Has anyone ever got CHC funding?

[I8toys]

We have a meeting at NH next week for MIL. Has anyone ever managed to achieve the unattainable? And how?

Someone who is on a locked ward wouldn’t be paying anything as their treatment comes under NHS funding.

Thank you for the advice/information. It’s such a stressful time as mom is at end of life, but battling on- bless her.

I wish you every success in getting funding, OP, but don't hold out too much hope. From what you said, my Mum was very similar to yours, but was refused funding. I was in the process of preparing to appeal when she had a massive stroke and died three weeks later. I carried on with the appeal as a matter of principle because she would have been so horrified that she was paying £1500 per week for her care home. Her dementia fell off a cliff edge two months before she went into the home because of the way that Bexley social services treated her which ended up with her being readmitted to hospital with full blown delirium, to the point where it took four members of staff to restrain a frail 95 year old woman. I took the CHC appeal through the local stage and to NHS England, and still lost.

When things got really serious for my mum, I heard about companies that will prepare your case and represent you throughout the process, and using one of these was the biggest mistake I made. I was told by one of their advisers that my mum had a very a strong case and I employed Compass to handle the application. They were absolutely useless and all I got for my £5000 was a report, albeit very detailed, which was not available at the time of the decision support tool meeting but was only sent on the day of the CHC Panel meeting. The person who I spent an additional £1000 to represent me at the virtual meeting spoke TWICE. Please don't anyone let themselves be conned into using one of these companies.

My mother in law also got turned down for chc funding earlier this year. She had very severe dementia and a range of physical problems. She spent seven weeks in Lewisham hospital at the end of last year before finally being discharged into a nursing home. For six of these weeks we were trying to make Bromley social services thst she needed nursing care rather than an ordinary care home. She deteriorated dramatically during this time and we realised that the hospital staff weren't feeding her - they were typically leaving a wrapped sandwich on her table and a carton of juice out of reach. We had made it clear that she was very reluctant to eat and would only eat with a huge amount of encouragement, but they basically left her to starve. We were taking in food to feed her every day, but didn't realise the extent of the neglect until she had been in there for three or four weeks. When she was discharged to the nursing home, she was unable to even reposition herself in bed, had no idea where she was, and could barely speak. She had been fully incontinent for many months by then and it was obvious that she had a very short time left to live. Her funding was rejected as well.

I think it should be made clearer just how hard it is to get CHC funding rather than waste people's time and emotions letting them think there is a chance.

We got it for my mum who had copd, Crohn’s disease and some mental health issues. She has a knee replacement op that went wrong and made her fairly immobile and her care needs just escalated. Initially she had funding for 4 visits a day but this wasn’t enough and so we pushed for CHC and she got given a fully funded place at a complex needs nursing home (Norfolk). I had a complex relationship with my Mum (abusive history) and didn’t want to step in anymore than I had to, I had to be really clear that I wouldn’t provide any care at all. My Mum had her own mortgage free home but was given the funding regardless. (I often see posts here where people think they won’t get it if they have their own house). Later on she developed bowel cancer and passed away but this wasn’t apparent when she was given the funding.

This was what happened with us, my parent was violent and unpredictable. The nurse who carried out the DST said they were showing predictable behaviour because it was usually a certain time of day when parent started punching people, so basically it was your own fault when you got a black eye because you should have realised it was 5pm.

Yes but the fast track version as in the last few months of life. It was very quick and straightforward - had support from Macmillan with the form.

Well, that does appear to be it. They don't mind forking out if there is a death at the end of it, hence 'fast-track'. Sadly, with terminal cancer there is no way back really. But with those in my mother's condition with advanced Parkinson's, they can have a fairly happy existence and go on fine - naturally Surrey put her on a dehydration programme, the deal with the fast-track programme was that she would die. That motivated them to give the free funding - there was something in it for them!

We were not informed about that side of it. That's Surrey for you.

Just wanted to say I’ve been through something similar with a relative and totally get how confusing CHC funding can be. If anyone’s still navigating this, I found this simple calculator really helpful for figuring out if it’s worth applying: https://www.winstonsolicitors.co.uk/calculators/apply-current-and-future-nhs-funding – made things a bit clearer for us at least.

My DF has Huntingtons and was regularly throwing cutlery and smashing the windows of his high needs care home. The assessor said he was very likely to get funding, he was later refused. My impression is if you are marked high on behaviour needs, you are marked low on mobility (he could still hobble about and get off the bed after 10 minutes of struggling to get upright). Now his mobility needs are high he is not able to be get up and be physically aggressive anymore so he would score lower on behaviour and hit the same mark. It’s a catch 22 for most people with neurological progressive diseases and dementia. At no point will your needs combine to hit the required mark because they fluctuate. DF had no house of assets, but he is unfortunate enough to have a physical disease and should be funded by the actual NHS not the local council. Cradle to grave.

Hi @I8toysas others have said, it will depend on whether it is fast track or a full assessment. My mum was awarded funding via fast track last year , but as she’s still soldiering on, had a full assessment a few weeks ago. Despite her being bedridden with dementia and doubly incontinent, funding has now been withdrawn. If the NH are optimistic then I’d take that as a good sign, they would have more experience than us as individuals. If you follow the links that @checkedshirtshas put up you will get to the government guidance and the checklist they use - I would suggest going through that in advance of the meeting ( which I presume you will be attending) - do make sure the correct HCPs including someone that knows her are present. I found the process very intense, but despite mum’s issues, she didn’t score highly- although I do think the assessment was fair, it’s just that the bar is set so high. I’m trying to stay positive and think that at least we had the funding for a year! Good luck to you and your family xx

Thank you for taking the time to explain this. I think it might help a lot of people.
It doesn’t affect me now, but I really didn’t understand when they said my aunt, who was self funding, was getting some support from the NHS.

