Just how ill do you have to be to get CHC funding?
You never know what is round the corner and when you or a relative might need care one day, and can suddenly be hit by the reality and shock of having to fund that care and what to do when the money runs out.
Listening to BBC’s radio 4 programme, “You and Yours – Cost of care”, on 04/02/25 was another missed opportunity to shed light on NHS Continuing Healthcare funding [CHC] – a package of free NHS care at the point of need.
Although the programme was fundamentally about adult social care funding, we wonder why there is still so little mention of CHC in the public domain.
If listeners only knew that their relative might be eligible for this pot of available NHS funding, they might avoid depleting all their savings and assets to pay for their care unnecessarily.
Callers to the programme rang in to express their sheer frustration at the spiraling costs of care home fees and the burden it places on their family, and their anxiety as to its affordability in years to come, given the astronomical costs already being paid. One caller had paid £6000 a month for 5 years, which equates to over £1/3m. Some callers were paying as much as £8000 to £10,000 a month! This relentless level of cost takes some funding, and the worry for most is that the cost is only going to increase over time, and is simply unsustainable even on this current trajectory. At some stage, one caller accepted they will have no choice but to sell their property to pay for ongoing care.
All callers had a common theme of describing financial pain. Their relative had been thrifty, scrimped and saved responsibly all their life, downsized, paid taxes, planned ahead and so on, but were told they have to pay for care from private means until all their assets, savings, income and pension have been squeezed dry and eroded down to the last £23,250. Only at that point, ‘mercifully’, will the Local Authority step in to contribute towards the cost of ongoing care. But, of course, it’s not instantaneous, as some LAs will only start the means-testing assessment when you’re down to your last £23,250, and not until that point. So, there could be a gap of at least a few months to fund before the LA get their act together. But by then, there’s little left and it just doesn’t seem fair. This is not what callers envisaged in their latter years.
The disparity and unfairness is widespread and aggravated, especially when other residents in the same care home may have happily spent all their savings and paid no taxes, and yet receive identical care, and in the same care facility. What galls some, is to see their nest egg (and inheritance) disappear over time, when others who have not carefully planned and put money aside, and have enjoyed spending it, get exactly the same care.
Your relative’s assets, savings, income (including pension) and value of their home, all count towards the Local Authority means-tested financial assessment when determining your wealth. One caller described the form filling involved for LA funding as burdensome and overwhelming, incredibly complicated and difficult to understand; draining, time-consuming, struggling physically and mentally, especially at such an emotional time.
At this point, anyone who knows anything about CHC would probably have screamed at the radio… Has no one heard of CHC?!
CHC should be on everybody’s lips, but it isn’t, and no one mentioned it. Why?
One lady wrote into the programme and gave a list of her dear husband’s ailments, saying she’s already paid £162,549.25 for just 22 months’ care so far. Her elderly husband has multiple symptoms: “He can do absolutely nothing for himself except move his arms and legs, not even turning over in bed. He has dementia – it’s pretty severe. He has heart failure, prostate cancer, atrial fibrillation, hypertension and several bouts of upper respiratory tract infections. He also has to have his food pureed because of the risk of choking as he has trouble swallowing.”
The home has applied three times for Continuing Healthcare but was told that her husband is not ill enough! In response, the Presenter was aghast, exclaiming: ”How can you have more need than that?”
Here’s our transcript of what followed:
Panel guest: “Continuing healthcare is a package of social care that is funded by the NHS. It’s very difficult to get. You have to have incredibly high needs. It is often for people at end of life, although it can be for people with ongoing complex needs. You have to prove that you have a Primary Health Need, and this is where the there is a lack of very clear national eligibility criteria. So, what you find is this huge variation between what you can access if you live in one area versus another, and so, the individual, or the care home, or care provider, would apply for this funding to the NHS and then it’s only up to the NHS to make that decision.”
Presenter: “Which bit of heart failure, prostate cancer, atrial fibrillation, hypertension is not a primary healthcare need?”
At last, a specific reference to CHC a long way into the programme. In a nutshell, CHC is a free package of fully-funded care provided by the NHS. There’s no means-testing either! If you meet the eligibility criteria, you get CHC. CHC should always be the first port of call, not just when you’ve emptied your savings.
