Appealing a decision on Continuing Healthcare

[minmooch]

My brother and I are appealing the decision that my father is not eligible for CHC. We have employed a company to fight his case.

Will update as it goes along if anyone is interested and to share our experience.

Not holding out any hope but think it's worth fighting for him and for others in the same situation.

In my area it seems to rely very heavily on unpredictability. I can see the logic. Even if you have considerable nursing needs, if it's all pretty stable, then it can be handled in a nursing home, and most people in a nursing home don't get CHC. But if you need constant balancing and tinkering with prescriptions, or frequent medical decisions and changes of plan, then you're going to need a higher level of nursing skill or heavy level of GP input.

The system is absolute crap. It's all very well for people to say "why shouldn't the elderly pay for their own care? Everyone else has to pay for their house and food" - but few people are paying £4000 a month for their basic needs. And for something that is purely random and that you can't realistically insure against (yes, there is insurance, but the insurance base isn't large enough for it to be affordable).

We appealed and won. It was hard, and you are made to feel very guilty, but we fought hard, and picked apart every little detail. They didn’t have a leg to stand on, it was obvious that it was needed, even though they tried to deny it.

It was all in the detail. Things they had accidentally said. Deadlines they hadn’t met, horrible horrible patronising social workers

My dad has Huntingdons disease and has been denied Continuing Healthcare once again. I’m appalled and am going to appeal. It’s horrendous, I sat in that meeting room with the assessor, his social worker and all his carers, they were apologising to me because they had to graphically state all the various indignities that now constitute his symptoms and that they didn’t want to upset me saying it (he is using bins as toilets for example), even a psychologist was present at one point to describe how difficult his condition is. The assessor then said to the care home manager, he is likely to receive funding, so yes, they do fucking lie through their teeth. Some of the answers on the form were severe/critical. I am not giving up, I will appeal and continue to fight for my Dads right to get the funding he is entitled to.

Sinister can I just clarify, did the assessor say he should get funding but then it was turned down by the CCG?

That's not the assessor lying it's the CCG being knobs and totally out of the assessors control. Definitely appeal if that's the case.

The assessor said it to the manager of the care home. She actually saw my Dad, that probably made a difference. I know it’s been mentioned not to record the meetings, but I think a lot of information given must have been ignored to come to their decision. It’s a complex needs care home and they are struggling with Dad, he is aggressive and has caused damage. When the home ask for help they are told to call the police, which is pointless. I think they are hoping he will be sectioned into psychiatric care and therefore the financial burden goes elsewhere. But again, sectioning is not an option, we did it before and the care was totally inappropriate for him. I feel like I’ve failed him to be honest. It’s such a horrible disease he should be funded without question.

After reading this I’m now concerned about the meeting I have on Friday. I ddad was awarded CC on a 5 ‘A’ s and a few ‘B’s by the hospital assessor. He’s now in a nursing care home and due his first outside of hospital assessment at the end of the week. He currently has a 1:1 carer as both the hospital and the home day he needs it and we certainly agree with that decision. What I thought was going to be a straight forward meeting now appears as if it will be anything but. CC asked for a second opinion of the home before they awarded it the first time and the home are also insistent that the 1:1 is essential, and due to this my dad has become calmer (dementia advanced hideously after he caught shingles following a stroke). I now worry that the positive help of the 1:1 will be his downfall......

We fought to get it for my dad who we were nursing at home with no support at all. He got it awarded on the Monday before he died on the weds morning. The sole support we had through 2 years of nursing him at home was one night of a waking carer to watch him and wake us if he needed anything. So not even any nursing or care input !

Oh and my poor mum was so exhausted she tripped up rushing to the chemists and was black and blue from top to toe which finally galvanised them into approving it so then we were nursing her as well as my dad ! Shocking lack of support all round. God help those who have no one to look after them when they are at their most vulnerable.

I'm following this thread with interest as a nurse who has been involved in this process in varying capacities. There are quite a few misconceptions on this thread, however I just was to assure anyone reading that this statement is simply NOT true..

It seems very often that they make a decision for eligibility on diagnosis. So if you have a diagnosis of dementia then you are unlikely to be awarded CHC

I successfully got chc last year, I'm told it varies depending on your ccg and also your assessor. The primary condition must be severe enough that they need carers for what's deemed medical reasons. The fact we needed to supervise 24/7 and she was an escape artist plus doubly incontinent, other medical conditions and she lived with her 90 year old husband. Getting payment for him isn't possible because the only reason he needs care is that he's now lonely and 91, he's struggling but no more than most people of his age. Not sure that helps but it seems it's about proving that their need is significantly more than a typical person of their age

My dad died of pulmonary fibrosis. He was bed bound, doubly incontinent , his hands were so rheumatic he couldn't hold anything so had to be fed. He was on high levels of oxygen and could do nothing for him self. We were nursing him day and night and still it took my mum's fall and a threat to start legal proceedings to get them to approve it and as mentioned we got one night of a waking carer before he died. The problem is that my mum didn't have the time, energy or knowhow to navigate the system without our input. She was just taken up doing what she could for my dad with mine and my brothers support.the system is very hard to deal with effectively especially when you are already physically and emotionally spent by the care you are giving and watching your loved one deteriorate.

I now worry that the positive help of the 1:1 will be his downfall It shouldn't be. "A need that is met is still a need". Make sure you mention his requirement for a 1-1 carer in every response, ie he's only managing this with the aid of a 1-1 carer. And if someone else in the meeting says "he copes with this OK", ask them "he has a 1-1 carer - how would he cope without that?" ... don't lead them, but make sure that his need for a 1-1 carer stays in people's minds.

But remember the decision is made on medical need not care need, so in effect it's whether he needs a medical professional on hand to make decisions.

Not at this point yet but have already learnt the importance of recording and confirming in writing every interaction with social care, mental health team, Drs, carers etc
Thankfully it's a habit I have got into from my job and I've just carried over to mums care. It's wearing and sometimes I just find the whole process so unfathomable I do wonder how most people cope - then I realised they don't and they get shat on by an under-resources overworked system that's not really fit for the purpose or definition of 'care'

I'm waiting to hear about our appeal, we sent it in September, they acknowledged receipt, nothing since then. I was told that they had three months to respond? In which case they're cutting it very fine, especially given the time of year.

We have fought very hard to get CHC for my mum and were in the process of consulting a solicitor for advice when we heard that it had been awarded retrospectively. It has been a long and difficult battle with endless phone calls and chasing up and a complete lack of interest from the panel side in doing anything. The only thing I can advise is don’t take no for an answer - keep pushing.

Quote “managed needs are still needs” at them on a regular basis. Also make a note of the deadlines which they are supposed to respond by, our board failed to meet these several times and that can work in your favour.

I feel blessed reading these posts.
FlL went to hospital following a fall and was diagnosed as having dysphagia and onset of dementia. He was given a stand by bed which became a permanent placement and the NHS paid for all his care for just over two years. Every 6 months he has an assessment on his dysphagia and nothing changed. We were told he only qualified because he came from hospital with a medical need ie the dysphagia and not the dementia.We kept expecting a bill but it never came.