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?  The funding system for dementia care can be incredibly complicated.

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 it might make a huge difference to your life and finances and the quality of the care your loved one receives.

As local authorities struggle to meet the huge costs of funding long-term social care, the complexity of the UK’s creaking care system – and the devastating impact this has on families - is becoming increasingly apparent.

You may recall last year's  BBC drama Care, by award-winning screenwriter Jimmy McGovern, in which a single mum Jenny (played by Sheridan Smith)  was forced to give up her full-time job to care for her mum who has had a massive stroke. It's a story that still resonates with many, many families.  Old age psychiatrist Dr Tony Rao confirmed this is a sadly familiar scenario, writing on twitter ‘Just imagine if your mother had a stroke, developed dementia, is moved twice and then walks out at night. In the meantime, you’ve given up your job and also look after 2 children. That’s the reality of caring for someone with dementia.’

Many family caregivers remain convinced that the situation is made even more difficult by the amount of  misinformation – secrecy even –surrounding NHS Continuing Healthcare.  Deepika Rajani whose father suffered a catastrophic stroke, wrote on twitter: ‘We were given a number of options from the (hospital) discharge team about what our next step was. Not one of them included the chance to fill out a Continuing Healthcare form.’

NHS Continuing Healthcare is, in essence, a package of care that is arranged and funded wholly by the NHS. It’s designed for adults with health needs that are considered ‘severe’ 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 – so why is it that so many people who might be entitled to CHC don’t even know it exists?

The process of applying for it is undoubtedly challenging and can take many months - and you may only win on appeal. ‘It was extremely difficult, extremely complicated,’ one caregiver told us. ‘It seems as though the professionals are there to make it as difficult as possible.’

Unforgettable’s Caregiver in Chief Barbara Stephens believes the system is far too confusing and leads many families to wrongly assume they won’t qualify.

‘Many people believe that the nursing care the NHS pays for under the continuing care rules is for physical nursing needs. However, for people with dementia, mental health nursing needs are as important (and sometimes more important) than physical nursing needs,’ she explains.

‘Families struggle on alone in extremely difficult circumstances, not realising that this type of nursing care is available and can be funded.

‘It’s a common story that people get turned away at the first stage, when they apply for NHS Continuing Healthcare funding, without their case even reaching the panel convened by the Clinical Commissioning Group. I would encourage family carers to appeal and insist that the person they are caring for has the full assessment for Continuing Healthcare funding. There is also an appeal process. Supplying robust evidence of a person’s needs, both as a family and from third party providers, can lead to a successful outcome on appeal. ‘

Guidance documents on NHS Continuing Healthcare can be found on the government website here.

Dementia affects around 850,000 people currently in the UK and, whilst not everyone with dementia would qualify for NHS Continuing Healthcare, a significant proportion of those with a diagnosis do meet the criteria and are being denied help that would transform their lives.

Need help with Continuing Health Care? Ask Barbara

If you’d like support or advice about CHC, our Caregiver in Chief Barbara Stephens is happy to help. Please email her directly on askbarbara@unforgettable.org