Mother had carer’s allowance stopped while with disabled daughter in hospital | Carers

The mother of a severely disabled young woman was left in financial hardship after her carer’s allowance was wrongly stopped while her daughter was seriously ill in hospital.

Rachel Adam-Smith, 48, spent five weeks in hospital alongside her 22-year-old daughter who was being treated for severe gastrointestinal issues last month.

Adam-Smith is the sole carer for her daughter, who has a rare genetic condition, learning disabilities and is non-verbal. She receives £81.90 a week in carer’s allowance as she is unable to work full-time.

Benefits regulations state that personal independence payments and carer’s allowance stop when the cared-for person has been in hospital for 28 days because the state assumes their needs are being met.

However, in this case the payments were stopped without notice 15 days after Adam-Smith’s daughter was admitted to hospital, leaving the family hundreds of pounds in deficit.

Adam-Smith, from Wetherby in West Yorkshire, said it had left them dealing with “financial hardship” as well as the physical and mental exhaustion of spending five weeks at Leeds General Infirmary (LGI).

“We have a house with a mortgage and bills to pay so if we have a drop in what we’ve budgeted for then it’s having an impact on our finances,” she said. “We’re cutting back on food and fuel and activities and trying to be a bit more frugal.”

The Department for Work and Pensions (DWP) apologised for what it called an “administrative error” and reimbursed the sum after being contacted by the Guardian last week.

Adam-Smith said it was “so wrong” that unpaid carers were not entitled to carer’s allowance when their loved ones had been in hospital for 28 days, as they were often vital to communicate with medics.

The rule is another example of the draconian treatment of unpaid carers highlighted by a Guardian investigation into carer’s allowance injustices.

A senior nurse at Leeds teaching hospitals trust wrote to the DWP confirming Adam-Smith was caring for her daughter “consistently for the majority of the day, each day and often at night” for the duration of her five weeks in hospital and that medics needed her advice on how to care for and communicate with her daughter.

The nurse wrote: “I feel that it is wrong to stop the payments from the DWP for Rachel and [her daughter] as this is adding to further stress for Rachel at a really difficult time.

“The impact of caring for a young person with [her daughter’s] complex needs and disabilities is even more demanding when in hospital.”

Adam-Smith said it would be “inappropriate and unsafe” for her daughter to be left with unfamiliar people and that her caring role increased when she was in hospital.

“I haven’t had a day off in five weeks. I still have bills to pay, a house to keep. While carers don’t get much in terms of an allowance, it’s an insult to stop it when you are basically still caring, effectively being a staff member as the NHS don’t have the staffing available, or familiar carers to ensure she’s safe,” she said.

It is unclear how the DWP knew Adam-Smith’s daughter was in hospital, or why they believed she was no longer eligible for benefits.

Adam-Smith said: “They didn’t tell me, they didn’t ring me, notify me, check this was accurate. I’ve no idea how they were told.”

She called the DWP carer’s allowance team as soon as she realised the payments had stopped: “They said let us know when out of hospital and you start caring for her again. I said, I am caring for her, I’m here all the time in the hospital due to her complex needs, and he was dismissive.”

She said one DWP official questioned why she hadn’t notified the department sooner about her daughter’s hospitalisation, suggesting she was in the wrong. “It’s the sheer lack of care for anyone, and treating us like we are criminals.”

Adam-Smith’s MP, the senior Conservative Sir Alec Shelbrooke, described the situation as “completely unacceptable”.

He added: “The government was wrong to believe that the caring responsibilities of a parent looking after a severely disabled child stop altogether when a patient is in hospital for a brief period of time.

“This is a matter I raised directly with the department, on behalf of my constituent, and I’m pleased the case has been sorted.”

A DWP spokesperson said: “We are very sorry for the administrative error that saw Miss Adam-Smith’s payment suspended. We have contacted her to apologise and issued the arrears owed.”