Why the NHS is unfairly rejecting you for help with your loved one’s care fees – and how to fix it: Whistleblower reveals horrific reasons that can leave you thousands out of pocket

The NHS offers full funding for people who need to live in a care home or have home carer visits – so long as they meet the criteria for what is called continuing healthcare. It is not means tested.

But just 17 per cent of those who applied through the standard assessment process were deemed eligible for the funding, according to the latest NHS England data.

The Mail on Sunday has previously revealed that thousands of families are having funding for their elderly relatives wrongly removed during ‘reassessments’ and face costly appeals to have it reinstated.

Those who are denied the funding they are entitled to end up unfairly paying out tens or even hundreds of thousands of pounds themselves in care home fees – often crippling their own and their family’s finances.

Now, speaking on condition of anonymity, a whistleblower who has seen first-hand what goes on blows the lid on a system that many say is being rigged against them. And he reveals what you can do to maximise your chances of getting the funding your loved one deserves.

For years I worked at the heart of the system that decides who gets their care costs paid for and who doesn’t. Some of what I witnessed was horrifying.

I sat on a panel that heard appeals from families and vulnerable people who had been refused funding called Continuing Healthcare (CHC). This funding is paid for out of the budget of the local NHS Integrated Care Board.

By the time I saw families, they were often at their wit’s end, having gone through a process that I can say is categorically unfair and lacks compassion.

Anyone trying to secure the funding must first have an initial assessment to judge whether they are eligible. These are carried out by a nurse assessor, working for the local care board, and there should also be a social worker from the local authority present.

A glance at national statistics shows that securing this financial help really is a postcode lottery.

NHS Staffordshire has approved funding for 16 people per 50,000 of the population. Next door, NHS Shropshire approves 95 per 50,000.

In recent years, CHC awards have been on a downward trend. I believe this is due to constant pressure from NHS England to contain budgets and deliver savings. It has created a hugely flawed system that is painstakingly bureaucratic and can let down those who need it most.

Anyone who has been rejected for funding can appeal. This is where I would usually come in as I sat on the appeal panel.

There were three of us on the panel: an independent chair who was appointed by NHS England, a senior nurse assessor or manager skilled in CHC – they would come from a different care board to the one involved in the initial CHC assessment. 

The third panel member was from a local authority, and also had not been involved in the initial assessment. Many of the complaints I dealt with at appeal hearings concerned families who said they were not properly listened to at the earlier meeting.

A common theme was a complete lack of compassion. People felt their hard work had been minimised. Often, at the end of the appeal, families in distress would say that it was the first time they felt they’d been listened to.

In some cases, they hadn’t been present when the initial decision meeting took place because they weren’t told about it. This is absolutely wrong.

Some of those who were most likely to be rejected were family members who had done most to care for a loved one by themselves. One case that sticks with me was a woman who looked after her husband who had advanced dementia. 

She had to anticipate his every want and need 24 hours a day, seven days a week, and second guess the responses he would give, because he could become quite frustrated and verbally aggressive. It was stressful and traumatic for her.

Part of the reason her claim for funding had been rejected was that she did not have evidence of what she was doing in writing.

She didn’t have ‘incident logs’, she was told. And why should she? Families don’t keep care notes. The care board often discounted this as evidence because it was not down on paper. In many cases I saw, they would decide there was ‘no evidence of serious care needs’, as a result.

Families caring for a loved one themselves or self-funding the fees of a care home might never have interacted with social services, leaving them at another disadvantage at these meetings.

One of the most important things you can do is have a social worker familiar with your case and the workings of the CHC process, but local authorities won’t necessarily put up a social worker.

It’s a very technical decision and you need people who know the right questions to ask.

Some of these families would never be seen by us at the appeals panel as they might have decided the process was a pile of rubbish and given up. And who could blame them? The appeal process is far too daunting. 

First, you must argue your case in front of the people who assessed and rejected you in the first place. And if it’s been a process that you feel was horrible, you’re unlikely to complain unless you’re angry. As time has gone on, it’s become harder for nurse assessors to persuade their manager that someone is eligible for the funding.

There’s a conflict of interest because the managers who are driving quality control at care boards are also running the budgets. This means they are the very people who are being held to account by NHS England for making savings year on year.

A Department for Health and Social Care spokesman says: ‘We provide detailed guidance on how eligibility for NHS Continuing Healthcare should be determined, including how assessments should be conducted.

‘As part of our ten-year health plan we will shift more healthcare out of hospitals and into the community, to ensure patients and their families can access care where and when they need it.’

As told to ANDREW PENMAN