Has anyone successfully appealed CHC funding for a parent in nursing care?

[HazzleMcDazzle]

88 year old DM had a catastrophic stroke a few months ago which has left her completely unable to move independently and doubly incontinent. She cannot swallow so is now fed via a PEG tube, which leaves her at risk of aspiration pneumonia (which has already hospitalised her since the tube was inserted), and has stroke-induced dementia, with visual hallucinations. Most of the time she has no idea where she is or what's going on around her.

She was admitted to a nursing home around 6 weeks after the stroke as she now needs 24-hour care, and will do for the rest of her life. Despite all this we've just had CHC funding refused as she doesn't apparently meet the threshold. We're now faced with selling everything she owns in order to pay for the care home fees which, minus the pitiful nursing contribution paid by the LA, will be about £1800 per week. To say we're extremely stressed about this would be a massive understatement.

Has anyone successfully appealed a CHC funding decision based on circumstances like DM's? We're going ahead with this but have no idea where to start - the whole care/funding system seems designed to wear you down physically and emotionally and I'm so tired of fighting one battle after another 😔. TIA.

I’m so sorry. More qualified people will be along in a minute to help but I wanted to say you are not alone.

I have experience of relatives getting CHC twice, and in both cases the applications were completed on their behalf by healthcare professionals - a Macmillan nurse in the case of DH, and a hospital palliative care nurse in the case of DF. I’m a bit fuzzy on the process as they were both extremely distressing circumstances but my understanding is that the unpredictability of the patient’s needs was one of the key factors. It wasn’t solely about how serious their condition was. Also, I seem to remember that the process was set up to exclude dementia as an assessable factor - I assume simply for cost reasons.

I do know that it is very hard to receive the funding. I’d advise asking if there is a medical person involved in her care who can help complete the forms.

Unfortunately the bar for full CHC funding is very high - limited NHS funds so they will only award to a few people. Were you at the assessment meeting? Have you seen the reasons given for refusing funding and their criteria for awarding it? You need to have a copy of the criteria and then demonstrate (using medical records and care home records) that your Mum meets those criteria. Good luck.

It's about the unpredictability of a condition. The criteria/threshold is very high.

Does she own her own home? If so, that can be sold to pay the care home fees. Very sadly the average length of stay in a nursing home is usually shorter than the value of the property, so the value of her home should cover the fees. BTW, the nursing contribution is paid by the NHS not the LA.

I'm very sorry your mother is so unwell, it must be very stressful

We had the same situation with my MIL, the worst type of stroke and same resulting issues as you have with your DM. We got turned down for CHC which I have to say I was expecting having looked in to who qualifies. Therefore, we didn't appeal.
It isn't just based on the needs of the patient. In both our cases, these are seen as quite standard caring needs I think.
It is such a horrible situation, you have my greatest sympathy.

I appealed this on behalf of a friends father who had also had a catastrophic stroke . He was only mid 60s so could easily of lived a very long time in nursing care. The first appeal failed when the health assessment came back with the ridiculous assertion that he didn’t qualify as he could sit in a chair ! We continued the fight as this had no baring on his medical needs. Practically anyone can sit in a chair - if like him you were hoisted into it and propped up. The successful outcome came about because he was peg fed and this needed to be done by medically qualified staff and was considered a regular medical intervention that he could not live without. He lived another 8 years which would have cost him hundreds of thousands. This was in 2004. He died in 2012 and qualified until he died. They really didn’t want to ‘allow it’ though and was quite the fight.

MIL was the same after a severe stroke, no CHC funding as her condition was stable and didn't need regular nursing care. FIL had metastatic prostate cancer and his intolerance of pain relief (gave him severe vomiting and diarrhea) meant his diabetes and heart condition were difficult to manage and he needed twice daily visits from the district nurse/diabetic nurse so he did get it because he needed daily nursing decisions and medication adjustments not routine care.

Thanks all, the replies, advice and empathy are much appreciated. DM does own her own home but it's in such a state as she was a hoarder and has been quite immobile (although otherwise healthy) for years, and was generally in denial about how bad a condition it's in. It'll take ages to get to a basic saleable condition, and I think fees will kick in soon. As an added complication, I part-own the property following DF's death around 20 years ago. It's so hard trying to navigate all this whilst grieving for someone while they're still alive, I'm sure there are many of us feeling equally broken by the system

Hi, I only have experience of unsuccessfully appealing I’m afraid. It was for my dm who had multiple needs and it seemed ridiculous to me she didn’t get it. It was finally awarded the day before she passed away but yes we had to sell her house to fund her care in the end.

Is she not eligible for LA funding until the house sells?

That does sound difficult OP. My advice (I'm a former Older People's Social Worker) would be to get a specialist clearance firm in to clear the property and then sell it to a builder/developer. HOWEVER, we always advise people to get independent financial advice on how to cover care home fees if they are self funding..

This sounds a horrible situation OP for you and your DM. Unfortunately on the description you have given, it is very unlikely that she qualifies for CHC as the bar is set very high.

I think @SchrodingersKitty is referring to Fast Track CHC which can be awarded for those with a very short prognosis and has a lot less assessment involved.

