Hi Dave - thanks for your reply and good luck. Have you heard the appeal results? (sorry if you have said) And is there any chance that you wold be willing to share your appeal doc with me? - or know of any others that you could point me in the direction of? would be hugely useful as I've now done lots of reading / pulled lots of thoughts together and now working out how to best structure it! There is useful info on Care to be Different but their example appeal for the 4 indicators doesn't seem to totally tally with their advice - or with the info on the indicators.......which makes me think I'm stupid not to have got help with this! If you can help let me know and I can share my email. Hugest thanks and good luck. Sarah
Hi Dave63. That's wonderful news indeed but, as you have pointed out, it's a great shame that so many sacrifices had to be made unnecessarily.Finally, after a two and a half year battle, some good news. Mum has had her ratification for full funding approved by the LRM. They have also confirmed that all her care home fee's will be refunded, with interest, back to April 2021.
We're absolutely delighted obviously, but can't help feeling disappointed that it's taken so long due to the appalling gatekeeper mentality of the ICB.
It's also a tragedy that whilst all this was going on she had to sell her bungalow, which was her pride and joy and the reward for a lifetime of hard work, to cover her care costs. She'll never get that back and it nearly destroyed her when she had to sell it.
Wonderful news. Well done. Diabolical it has taken so long though. Understand re the disappointment regarding the house sale, we are in the process of selling my mums place, while we continue the battle with the CHC funding.Finally, after a two and a half year battle, some good news. Mum has had her ratification for full funding approved by the LRM. They have also confirmed that all her care home fee's will be refunded, with interest, back to April 2021.
We're absolutely delighted obviously, but can't help feeling disappointed that it's taken so long due to the appalling gatekeeper mentality of the ICB.
It's also a tragedy that whilst all this was going on she had to sell her bungalow, which was her pride and joy and the reward for a lifetime of hard work, to cover her care costs. She'll never get that back and it nearly destroyed her when she had to sell it.
Hi @MarleysMumI’ve asked for advice here so just wanted to give an update.
Since I challenged in May for how the reassessment carried out in March was done, my Dad has been very poorly, even more so in the last 10 days. Last week the Nursing home chased the CHC re my Dads assessment and the meeting was booked for today. The CHC told me that he’d been flagged for a review but it had been missed.
I went there armed with a long list of questions and notes (thanks to the advice on here) but within the first five minutes the assessor told me she was authorising fast track. This was based on his nutrition ( he has severe dysphagia meaning often he can’t take anything orally and now has repeated chest infections) and how frail he is now.
The care home managers told me that they had agreed he should be fast tracked due to his recent deterioration. It will be reviewed in 12 weeks but she said if hes still with us, it’s virtually guaranteed it will be renewed as theres no way he’ll improve in that time. My sister in law is a manager in adult services and told me that in our area fast track is now only done if theres a life expectancy of 2-3 weeks. (Shes had no input so that’s not why it’s been approved).
So my feelings are very mixed. Finally he’s got what he deserves but only because he’s so very poorly. My dad has needed every aspect of his life and care managed for many months. He was classed end of life 6 months ago and prescribed anticipatory meds. Why do families that are already going through such upset have to continually fight for what’s right. I just pray for him to be at peace.
sorry for rambling on. My only advice is to keep fighting for what you know is right.
Thank you for your reply and the advice you have given on here. It certainly is and so unfair.Hi @MarleysMum
It's such a double edged sword isn't it. On the one hand it's a relief to finally get what's deserved and on the other it's appalling what families are put through in order to get it.
Well done for fighting for your dad.
Thanks for replying Dave63. I'll have to wait and see what my solicitors response will be. I expect they've come across it before. May even be the same legal firm as yourself. Or even the same ICB!Hi @luggy - Our solicitors had something similar prior to mums LRM. The following was included in their email to me.
