Why do some people with dementia have to sell their homes to pay for care, whilst others find all their costs are paid for by the NHS? This week a hard-hitting documentary uncovered the shocking truth

If you’re caring for someone with dementia and haven’t heard of something called NHS Continuing Healthcare (also known as CHC) it’s time you did. For, as Channel 4’s Dispatches revealed this week, it might make a huge difference to your life and finances.

As local authorities struggle to meet the huge costs of funding long term social care, the complexity of the UK’s creaking care system was laid bare on Monday evening in a powerful Ch4 documentary How to Avoid the Dementia Tax.

The title was slightly misleading, because the focus of the programme was not on the so-called Dementia Tax but on NHS Continuing Healthcare (CHC). NHS Continuing Health Care is, in essence, a package of care that is arranged and funded solely by the NHS. It’s designed for adults with health problems that are considered ‘sever’ and can include people with dementia. Since CHC isn’t means-tested, if you do manage to qualify for it you won’t have to sell your home to pay for care, or use up all your savings because all your care costs will be funded by the NHS.

CHC is basically, ‘a pot of money that pays for everything,’ Dispatches reporter Tazeen Ahmad explained. However, many of the people who might be entitled to CHC don’t even know it exists. In fact, the two people featured in the documentary (who now receive CHC) only found out about the fund by chance.

Wendy Burt’s husband David was diagnosed with dementia seven years ago. When David needed to move into a care home, the local authority told Wendy she must pay the £4000 a month fee from savings. ‘I only heard about NHS Continuing Health Care at a coffee morning,’ Wendy said.

She decided to apply for it, but the process was challenging. ‘It was extremely difficult, extremely complicated. It seems as though the professionals are there to make it as difficult as possible,’ Wendy recalled. When her application was turned down, Wendy didn’t give up (though many others might). Eventually after eight long months, she won on appeal and also received an apology for the way she’d been treated.

But Wendy’s case was far from unusual. When Graeme Hick’s mum needed to go into a care home, Graeme assumed they’d have to pay the fees themselves. It was only six months later (after already paying £7,000 in fees) that he discovered his mum was in fact eligible for CHC and entitled to a full refund of the fees she’d already paid.

However, although the money was refunded, Graeme was shocked when his mum’s care home then asked him to pay a ‘top up fee.’ Care homes, Dispatches revealed, should not ask people receiving CHC to pay top up fees, though it seems that many do. When Graeme refused to pay the top up fee, the care home withdrew the demand.

So why is NHS Continuing Healthcare so difficult to find and to access? Partly, It’s because it’s funded region by region. Applicants are assessed by local professionals (Commissioning Care Groups) who must decide whether the claimant has needs which can be classed as ‘severe.’ ‘One person’s interpretation of ‘severe need’ could be different to another,’ a nurse who had worked on these assessments explained. ‘Different areas interpret the guidance in different ways.’

The guidance document for Continuing Healthcare is more than 140 pages long , proof perhaps of its inherent complexity. It certainly seems as if regional differences – in effect a postcode lottery - might also be preventing some people who deserve CHC from getting it.

Stephen Roberts experienced this first hand when his mum Ethel, who has vascular dementia, was forced to move from one care home to another. Ethel was receiving CHC at a care home in Lewisham, South London (though only after a long and arduous application process). However, when another resident attacked her in the care home, Ethel moved to different home two miles away in Bromley. This meant that her funding was now the responsibility of Bromley Care Commissioning Group which carried out its own assessment… and decided that Ethel was not entitled to CHC. Stephen is now selling Ethel’s home of 50 years to pay for her care.

The NHS is of course under increasing pressure to cut costs, and NHS Continuing Healthcare is expensive - last year, it cost the NHS a staggering £3.1billion. Radical change of the entire system is clearly required. Until then, it seems that family carers like Wendy, Graeme and Stephen will continue to struggle with a system no longer fit for purpose.

Dispatches How to Avoid the Dementia Tax is available to watch here