CHC - to appeal or not to appeal? That is the question!

[MerryBlueBird]

I sat through a 3 hours CHC meeting for my dad who was discharged to a nursing home for assessment.The social worker told me before that he'd need to get an S and 4 H's to qualify.

He has dementia (and rheumatic fever in the past) is always falling over so has a myriad of health problems including prostate problems and rectal cancer.

He was awarded FNC not CHC. I don't know if it's worth appealing. He has lost 24% of his body weight in the last year and 15% in the last 7 weeks ie off an already thin frame. Their BMI calculation was wrong as he's taller than they said. But, he got a H for nutrition anyway so there doesn't seem much point in pursuing that point.

I was however trying to get him a high score for behaviour and I pointed out his past verbal aggression, restlessness and wandering and hinted at his wanting to end it all. This latter point was not recorded or taken seriously. After the meeting he spelt out to me twice his suicidal thoughts and depression but only verbally to family not care home staff.

Is there any point in appealing, do you think? Really, are the only grounds are his risk of suicide?

He's lost a lot of weight recently which was under estimated and the prostate problems and bowel cancer make him doubly incontinent. He refuses to eat and drink much but the care home don't record the actual amount consumed, just what is given to him.

His thinness will obviously impact on his skin and cognition and psycho/emotional health but again I'm not sure it's worth appealing on nutrition grounds unless I link it to his behaviour ie not eating much. I have no proof of his intentions to kill himself as he hasn't told care staff.

I have been told unofficially that CHC is 'tight' in the area and dad isn't ill enough to qualify. Nor for fast track. Yet.

He has dementia (and rheumatic fever in the past) is always falling over so has a myriad of health problems.

My husband says not to appeal as it's too much stress and the system is set up to ensure I fail. He may well be right but any thoughts welcomed.

The scores are:

Breathing - none

Nutrition - Food and Drink - high

Continence- moderate

Skin (including tissue viability) - moderate

Mobility - high

Communication - moderate

Psychological Emotional - moderate

Cognition - severe

Behaviour - no needs

Drug therapies and medication: Symptom Control - low

Altered states of consciousness - no needs

Other significant care needs - none

These are the criteria for behaviour:
’Challenging’ behaviour of type and/or frequency that poses a predictable risk to self, others or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.
High

‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.
Severe

‘Challenging’ behaviour of a severity and/or frequency and/or unpredictability that presents an immediate and serious risk to self, others or property. The risks are so serious that they require access to an immediate and skilled response at all times for safe care.
Priority

I'm sorry as I know how unfair it all feels. However, CHC is notoriously difficult to get. There has to be a primary medical need that can only be met by nurses/doctors. His needs, as you've described them, can be met by carers therefore he won't qualify. At the moment, he needs social care, not medical. Often CHC is only awarded when a person has only weeks to live and rarely even then.

I wouldn’t bother. They will just up his antipsychotics to ‘drug’ the behaviour out of him and remove the funding 12 weeks later, even if they granted it at first.

What a sad indictment of Britain in 2026 that you feel able to write such a thing.

It's not legal for Local Authorities to provide for people if there is clear evidence that the individual’s nursing needs are more than merely incidental or ancillary to the provision of their accommodation.

He isn't on such drugs but I did worry they'd put him on something that would dampen his personality and put more money in the coffers of the drug companies. The system would sanction that, of course.

I would definitely appeal. I did get CHC awarded for my mum, soon to be reviewed.
if you put all of his conditions into chat gpt it will tell you how to phrase things to score higher.
have staff at home helped, ours were really good at arguing mum into higher scores.
The success rate at appeal is much higher than initial application.
good luck

Well done! I don't feel the staff at the care home have been helpful in that they are not really involved apart from the management who get more money if the family pay their fees. Thank you so much for your post as it gives me hope that common sense and justice will prevail.

Yes, appeal, appeal, appeal!

