“RACHEL MORTIMER | ASSISTANT MONEY EDITOR
Why don’t the seriously ill get the free care they’re entitled to.
It is back to business as usual this weekend after the festive season. But while many of us will have spent the past couple of weeks having a joyous time with their loved ones, this may have sown the seeds of new worries.When families come together at the end of the year it can become acutely apparent how older members or those struggling with ill health have deteriorated — and how other relatives are finding it hard to cope as carers. Some unpaid carers do not feel comfortable asking for help, but many others do not know what support is available to them. The understanding of care in this country is murky, and few know what they are entitled to. Too many assume that they will get no support from the state if they fall ill and require care, or mistakenly believe that they will need to forfeit their home to qualify. • Dad died before he got his NHS care fundingSeriously ill adults with complex health needs should be entitled to free care, at home or in a care or nursing home. This is called NHS continuing healthcare in England, Wales and Northern Ireland — it was available in Scotland until 2015 but has since evolved into hospital-based complex clinical care, which can be offered only in a hospital setting. ADVERTISEMENTCrucially, NHS continuing healthcare is not means-tested and a person’s assets are not taken into consideration when it is decided whether they qualify for funding. You could have £5 or £500,000 in the bank, your entitlement to free care is the same. The funding can be life changing. The average weekly cost of a nursing home was £1,241 in November, according to the Office for National Statistics. A year in a typical nursing home is likely to cost more than £64,000, a sum that would make short work of the most diligently saved nest eggs. Eligibility depends on having a “primary health need” because of illness — those who require social care because of old age and frailty will not qualify. • The £61,000-a-year care cost crisisNHS continuing healthcare is hard to secure, however. Almost 49,000 people in England were assessed for it in its standard form in 2022-23 but only 22 per cent were deemed eligible, according to NHS England statistics. In England, applications are assessed by local integrated care boards rather than by a central NHS body, and each interprets eligibility differently, creating a postcode lottery. What qualifies as a primary health need in Surrey may not get you funding next door in Hampshire. Those who have cognitive conditions such as dementia are at particular risk of falling through the cracks and the complexity of their needs can be missed during funding assessments. Perhaps it is because of this ambiguity and the strikingly low success rate of applicants that NHS continuing healthcare is so little known among those who need it most. I spoke with one reader this year who hadn’t heard of the funding despite her father having been in and out of hospital for six months before having dementia diagnosed last year. He had worked until he was 79 and paid taxes for decades, only to be kept in the dark about crucial support in his hour of need. Something has gone very wrong when patients who could be entitled to life-changing care funding are not given the opportunity to apply for it. And if they do apply and are rejected too many assume that the NHS must be right, when this is often not the case. The NHS has been forced to pay back millions of pounds after patients — or someone acting on their behalf, such as a relative, charity or lawyer — have appealed against an unsuccessful care application. You have six months to lodge an appeal, and you can secure retrospective funding dating back years. • ‘How we got £90,000 back in care home fees’I spoke with one man who won back £250,000 in wrongly paid care fees for his mother. But his fight for NHS continuing healthcare took the best part of a decade, and the refund came six years after his mother’s death. This is a sad reality. There are too many cases where relatives have spent the final years of their loved one’s life appealing against incorrect funding decisions — taking up precious time and energy that could be spent with family — only for the NHS to finally admit it got the decision wrong after the patient has died.ADVERTISEMENTSo many people who should get help with their care will be incredibly vulnerable and without a relative or friend to fight their corner. They face raiding their savings and selling their home to pay for care that they should be getting free.Applying for NHS continuing healthcare and appealing against rejections are gruelling and time-consuming. You need to navigate a labyrinth of red tape. But regardless of whether you decide to apply, it is your right to know that this funding is available. If you know someone who is severely ill and might need care now or in the future, put NHS continuing healthcare on their radar. It could transform their quality of life.”
I am glad to see that The Times has caught up with my earlier comments on this little publicised issue.
The NHS does not advise patients about the availability of continuing health care payments because it costs them money. Nursing homes do not publicise their availability because self-funding patients subsidise those who have been means tested and are paid for at a lower rate by their local authority therefore the fewer receiving continuing health care payments the higher is the income of the nursing home.
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