So why do all radio presenters, and indeed the press generally, typically just target social care funding? It’s not just the BBC either. Other leading radio stations like LBC, seem equally uninformed about CHC. The media and press seem transfixed with social care funding and the resulting sale of homes to pay for care. If only listeners were told about CHC, some could save an eye-watering fortune in wasted care fees, paid quite unnecessarily, and what’s more, may even be able to reclaim care fees retrospectively.
CHC isn’t widely published (especially by the NHS) and it is complex to understand and process. So, it wouldn’t surprise us to learn that the BBC researchers and presenters just don’t know enough about vital CHC funding and how listeners can access it. Not that surprising, when the NHS don’t often understand, or can’t even follow their own rules and guidance as set out in their National Framework for NHS Continuing Healthcare Funding – as our readers and contributors will testify. The BBC should have contacted us!
Revisiting the programme…
For those new to CHC, firstly, let’s correct 4 basic common misconceptions from the programme:
- ‘CHC is not a package of social care’. This is frankly misleading nonsense. Everyone knows, social care is provided by the Local Authority (and, as above, is means-tested).
- CHC, however, is a package of healthcare for adults with complex or significant health needs (that’s why it is provided by the NHS,) but includes social care and the cost of accommodation. So, in essence, CHC should pay for all assessed healthcare needs. Furthermore, it is unlawful to be asked by the care home to pay a top-up to cover any shortfall.
- CHC is not about a particular condition, diagnosis or label. It is about looking at the overall level of need, taking a holistic approach and seeing what care is required to manage it. So, unfortunately, you can be ill and have multiple needs, but still not qualify for CHC.
- CHC is not just for end-of-life either. That is typically Fast Track Funding which can be provided quickly within 48 hours of assessment. CHC is for people either living at home, in a care or nursing home or other care facility, where the primary need for care is for healthcare reasons. So individuals with significant, intense, complex, unpredictable or challenging healthcare needs may be eligible for CHC funding. In some cases, you can also recover improperly charged care fees, retrospectively.
Read these blogs below for further helpful information:
Understanding NHS Continuing Healthcare Fast Track Funding – A Comprehensive Guide
Read: How to recover care fees paid for unassessed periods of care going back to 2012
Thankfully, right at the very end of the programme, we heard from one lady who said that she had been successful in getting CHC for her husband. However, she then described the tortuous process and how she used her past experience as a Chief Officer in Local Government to prepare thoroughly for this important assessment – essentially, treating it like a court case – with detailed records of her husband’s monthly historical care. We applaud her commitment and conviction, but she is an exception, as we know from experience that many others in a similar position would have failed to achieve this successful outcome, single-handedly, without expert representation and advocacy.
Conclusion
Thousands are missing out on critical CHC funding because it isn’t given the prominence it deserves.
The cost of self-funding your relative’s care costs could potentially be avoided if only people knew about CHC and how to access it instead of being pushed down the route of self-funding.
Remember: CHC is all about health, not wealth!
Help us to spread the word and educate radio presenters about CHC. Write to the BBC and let’s try and bring CHC to the forefront, not as an afterthought. Know your rights! Perhaps, as a starter, we should send them a copy of our invaluable best-selling book, “How To Get The NHS To Pay For Care”.
Here’s a selection of relevant blogs to help you:
Read: What? You’re enquiring about care funding AND you’ve never heard of CHC!
Apply for NHS Continuing Healthcare Funding if your relative has a ‘primary health need’…
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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.
If you are equally frustrated about the CHC process or have had to sell your relative’s home to pay for their care, leave a comment below and help others avoid the same mistake…
Just another experience:
Husband has Parkinsons, Dementia, Bedbound, difficulty swallowing, sleeps most of the day and missed medication which affects wellbeing
Applied for CHC twice and got turned down ‘not deteriorated enough’.
Had a fast track appointment which was not appropriate as these are really only done if you are in the final process of dying!
Sent two complaints which take months to get a response to (did get them in the end)
Now officially End of Life and under palliative and district nurses which include injections for secretions etc. We have another CHC checklist planned with Adult Care this week so maybe third time lucky, although not holding my breath….
I truly believe it is so complex so as to avoid helping people in the most vulnerable time of their life.
My mother who had multiple complex needs was discharged from hospital to a care home and was refused CHC. A few weeks later she contracted Covid and was expected to die. The care home and GP referred mum for Fast Track CHC Funding as she was too frail to go to hospital. We were verbally told mum would get funding but unfortunately the GP filled out the wrong form. The CHC team refused to process it but didn’t tell us. The GP just shrugs and says I referred her. Everywhere was in lock down so we were in the dark and unable to visit the care home. Mum thankfully survived but was a shadow of her former self and we eventually realised the funding hadn’t happened when we got a surprise bill for over £11,000. We’ve tried to complain and ask for the funding for that period but are getting no where. No one takes responsibility for the wrong form being used.