You could argue the behaviour domain, if it’s that severe that she needs 1:1 for example a priority mark in that domain is an automatic full fund. 2 marks in the severe column would also be an argument for a full fund. But it’s very difficult to get and as others have said it’s the four other criteria intensity, unpredictability etc that count not the scores. I’m a social worker for the CHC team in my LA.

Sadly it also depends on the nurse you get on the day, some are more sympathetic than others.

Yea my FIL who died last week, to be honest we don't know how he got it, we were just told he did. He had terminal cancer in the lungs, stomach, kidneys, liver, lymph nodes and brain. He was diagnosed last March and went downhill very quickly. Had a brain seizure the week after diagnosis, wasn't a candidate for treatment as too far advanced. So he was just eligible for everything he could have to be comfortable at home for as long as possible with carers etc, then died in a hospice after 2 weeks there. He never paid a penny for any of his care. I hope you can get the funding you need. Good luck.

An uncle of mine had it for geriatric mental illness. He was wildly unpredictable, non verbal with severe brain damage, communicated by hitting/punching/biting, inappropriate/risky sexualised behaviour, attacked several pregnant nurses while he was in hospital (he had a particular trigger around pregnancy, we don't know why), needed 24 hour supervision - 2:1 when awake, 1:1 when sleeping (but didn't reliably sleep, so needed a night sleeper who could be called to assist if he woke as well as his night awake). His care costs were enormous - £5-6000 per week to pay for the additional staffing. There was no issue with his CHC, though not long after it was awarded, he had a deterioration and was in a non-responsive state - the CHC was going to be removed as he no longer had complex care requirements, however he died before that happened.

Bluntly, they will accord it if they think your elderly parent hasn't got long to go.

We were offered the NHS fast-track continuing care pathway over 10 years ago when Mum was in Epsom Hospital, we didn't have to ask for it. On reflection it was a case of 'beware docs bearing gifts'. We weren't wholly unsuspicious, mind. From that moment on, oddly, it became really hard to get anyone to give Mum any drink - we had to do it ourselves, and it quickly became a silent, raging battle against the system, it took me ages to figure out why. This included when she was discharged to the lovely looking Barchester Reigate Beaumont care home, still under continuing care, and then later when she was at Priory Court care home in Epsom - and by then we'd been put back as self-funding; her condition wasn't wholly better exactly but I think the proviso was that the person had to have less than three months to live and she'd broken her promise!

Two years later she was worse off and we applied for it and got turned down; it's a lottery.

My father has severe Dementia and the nursing home that eventually accepted him applied for CHC funding five months after he was admitted.
Before that all sorts of professional bodies were involved with him and his care but it was the mental health team who reviewed him and prescribed strong anti psychotic drugs to regulate his anger, aggression and lashing out. A side affect of these drugs is overeating so he then put on a lot of weight and would become aggressive if he thought food was being withheld.
His skin also became an issue as his increased weight caused access sweating which resulted in some nasty rashes and broken skin.
The nursing home wanted him to go to a mental health unit as he was so bad but a cocktail of meds have kept him much calmer at the home.
The first funding was for three months and then a further review meant he was funded for another year. This is up for review again shortly.
The second review was really tough and I had to really fight his corner with the evidence the nursing home had amassed.
The bar to get it is so high that they’ll fight tooth and nail not to award it.
I’m not looking forward to the next review!

Yes we had this situation. So we had funding for 6 months then it was removed and then she died.

Excellent explanation

This is completely different. Fast track and CHC are different.

Fast track is for patients with a prognosis of up to 6 weeks here (some places a little longer). CHC is not based on prognosis but the nature, intensity, complexity and unpredictability of someone’s needs

Fair enough. Mum lived longer than 6 weeks - it was another three and a half years. We got the care funded for about 9 months of it, so we came out ahead.

My mother had it. It was originally awarded for 3 months and we were told that it would be reviewed after that. They never did because she died after 6 weeks (cancer).

DF got CHC. He has Lewy Body Dementia and Parkinson’s, is extremely unwell and very uncompliant. I sat in on the decision meeting with a social worker, NHS representative and head nurse at the care home. It took hours to go through each category for the NHS/SW to agree the recommended level of each one, and even then their recommendation had to be approved - and evidence is needed from the care home for everything, so there was a tonne of paperwork. I can’t remember all the categories, but DF was classed as ‘severe’ and whatever one down from that was in nearly all of them.

It is not intended for ‘Care’ my understanding is that it’s for people who require a high level of nursing, and who if they were not in a care home, would need to be in a hospital.

This thread is helpful, thank you OP. Our Dad got FNC on the first ICB assessment. I was there and didn’t expect CHC but made sure the nurse assessing saw the physical and mental health reasons for the move to a nursing home.

For the first review, I was told family weren’t needed there and don’t know the outcome yet - but I expect FNC to continue. Some recent changes in behaviour and demand on nurses time is definitely much closer to ‘unpredictable’ so maybe this means it could be worth me preparing for the next review.

My Mum sadly got CHC funding when she was dying from cancer.. in fact she was suddenly entitled to a lot of money like Attendance Allowance etc which she hadn’t had before. Unfortunately she never spent much of it as me and my sister did her care for her last 2-3 months and her cancer just progressed too quickly to need other care.