There was an excellent item featured on Channel 4 News on 11th October 2021, which highlighted the shortcomings of the complex NHS Continuing Healthcare process (‘CHC’).
In case you missed it, here’s our transcript of the programme presented by Victoria Macdonald, Health and Social Care Editor entitled: “Elderly people with complex health needs being denied free care.”
“Macdonald: The continuing healthcare scheme was set up to allow people with long–term complex health need to qualify for free care, funded by NHS England. But, because of the strict assessment rules, tens of thousands of people who apply each year are turned down.
Macdonald: 89-year-old, Sheila Kidd is unable to feed herself, is bed bound, doubly incontinent, can’t communicate, becomes anxious and distressed. The once vibrant, infant schoolteacher seen here in better times, has dementia and is in a care home.
Her daughter: Pretty much everything in my mum’s life has to be managed and done by other people, apart from breathing.
Macdonald: And for nearly 2 ½ years, Mrs Kidd’s needs were considered so great she was given Continuing Healthcare or CHC funding – a recognition that she needed more than just social care. Now, it has been taken off her.
Daughter: That range of need should mean that somebody is eligible for healthcare, but the bar is high, and the way they make that bar high is by saying, yes, those needs have to have the complexity and intensity and/or the unpredictability in order for it to be defined as a health need.
Macdonald: And the bar would indeed appear to be set high. Those who are days or weeks from dying are assessed on a fast-track system , anybody else, even if they appear as helpless as Mrs Kidd – it is a standard assessment.
For the first quarter of 2021/22 [April to June], the total number of people assessed for NHS CHC was 36,866 – nearly 23,000 [22,874] were via the fast track and they were all successful [ie all awarded funding]; but of the nearly 14,000 [13,992] via the standard assessment route, only 3,424 were awarded funding.
For all the talk recently about reforming the NHS and social care systems, making them more joined up, CHC funding falls into a grey area between the two, and it’s highly complex – both to apply for, and to appeal against, when funding has been removed or denied; and then there’s the postcode lottery – in some parts of the country you are 17 times more likely to be awarded CHC funding than in other parts of the country.
“Best kept secret in the NHS”
Admiral Mathias: Well, my involvement in CHC goes back to my mother’s case and she had very, very severe dementia and she was in a nursing home before she died for a total of 4 years and I’d never heard of CHC funding, referred to as the best kept secret in the NHS.
Macdonald: Retired rear Admiral Philip Matthias fought the system and won £200,000 back pay for his mother’s care; now he is waiting for an appeal allowing a judicial review into the way decisions are made across England.
Admiral Mathias: I have experience of operating a high level in the Ministry of Defence. I’ve got very good analytical skills. I’m a confident type person, and if I struggled over 2 years to win my mother’s case, I just thought how on earth can these tens of thousands of people, ordinary people, who are busy, how do they manage? And, of course, they don’t. So, my motivation was entirely based upon outrage in terms of the injustice and unlawfulness of the system.
Macdonald: Clinical Commissioning Groups are responsible for the funding and would dispute that they act unlawfully. But this is what one former assessor has now told us.
“I didn’t feel I could be part of that”
CCG Assessor: For me, it felt like my job was to prove someone didn’t warrant getting CHC… I had to find the reasons someone wasn’t meeting the criteria… I have my professional ethics, and I would look at a system I felt was letting people down… In the end I didn’t feel I could be a part of that.
Dan Harbour: We need to stand back and look at the national data set and ask ourselves why there are more people being assessed now than there have been and yet there are fewer people eligible today than there were just a few years ago.
Macdonald: Mrs Kidd’s family are now appealing the decision to remove her funding, although the Clinical Commissioning Group which assessed her, said: Funding is granted according to a nationally set criteria, which looks at a person’s current needs, rather than a long-term diagnosis or health condition. And NHS England said the criteria was to ensure funding decisions were consistent across the country. A statement disputed by many of the families now seeking help.”
Here’s a link to the actual news item:
Firstly, a big ‘thank you’ to Channel 4 for raising more awareness of the complex issues surrounding CHC funding.
Sadly, the Channel 4 item is not news to us! Our numerous daily enquirers, contributors to our Facebook page and those who kindly post replies to our blogs, all convey a similar theme. Sheer frustration at the complexity of the CHC assessment system. A sense of injustice for those clearly entitled to CHC who are being refused. And the inconsistency of approach adopted by Clinical Commissioning Groups throughout England and Wales.
Many families are being let down by a system that is supposed to support them in their time of need. Instead, if CHC is turned down or existing funding is withdrawn, many thousands of individuals may well end up paying for their own care quite unnecessarily and even having to sell their home to pay for it.
Channel 4 item correctly states that the bar to accessing CHC funding is set very high. It is not just about a specific condition or diagnosis. It is also about how those healthcare needs are managed on a daily basis.
We know just how difficult, complex and frustrating the whole CHC assessment and appeal process is!
You don’t have to fight this battle alone.
If you need help, call us now on 0161 979 0430 or email your enquiry to firstname.lastname@example.org
If you want to speak to a specialist CHC nurse or just get some general advice about any stage of your case, visit our Advice Line Services or else get 1-2-1 expert legal support and advocacy help with your assessment or appeal.
Here are some related blogs from our Care To Be Different website to help you in the meantime:
If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.