwood told the BBC's Your Voice that both her parents had worked "all their lives saving for the future".

"Yet here we are in a situation of stress not knowing how we are going to continue with mum in the home," she added.

"We can't give up our jobs, we need to work to pay our bills."

Sophie Daniels was 16 when her father died in 2024 as a result of stage 4 glioblastoma, a highly aggressive brain tumour.

The 18-year-old felt that there was a lack of support for her family. Along with her mother and sister, she looked after her father at their home in Swindon, Wiltshire, as "social care provision was incredibly limited".

Daniels said: "We hardly had any help and we were left to figure things out ourselves.

"Thankfully, charities helped us with that but towards the end my mum had to give up work to care for my dad."

She said that one of the biggest practical challenges her family faced was a lack of a lifting service to help him move around the house.

"He fell fairly frequently and a lack of lifting service meant that our dad was forced to either wait for hours on the floor for an ambulance or for us to try and use techniques to pull my dad up."

Steve West, from Wakefield, West Yorkshire, cared for his mother for many years before taking the difficult decision to place her in a care home. She died earlier this year.

West, 64, said he was "frustrated hearing the same issues that need fixing being discussed by each new government".

Listening to the prime minister's speech, he said that a proposed national care service "could give focus, but its remit needs to be confirmed".

"I think a cross-party approach would be a benefit as the plans would take a few terms of parliament at least and then to maintain the benefits for years to come," he added.

He said when caring for his mother, the biggest challenge was "knowing who to speak to" and "dealing with several health bodies", sometimes having to repeat her medical history several times.

"She got progressively worse and I remember one time sitting in a car park for an hour-and-a-half trying to get an emergency social worker," he said, adding that "having a system that is unified would be a massive help".

West believes the prime minister "needs to focus on one or two big-ticket items - those that will have the biggest impact".

He said if relatives caring for loved ones were paid at similar rates to private companies, "perhaps more people would feel they were able to provide support" as they would not be negatively impacted by cutting work hours or leaving their jobs.

Jeanette Barry from Essex was married to her husband John for 42 years before he was diagnosed with dementia in 2018.

The former policeman was moved to a local care home as his needs became more complex.

"At one point he was roaming the streets at night because he thought he was still on duty," said Barry.

"I couldn't keep him in the house, so at 2am or 3am I was having to follow him to make sure he was alright."

She paid £2,000 a month in care home fees out of her husband's police pension, on top of local authority funding, although she didn't "begrudge a penny of that money" as he was well looked after.

She says she was told by one social worker that she would have to remortgage her house or her husband would be moved to another care home, but he was later reassessed and qualified for more financial support.

"I had to think twice before putting my heating on," she says. "It was a horrible, terrible time for the family."

Barry, whose husband died two years ago, said she doesn't have much faith in politicians to make the social care system work, but noted the prime minister has experience of the matter as his father has Alzheimer's.

"They all make promises but then they never do anything," she said.

"I have slightly more confidence in Andy Burnham because he has personal experience of dementia but how is he going to pay for it?"