An ICB has a responsibility under paragraph 22 of the National Framework to promote awareness of CHC and should therefore be required to inform those who may be eligible for CHC that they can make an application for it. The local authority must under s. 4 Care Act 2014 give information relating to care and support for people in their local area. Reading this literally means that it is not simply confined to social care but involves all care and support available which would include CHC. This includes financial information and this is the main point about a CHC application. Who pays. I am at present appealing to the IRP at NHS England and it has taken 2 years to get to this point. No one has ever mentioned that CHC might be available even though my father in law, for whom I have a POA, was transferred direct from hospital to a care home by the ICB/local authority because he was completely unable to function on his own due to cognitive and other problems stemming from paranoid schizophrenia. At the time of his hospital discharge he thought he was in jail and subsequently in the care home that he was in Sheffield, where he did not live and when his care home was elsewhere, on a working holiday. But is there any sanction for those who are supposed to give you this information? I can’t see one apart from formal complaint.
My mum is now paying £10,000 a month, subsidised by Funded Nursing of about £1,000 a month! She had a catastrophic stroke and she suffered emboli to her lungs too. She is paralysed on the right which includes her diaphragm and respiratory muscles with low oxygen saturation. She has discoordination of her left side so cannot use her left hand either; she is fed but if she is just left she eats from the plate like an animal! She has thickened fluids, and cannot drink unaided, she has hemianopia so cannot see out of her right eye – yet the nurses say she is not a dehydration risk! She has softened diet due to dysphagia.
She has no functional communication, it is SALT assessed as unreliable, in fact her preferred sound is “yes” which is a hindrance as people, especially nurses, feel she is agreeing or consenting. For example, can I take £10 from your purse – Yes, can I kiss you – Yes, can I touch you inappropriately – Yes! She has severe cognitive deficit and lacks mental capacity and cannot communicate or weigh up any decisions, all needs are anticipated.
She is doubly incontinent and has a very high Waterlow score meaning her skin integrity is poor and at high risk of pressure injury. She is full hoist to a specialist wheelchair as she has no sitting balance and needs a seatbelt for safety. Unsurprisingly she is now on the top dose of antidepressants medication and Butrans (morphine patch) for pain control. She is disinhibited, placing items in her mouth, and has a clear table policy to prevent her doing so. She experiences periods of altered consciousness but the nurses just say she is “sleepy”.
The CHC say she has social needs! Health needs are meant to be prevention, treatment and aftercare of illness and disease that requires interventions provided by general nursing which includes HCAs; social care is for wellbeing and independence. Social workers are meant to decide if someone has social needs or if any health needs are more than the limit of what a local authority is expected to provide. Needs that are more than incidental or ancillary are classed above the limit of a local authority, this is the law. Unfortunately social workers do not understand their position to apply “ancillary or incidental” and the law, therefore the NHS can “put” all needs upon local authorities, stating “these are complex assessments”.
As a physiotherapist married to a doctor we can categorically state these are NOT complex assessments, they are basic medical assessments, the complexity is how to portray the needs in such a downgraded manner that the CHC and NHS can claim they are not health needs, it is fraudulent behaviour. This is a national scandal, how the ICBs and the health professionals/CHC nurse assessors can sleep at night is beyond comprehension, they are worse than bad, they are dangerous; condemning the most vulnerable people to “social care” when they have valid and deserving health needs needing healthcare. These people invariably bounce into hospitals with critical end of life events from pressure injuries, chest infections, and dehydration etc. Bad placement by the CHC of health needs into social care is tantamount to NHS corporate manslaughter of the vulnerable. The NHS is not just about acute hospital care; it is the prevention, treatment and aftercare of illness and disease. Shame on anyone who “assesses” CHC as social care when it is not – karma will get you!
Father in law is under palliative care, has about 14 days left, been told to get a nursing home as we have funding. Found one but we need to top up as the funding isn’t enough. Have been told we aren’t allowed to top up and the care homes we have been given by the hospital are all in special measures. How is this even allowed? we want the best care available for the little time we have left, it’s not much to ask. ICB have been wasting time for 6 days. Others have already died in hospital because of this incompetence.