The full CHC assessment is very time consuming, onerous and rarely successful. There are 2 stages - completing a Checklist and then the Decision Support Tool.

The bar for the Checklist is much lower than the Decision Support Tool so it sometimes raises hopes that CHC will be awarded.

Get a specialist solicitor to advise. A family member of mine had her mother’s CHC funding application refused. She instructed solicitors and was successful.

I suggest you look at the Pam Coughlan case. On paper, she didn’t meet the criteria; but the judge looked at the overall impact of her conditions and decided she did on that basis.

Thanks everyone - you've all given me lots to think about going forward

@HazzleMcDazzle so sorry you are in this situation. You will find lots of good advice and support on here. Also consider joining us over on https://www.mumsnet.com/talk/elderly_parents/5503705-cockroach-cafe-spring-to-summer-2026

Great place to vent. Hope you get some advice and support you need. 💐

Thanks @BlueLegume - will definitely join you over at the Cockroach Cafe 🙂

name changed for obvious reasons. I know the CHC process v well (work within it!).
Eligibility is decided by the Nature Intensity Complexity and Unpredictability of needs.
Nature includes the stability of need and condition, decline, skills needed, etc.
Intensity generally involves the type, duration and frequency of need interventions.
Complexity is looking a lot at interrelated needs which adds significantly to the complexity of meeting the needs.
Unpredictability looks at rapidly changing needs which have to met by changing the care needed to meet the needs. Also the frequency etc of this happening.
can the needs be met under the social care legislation? If it is above that threshold then a Primary Health Need is present.
its so complex as there’s not a clear definition of PHN.
There are loads more questions for each part of the NICU which are looked at.
have a look at the National chc framework. There are some good CHC Facebook groups which give free advice.
All the best with it.

I’m sorry you are going through this. It’s terrible.

The system is rigged so that you suffer as much distress as possible whilst being gaslighted by the CHC assessors and private nursing homes. The CHC assessors will knowingly and purposely manipulate information and situations so that they don’t have to grant CHC funding. The nursing home owners don’t want you to get it either - if you do get it that means they only receive the lower LA rate. If you don’t get it they get to wrongly keep the nursing element AND you pay them private funded rate on top. You’ll find the nursing home will be extremely passive and do the bare minimum to prepare for the CHC assessment meeting.

I could write a book on this but here is my own experience. DM - she absconded from the nursing home and got a connecting bus to a destination 15 miles away. Complete chaos ensued. I had been begging the nursing home for a scan because I’d been telling them for months she had dementia and this behaviour was WILD for my DM and a sign she was delirious and confused. The CHC assessor gleefully seized on this information and wrote that DM was so mobile and socially capable that she went for social meet ups with friend via bus. This was so far from the truth it was sickening. Two months later when she was at a different care home I finally got a diagnosis for her of mixed dementia. And her risky behaviour was deemed to due to delirium.

MIL entered a nursing home with a diagnosis of Alzheimer’s. She was extremely violent. The behaviour element is pretty much the only area which you have a chance at getting CHC funding for when it comes to dementia. She met all the criteria. So they doubled her antipsychotic medication to medicate the behaviour out of her, and then declared she had no behavioural needs. She is pretty much a highly sedated shell of a woman now due to that drugs and they are all happy because they can say she has no needs.
We asked them not to drug her to that extent but they don’t care - even when you have POA.

There was far more to how much the assessors deliberately misrepresented my relatives’ primary health needs to avoid funding them, but the two aspects above are the ones that really stuck in my throat.

Sitting in two CHC assessment meetings and having to sit and listen to professionals lie and manipulate to avoid funding is one of the most distressing experiences of my entire carers history. I can’t believe what they get away with.

@greenappletasty thanks for sharing your experience. I'm so sorry, that all sounds utterly horrendous and deeply distressing for everyone concerned. I agree, our experience with CHC so far has felt like an exercise in gaslighting and minimising. It's something that I wouldn't have believed was possible before going through the process.

Another daughter of a stroke victim here. And no, appeal wasn't granted.

Basically, if the person doesn't need constant nursing/medical attention (as opposed to care that can be carried out by a carer, with occasional nurse supervision) you've no chance.

Having a serious stroke is catastrophic for both the person and their family.

Unfortunately in CHC terms, the care needed by the person is not complex - washing, dressing, turning, running a PEG feed, routine skin care etc. None of these score above a low needs on the DST.

Non-problematic peg: moderate
preventat skin care several times a day: moderate
Did you question Low level on those?

@FundingNightmare - DM's score for nutrition was High (due to PEG/dysphagia and risk of aspiration), and for skin integrity it was moderate. She had two scores of High and five Moderate across all categories. And I think a couple of the others were downplayed/minimised

You most likely won’t be able to sell the home, she will need a financial assessment from the LA. Thus was the situation my stepfather was in. The LA ended up disregarding his share of the home as his share was only worth about £25k.

Beacon are very good - both in terms of the free resources and their charged for services. You can get 90 minutes free advice but obviously check resources so you don't waste that time. I haven't used them myself but regularly refer to them via my job. Beacon CHC