Families across Britain have been forced to pay tens of thousands of pounds to cover the cost of care after facing rejection from the NHS’s “horrendous” funding system. 

In one case costing £180,000 per month, it has taken health secretary Sajid Javid’s intervention for the care funding needs to be recognised. 

The health service offers full funding for people requiring “continuing healthcare” with complex care needs. But very few applicants are successful and reviews are time-consuming.

Brian Doors*, 77, from Worcester, said it was only after his local MP Sajid Javid became health secretary that he had a small breakthrough in his “horrendous” two year battle for care funding for his 47-year-old son. However, Mr Javid refused to “get involved” prior to taking on his ministerial position, Mr Doors said. 

Mr Doors and his wife have been forced to pay more than £180,000 in care fees since his son’s funding was withdrawn at the start of 2020. 

He said: “The NHS was absolutely appalling and it was very upsetting. I grew up in a world where you paid your taxes and NI on the basis that the NHS would provide whatever was needed when you needed it. When this catastrophe happened, I assumed the NHS would be there for my son. I was really shocked when they said they intended to take his funding away.”

Mr Doors said his son has required full time care for the last four years since he had a brain hemorrhage at work, age 43. He developed sepsis and suffered a severe stroke, which left him paralysed, unable to speak, eat or communicate in any way. 

He has since improved but cannot walk and has cognitive difficulties, meaning he needs around the clock care. However, the NHS cut Mr Doors’ funding in Jan 2020, attempting to move him to an old people’s home. 

“It’s shocking when someone says that about your 45 year old son. He suffered a major mental catastrophe and he can’t be cast aside,” he said. 

Requests for an extra two weeks in the funded facility to find an alternative to the old people’s home were turned down and Mr Doors and his wife were charged £4,000 for the 14 days overstay. 

“That’s the level of apathy that the NHS had towards our son and the people who fund it. They didn’t care,” he said.

The new facility has cost £10,000 per month, with Mr Doors’ son racking up a bill of £180,000 in the last 18 months. 

“We manage his financial affairs and sold his old flat but we’re at a stage where it can’t go on because the money is running out,” he said.

Mr Doors said his wife had written to Mr Javid on two occasions, the first of which he refused to intervene. On second attempt, the health secretary agreed to get involved after his appointment and helped secure joint funding. Mr Doors said this was a breakthrough but was yet to be told how much his son would be awarded in funding.

Andrew Farley, of Farley Dwek, a law firm that specialises in such appeals, said the Walls family’s position was not uncommon. 

Mr Dwek said he expected to see funding taken away after NHS England announced it would make £855m in savings on CHC and NHS-funded nursing care by 2020-21 in its strategic improvement programme.

“It was not therefore surprising that in the lead up to 2020/2021 we would see many individuals having funding removed in circumstances where there had been no change in need,” he said.

The NHS Confederation declined to comment when asked. 

*Name has been changed