The Continuing Healthcare (CHC) system needs to be fairer - Jayne Dowle

Mohamed is calling on the government to “deliver a [CHC] system that is transparent, consistent and fair, with strong safeguards to ensure families are properly heard and that care remains in place unless there is clear evidence that someone’s needs have changed.”

CHC is two-fold, intended for those in England and Wales whose care needs are primarily health-related or if they are at the end of life, and can be delivered at home or in a care home.

If eligibility is proven, the NHS funds all assessed care costs, saving individuals and their families thousands and thousands of pounds on social care. End of life cases are far more likely to be approved; the challenge is proving that ‘health-related’ conditions qualify.

Since 2017, despite an ageing population and increasing complexity of need, the number of people eligible for CHC has fallen by more than 9 per cent, according to Mohamed’s research. Over the same period, the proportion of people found eligible after a full assessment has dropped dramatically, from around 31 per cent to just 18.6 per cent, so less than one in five successful applicants.

These figures include huge regional disparity too, with a noted postcode lottery in force. I hear too that securing CHC for loved ones with dementia is notoriously difficult; this degenerative disease is rarely classed as a ‘health need’.

And terrifyingly, CHC funded care comes with a caveat; if the receiving person’s needs are reviewed and judged to have reduced in severity, it can be suddenly withdrawn, leaving families facing a financial cliff edge.

As the story of Karen Hargrave’s husband James shows, too often it ends up being all about the money. The couple own a flat that they couldn’t live in when James started suffering from ME (chronic fatigue syndrome) after he had contracted Covid. This was treated as an asset, so social care funding wasn’t available. Karen is facing barrier after barrier to secure CHC.

In March, the House of Commons was told by Ayoub Khan, the Independent MP for Birmingham Perry Barr, that CHC was created to protect those with the most severe and complex needs, “but today it often does the opposite: it confuses, delays and denies”.

He said: “CHC is a lifeline for people with the most complex, severe and often life-limiting conditions, making it all the more crippling when funding is stripped at short notice without a clear reason, and yet there is a body of evidence, which is growing year on year, to suggest that the system is unfair, inconsistent and often inaccessible to those who need it most.”

I could not agree more with these two outspoken Independent politicians. There is absolutely no guarantee that a doctor or care professional will bring up the possibility of applying for CHC for your loved one; more likely, you have to seek it out yourself and ask for an assessment.

When my mother, with cerebral degeneration and COPD, constant bouts of delirium, refusing to eat and drink, bed-ridden with her skin tissue in tatters, was in hospital for months in the summer of 2024, we only learned of CHC because a friend told us about it.

And so we did the research, learned the terms, and attempted the process. Mum’s hospital social worker agreed to the first step, completing a checklist to identify difficulties with breathing, cognition and mobility, amongst other conditions.

Then came the full assessment with a multi-disciplinary team (MDT) in the form of a meeting, which included a stern independent adjudicator who never smiled once throughout the entire hour and a half. This assessment relies on a ‘Decision Support Tool’ which grades symptoms for their severity. Not severe enough, we were told, to qualify for CHC.

As a family, we were left feeling traumatised by the whole experience, even guilty for having the temerity to enquire in the first place.

Prime Minister Andy Burnham has vowed to tackle social care and deliver a service which mirrors the NHS. If so, the entire corrosive CHC system should be disbanded and incorporated into a brand-new assessment for each individual who requires care. It should never, ever be a tick-box exercise, but carried out with compassion and understanding. Care should mean care, in the widest sense.