Has anyone successfully applied for continuous healthcare when it wasn’t a palliative care situation

[HermioneWeasley]

We are applying for my Dad. On paper he meets the requirements of x number of most sever category etc but everyone has told us it’s basically only given in palliative care situations.

has anyone applied successfully when it was a long term complex and severe care situation?

would you mind telling me more about the situation and how you described the care needs?

thanks

Thanks @Ineffable23 thats helpful.

i don’t think he’ll qualify but we’ve got nothing to lose by trying.

We found the process brutal and it wasn’t awarded. DM was paraplegic but with weakness in arms. She also had a lung condition similar to COPD and slept in a CPAP machine, and was prone to periods of dementia-type behaviour when the CPAP wasn’t enough. She also had a brain injury so whilst she had capacity, she struggled to make sensible decisions. She needed specialist bowel management. She had (understandable) depression. Basically super complex. In the last five years of her life she had an emergency hospital admission every 6-9m where she ended up in intensive care or high dependency. Apparently that wasn’t enough. The process was distressing and it upset DM to have all of her disabilities and challenges listed and then coldly dismissed as being not that bad. Think carefully if it is worth it.

I know two people who get it. One gets it paid for an hour or two a day as has TPN connected. The other has a severe neurological conditions causing a type of dementia, lives in their own home and has one to one carers. It is very hard to get.

My father has CHC funding. The process was started when he was discharged from hospital to a nursing home. I was his representative as he is suffering amongst other things from vascular dementia so not able to sit through the 4.5 hours it took for the assessment. The CHC assessor had a copy of his discharge summary from the hospital, a report from the GP who looks after the nursing home residents and the senior nurse from the home was present at the meeting. My father met the criteria in enough of the categories to get CHC agreed and we will have to do it all over again next year as it only lasts for 12 months. The assessment was exhausting but I found the assessor to be a very kind person who carefully explained her thought process and allowed me to ask questions or give input where necessary.

Op, my MIL is in a nursing home and her list of issues is almost identical other than the stroke/tia..

They assessed with DH present, so he saw exactly why they refused... and said their criteria were so severe and so strict that his mum - bedbound, immobile with vascular dementia, alzheimers, diabetes, skin breakdown, copd, heart failure, crohns, doubly incontinent, no hearing, partially sighted, unable to move herself up the bed, does not know who she is , where she is, or recognise others, does not qualify for CHC- She does get the nhs funded nursing care which pays a good chunk.

Thanks to all of your sharing your experiences, it really is helpful.

@NeonRiver my dad won’t have any idea it’s going on. My mum has initiated it, but it will be hardest on her. She’s realistic about the outcome but worried sick about money so it’s her decision to apply

Food - have you got significant unintended weight loss? Otherwise sounds like it would be moderate to me. I had to have a big argument about this because they argued because his weight had stabilised at a BMI of 14 it was no longer high. They did give in in the end.

Yes, we had difficulty proving this one too.

The nursing home wanted to give a positive, difficult for them otherwise, as if they say ‘isnt eating’ or has lost significant weight, it reflects on their care.
DMiL’s food intake was described as being ok, that she was eating and no significant loss. She weighed 6stone. Everyone felt this was a healthy weight, failing to take into account that she had been a size 18, healthy, fit adult.

Yes, I left the dealings with the care home to my grandmother and in retrospect I think things were being minimised by the care home.

Not the weight thing as to be fair, the home were very worried about how low his weight was and he had lost maybe 3+ stone while he was in here.

He dislocated a staff members finger but it wasn't recorded in detail and I'm not sure there were sufficient records of his challenges when they finally decided to do a full review. It's something I would give greater consideration to if I have to deal with this again.

I almost feel guilty posting this because I know it will either annoy a lot of people or they’ll think I’m making it up but we got it very easily for my Mum in 2019, no battle whatsoever and I hardly had to do anything (and as an only child and her with no other relatives / spouse etc it was mainly just me and her). Basically she had Crohn’s disease and bowel cancer - cancer wasn’t terminal at the point she got full CHC funding- and some mental health issues, severe depression etc and copd. She has been battling on at home (alone, home owned outright) and her needs were getting worse and she was in and out of hospital. I lived 10 mins away and have my own disabilities and a disabled son so was limited in the amount of care I could provide myself. She had a nurse (?) social worker type person involved in her discharge from hospital and I said to them I couldn’t provide care and what was the plan, initially she got 4 visits a day but then that wasn’t working either so I complained and within a couple of weeks she was given full CHC funding and was offered either a fully funded live in carer or a place at nursing home (she chose the nursing home). She lived there for some time until she eventually passed away. (No self funding at all).

I have no idea why we seemed to get it so easily and others don’t, no idea if it’s an area thing - we are in South Norfolk. I read threads / posts on here where people have had either just a no or only if it’s terminal etc etc but that wasn’t my experience at all.

I work in/with schools. We have similar things going on.

As school teachers we/they want to show and prove that we have done all we can to help a child with SEND, yet if we do there is no funding or other support.
Sadly, the way to get support for the child is to play down the success of what the child has achieved. Very difficult for parents. Very difficult as professionals in playing through the very best for a child.

I suppose I recognised the dilemma.

I also recognise the ‘LA pot’ is finite, having to watch parents of SEND children having to prove how many needs their child has, to be eligible for funding.
LA’s have so little money ( Conservative budget cuts to LA’s were so severe and now very few want taxes to rise) but LA’s can't possibly meet everyone’s needs.

Have a look at a group on Facebook called Safeguarding Futures. The people running that are very knowledgeable and helpful with all things related to care, funding, wills, etc.

If you or the relevant elderly person has house insurance that gives legal cover check that out. Our solicitor said we should legally challenge this for MIL ... we had too much on and couldn't face it at the time. I realise now tgat we should have challenged it.

M has it. Tbh I stayed well out of the way and the nursing home and MH team dealt with the whole thing. They had scrupulous records, and evidence around why Ms care was severe enough to warrant funding. Most of what you describe is likely to come under social care or funded nursing care, in my experience.

I went to two appeals for mil.

I do think - as in the case of pp - there is a postcode lottery, in fact I know that if is true as I investigated the statistics. Mil’s health authority rarely awards funding.

Mil had innumerable conditions plus she was violent and a screamer. It was argued that with drugs she could be subdued and therefore able to be cared for. So knocking all patients over the head (chemically) miraculously made any possibility of funding disappear.

My advice is to ask for a funding appraisal immediately someone needs care. We only discovered the possibility after the fact, by which time we realised that the nursing home’s notes were very patchy and that homes do not want funded patients so play down any needs.

I couldn’t have tried any harder and my evidence and understanding of the rules pertaining to mil was exact. However it was clear that the final appeal panel was always going to say No.