PPs are correct, it is notoriously hard to get but that doesn’t mean people don’t qualify.

If you have the fight in you and you know your father’s conditions fit the criteria then definitely appeal.

We had a long fight and had to appeal. We eventually got our MP involved, who was really helpful and wrote to CHC.

It’s in their interest to refuse funding and that’s why practically everyone fails first time. Most people are so ground down and worn out that they accept the decision.

Good luck.

@MerryBlueBird I’m grateful for
your OP as it explains a lot about CHC. I am clueless about it all. My mother has just been refused funding.

My mother is estimated to have 3 months max to live. She has a fast growing high grade brain tumour. The tumour has already robbed her of her right arm
and leg. She has now 3 different eye conditions rendering her near blind and is very deaf even with hearing aids. The discharge letter also mentions she has a fractured pubis bone. Plus she has a lesion on her right kidney that may or may not also be cancerous. She is not
a candidate for surgery. And now her ability to speak is going.

So even with weeks to live she has no funding.
Too sick to live at home not sick enough for hospice. I have booked her into a luxurious nursing home. She is not enjoying it. She is depressed and shocked her life has gone this way.

Wishing you all the best for your Dad. Dementia is cruel

Thank you. Glad I helped a little. It really is an area that I have had to learn about but it is very distressing as the system is set up to allow local authorities to break the law. Legally they shouldn't be taking responsibility for people who should be the responsibility of the NHS. Pamela Coughlan proved that.

In your case, it might be worth considering applying for fast track funding. The care home could do this. Fast-track funding is for those whose conditions are rapidly deteriorating or are approaching a terminal phase.

https://www.gov.uk/government/publications/nhs-continuing-healthcare-fast-track-pathway-tool/fast-track-pathway-tool-for-nhs-continuing-healthcare-guidance#:~:text=The%20fast%2Dtrack%20pathway%20tool%20must,be%20entering%20a%20terminal%20phase.

It's about his current presenting needs and nature, complexity, intensity and unpredictability of those needs. Diagnoses themselves aren't relevant it's about the impact of the person's nursing needs on how care can be provided.

How he has presented in the past (e.g. wandering/verbal agression) is irrelevant if he isn't presenting that way now I'm afraid (and would probably only score a low anyway).

The issue around his low mood and verbalising wanting to end it will have been recorded in the psychological and emotional domain rather than the behaviour domain - from what you have said he got moderate in that domain which would indicate that it was accounted for.

CHC funding is for people where their nursing needs are over and above what can be provided within the standard funding provided for nursing care (FNC). It's for people who's nursing needs are so complex or unpredictable or intense that they require additional resource or a specialist or higher level of care than the norm - to the extent that their health needs exceed their social care needs. Do you feel this describes the level of nursing care provided to your dad?

You are correct that it's not lawful for social care to take responsibility for nursing needs and this is why the funded nursing contribution exists - for the NHS to fund the nursing needs someone may have ancillary to their social care needs.

Unless it can be shown that the process hasn't been correctly completed then its unlikely an appeal will be successful unfortunately.

I got my mum fast tracked and then they took it away again as she didn’t die fast enough. It’s scandalous. I didn’t appeal in the end as I was quite busy with my actively dying mother.

I'm sorry to hear that.

Fast Track CHC is an entirely different funding stream to fully funded continuing health care with different rules about when it is applied and how it is reviewed/appealed.

This is exactly why people should be able to choose how they end their life! It’s awful to read some of this. Frankly, no one cares and if you have money it’s DIY. There’s no good death if you are ill. Most people I know have witnessed relatives have awful lingering deaths. We don’t want it for ourselves yet we have to put up with people saying end of life/palliative care is what we should all assure to. In their dreams. Save up for Switzerland. We need the law changed to respect personal choice. Not the choice of palliative care practitioners who your loved one will never see! Let alone the church! With more of us getting old and “living” longer, it’s urgent.