Just to let you know, the ICB contacted me asking to arrange a clinical call with them. I queried this with them as this is not usual process and they have advised that it is to discuss the details of the appeal and to highlight the challenged domains. We have made this very clear in our initial appeal request letter and appeal form and I don’t feel there is any value in discussing this further until the ICB have obtained and reviewed the necessary records.
We tend to find that this is offered to families who do not have representation and this is purely used to explain the appeals process. I have therefore asked the ICB to obtain the records first but I have said that I am happy to discuss anything with them if they have any specific questions.
Because of a move to permanent residential care with many comorbidities I think the answer is 'yes' a CHC checklist should be done.If SW isn't thinking CHC should we ask her to?
I have never been asked to attend mum's assessmentsHi Ruth,
I always smell a rat when people seem to want to rush things through without following correct due process. My mum had her 3 month review in early December although in reality it was a 6 month review as it was 3 months late.
There was only myself , the assessor and a senior nurse from the home present. It was an “in person meeting” and the assessor got some time to see mum. To be honest I was expecting a difficult time since the original CHC decision was noted as being” marginal” which I felt might have been put in place to set us up for a fall at the 3 month review.
The senior nurse at the home confirmed that very little had changed since the full assessment and mum was confirmed as being eligible for CHC for another year by the assessor. Within 3 days I was sent a confirmation letter and a current written report over each of the domains , which detailed the original DST levels and comments and mums current needs and any recommendations to the nursing staff. I did notice however that the assessor marked mums behaviour back down to high from severe despite saying nothing had changed . There was even a contradiction saying that at the full assessment only the social worker gave a severe level , there was no mention of the dementia well being professional and unbelievably the notes also said the nursing home did not offer their opinion when presumably asked. It will not have gone unnoticed by the CCG that after the social workers severe marking for the behavior domain I was cut off of the teams meeting so as regards my presence and my tape recording cannot prove this is a deliberate lie or just incorrect. On rejoining the meeting I was told however that the general consensus of the panel was that mums behaviour level was severe and that is on tape. Best bit of all though is I have in writing on the original DST that other than the CHC assessor “ all other MDT panel members gave a severe level of need “. So alls well that ends well, I might not have it on tape but I’ve got it from the horses mouth in writing should I need that piece of evidence in the future.
Sorry if I have rambled on a bit about my mum’s 3 month review but it was only to show that you should be entitled to something in writing before being thrown into a rushed meeting. Study what you get and compare it the DST paperwork you got when your mum was successful at the full assessment as opposed to what they are saying at the 3 month stage.You might find a few things that compromise the soundness of the 3 month review, after all my mum got through the review but there were some glaring mistakes when summing up which makes me feel this might be the start of a process to get mum off of CHC in the not too distance future.
Regards rushing people, on mums first full assessment when she was still in hospital they gave me only a few days notice of an impending full assessment. I knew nothing of the CHC process back then and they knew it. Myself and mum had basically been setup to fail and they also knew that. I managed to get couple of weeks delay in order to accumulate evidence but it was nowhere near enough but at least it gave me some time to get a little familiar with the main points of the NF. On the day of the assessment none of the hospital nurses that had experience with mum were present , it was just myself , the assessor and a social worker that had never met mum. It didn’t smell right and indeed I later found per the NF it wasn’t right. I was even able to find out by a bit of stealth internet searching that the CCG assessor had only been in the job for a month.
After the rushed meeting I was told by the CCG that mum did not qualify for CHC which I was expecting and in reply they were told that I intended to declare the assessment null & void due to mispractice as per the National Framework which they were not expecting ! They did not try and defend their case and mum was subsequently given a 2nd full assessment that had to be abandoned for other reasons before finally getting CHC 3rd time lucky.
Whatever you do Ruth don’t be bullied, demand the paperwork, study it with a toothpick, tell them politely what you consider to be a reasonable time to prepare following receipt of that written confirmation. Learn as much about the NF as you possibly can and call them out at all times should you feel they might be in breach of it.
Wishing you the very best of luck !