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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

So from your description:

Breathing - does he get recurrent chest infections/need an inhaler/have shortness of breath? Probably no needs if none of the above.

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.

Continence - probably moderate I think from your description.

Skin - anywhere from moderate to severe. I'd focus on this because it may be key to getting finding.

Mobility - I would guess high but this is another where severe is an option so see what you think.

Communication - I would guess high from your description? There's no severe option here.

Psychological and emotional needs - this was another one where I ended up having to have a fight. He has become less able to vocalise so their assumption was that that meant he was less distressed. I thought it meant he just wasn't even able to scream any longer. Not sure on this from your description.

Cognition - I think this one sounds like it should come out as high or severe. Severe is probably what you need to push for to have some chance of CHC funding.

Behaviour - this is where we originally got the second severe that compelled CHC funding and as he became less mobile the risk level came down. Make sure you flag areas where there may be a risk to others if they exist.

Drug therapies - this is going to depend how brittle his diabetes is and how challenging it is to manage. Is he type 1 or type 2? Does he need injections if insulin etc.

ASC - none that you've flagged I don't think?

Other needs - we accepted this as none and it was then flagged as evidence for why he didn't need CHC later so worth considering if there's anything extra you might find it helpful to bring in here.

Most of that is standard nursing and won't meet the complex/unpredictable/intense criteria.

The pressure areas not responding to treatment may score highly but it will depend how problematic they are to manage, how long they have been there for and what specialist support they are requiring. Are tissue viability nurses frequently having to review or is there a specialist dressing regime?

Similar with the diabetes. It's not the diabetes itself that will score its how unstable the diabetes is and how often a nurse or medical professional is required to be involved to manage the diabetes (e.g. several times a day or daily).

The risk of something happening is not the same as something actually happening and requiring regular nursing support. Risk of UTIs doesn't score the same as frequent utis/ problematic catheter care or requiring regular bladder washout. From your description his continence care is probably a score of moderate.

He will probably score a high rather than a severe on cognition. However even a severe in cognition won't necessarily indicate a primary health need if there aren't any other significant scores in severe/priority domains elsewhere.

No harm in asking for a checklist to completed though. Is he already eligible and in receipt of FNC?

We did for a short period due to unpredictable violent behaviour that caused the placement to break down. It was removed when the behaviour stabilised and Mum became more unwell and less mobile. But that was a few years ago. I think the domains that are most salient are breathing (eg tracheostomy) and behaviour (unpredictable violence).

My cousin got it for his mother with dementia, because he worked for a firm of solicitors in that field.

I got it successfully for DD1 in her 20s with a severe life threatening condition, but nowhere near palliative care. She got a Priority and several Severes.

Generally, she’s looked after by care workers, but she needs an onsite medical centre as and when required - she needs to be checked over by a nurse from time to time. Sometimes, they decide to send her to A & E.

I know other young people, with the same condition as her, with NHS CHC funding.

I’ve been through it with my stepfather. It was brutal! Basically, they can have a really high level of need but if those needs can be met without complex nursing care then they don’t meet the criteria. He was non verbal, doubly incontinent, violent, bed ridden, bed sores, lots of different meds etc. He had a DOLs in place. But all his needs could be met by Health care assistants. I couldn’t believe that he was being held legally against his will and had the insult of having to pay for the pleasure.

Who is currently funding should play no part in the decision and the decisions are always audited higher up to make sure that assessors haven't awarded through sympathy. As harsh as that sounds it's because its a pot of NHS money to fully fund the care of only those with needs so complex the NHS has a lawful duty to fund all their care.

Many of the people who aren't eligible for CHC are still eligible for FNC (funded nursing contribution) where the NHS pays towards their nursing costs e.g. in a nursing home. Because this is paid directly to the care home though and doesn't cover anywhere near all of the total care home fees it tends to get a bit forgotten about.

Yes my dad has it. He has very complex needs across many domains (breathing, mobility, dementia, communication, continence, etc) but is not end of life. It has been very difficult to find nursing care for him due to this. We didn’t use a company to support but I helped DM navigate the process. From what I’ve heard I think the assessors were very fair in this case.

I did, moderate to severe Alzheimer’s but not technically terminal. The fact that they had savings under the threshold for contributing to social care I think helped but the assessor was lovely, he was a paramedic by training but did assessing 2 days a week. He realised the situation (the main carer was in bad health and couldn’t cope) social services were finding 4 visits a day and the family were funding overtime sleep in because she kept escaping. They took over funding the daytime from social services and overnight from the family with me managing the budget then when she broke her hip they facilitated the move to a care home on release from the hospital. She lived 2 more years