How one family was left £50,000 out of pocket because of a seven-year care funding backlog

The NHS is supposed to pay for the care of the most severely ill
The NHS is supposed to pay for the care of the most severely ill

A major backlog of cases means that some people in care are dying before their funding claim is reviewed, Telegraph Money has discovered.

A Freedom of Information request to NHS England, the health watchdog, has found that there are around twice as many requests for an independent review of continuing healthcare (CHC) funding decisions each year as there are reviews actually heard. CHC funding is available to those with severe care needs. If eligible, their costs are met entirely by the health service.

Decisions on eligibility are made by local “clinical commissioning groups” (CCGs). Those who are rejected, or have their funding withdrawn, are able to appeal to NHS England.

Changes made in 2012 led to a huge spike in claims and the watchdog is still struggling to get through them, lawyers say, while each year hundreds of new appeals are lodged.

The figures show that 1,584 reviews were requested in 2018-19, while 949 were completed. The previous year there were 1,608 requests but just 752 reviewed. The number of decisions being overturned also increased from 125 to 196.

Dan Winter of Nockolds solicitors said: “The delays are measured in years, not months. There was an absolute flood of claims in 2012 and they are still working through them. Local NHS trusts don’t have the resources to deal with them quickly.”

Some experts argue that the lack of funding means some CCGs could feel under pressure to reject applications or withdraw payouts. According to the National Audit Office, NHS England wants CCGs to cut CHC spending by £885m by 2021. Around 160,000 people received the funding in 2015-16, at a cost of £3.6bn; the sum is forecast to rise to £5.2bn by 2021.

Andrew Farley of Farley Dwek, a law firm that specialises in CHC reviews, said: “We are finding that there has been an increase in cases where someone has been granted funding and has later been told it will be taken away.

“It is because the NHS wants to save money. There are situations where it is correct that funding has been removed, but we are getting more and more people who don’t understand why the money has been withdrawn.

“You know that when they come along and say they want to review your case, sure as eggs is eggs they are looking to pull the funding.”

Mr Winter also questioned why almost the entire appeals process sat within the NHS. Mr Farley agreed, saying: “There should be some kind of independent body that regulates or oversees this process because at the moment the NHS is judge, jury and gatekeeper.”

If funding is withdrawn or rejected, families must first appeal to the CCG. If that fails, they can take their case to NHS England. At both stages, the appeal is heard by staff with no connection to the case.

If both of these steps fail, cases can be taken to the Parliamentary & Health Service Ombudsman.

The cases are rarely straightforward and those involved often die before they get a result, Mr Winter said, even though appeals that involve a living person are prioritised.

Mr Farley cited a recent case of an 80-year-old who was left needing care following a stroke. She first received CHC funding in 2012 but was reassessed in 2017, resulting in the cash being withdrawn. She was left with a £1,000 weekly bill for her care.

She appealed against the decision in late 2017 and, while waiting for her case to be heard, she was reassessed in 2018, when funding was reinstated. The appeal eventually took place in March and determined that funding should not have been removed. Mr Farley said his firm was now recovering more than £50,000 that she should have received.

Mr Winter said the complexity and lack of records in historic cases made them incredibly challenging. “When you are dealing with these claims, the evidence that’s available will be paper-based records from hospitals and GPs,” he said. “It’s very hard to piece it all together.”

Delays can have serious consequences for the families involved and some are forced to sell their homes to meet costs while they wait for their hearing. Mr Farley said that homes were often sold at a discount, because of the need for a quick sale, and that the NHS should pay compensation. He has never been successful with one of these claims.

NHS England said it was unable to comment because of “purdah” rules around the forthcoming election.