NHS Continuing Healthcare

[poisonedbypen]

Thanks to all who offered advice on my other thread. Due to further health issues my father is still in hospital although we will be looking at nursing homes again soon.
Has anyone successfully got full funding under the Continuing Healthcare (I think that is the correct term)? No-one ever mentions it, just "Will your father be self funding?" but after reading around this I believe he should be eligible although I know the bar is set very high.
I would be interested in peoples success stories or otherwise. Thanks in advance.

[thesandwich]

Worth asking age U.K. For advice? There was an article in the times recently- sorry can't link. Good luck.

[IAmTheWhoreOfBabylon]

Does he have specialist needs over and above normal nursing that needs specific training
That's how it's allocated in my area

[poisonedbypen]

Thank you both. Yes, I saw the article in the Times. I'm not sure whether his nursing needs specialist training or just regular nursing, but that's a useful distinction. I have also found a forum about it, so am delving into there.

[CareToBeDifferent]

I successful secured Continuing Healthcare for my parents and have helped many others do the same. It can be a tortuous process and it's vital to read up on the guidelines as possible, and as much about the potential pitfalls as possible. Most families are asked about money first - and it's completely the wrong way round. Anyone asking that question is ignoring the Care Act, which makes it clear that people should be referred for Continuing Healthcare assessment as a priority, before any means testing. Indeed, if a local authority (social worker/hospital discharge team, etc) carries our a means test, it is effectively agreeing that the person needing care is a local authority responsibility - and yet the person needing care may have care needs that are beyond the local authority's legal remit. It means the local authority is acting illegally. Continuing Healthcare must come first. Refuse to answer any questions about money, and insist that a 'Checklist assessment for NHS Continuing Healthcare' is carried out before your father is discharged from hospital. That must happen. Read up on that - because you should be involved and allowed to input too. If your father gets through the Checklist (stage 1), there should be a full multidisciplinary team assessment to decide whether funding will be recommended. Your father should still not be asked anything about his money - nor should he pay anything - until that whole process is complete. It doesn't matter how much money he does or doesn't have, nor whether or not he has a house, Continuing Healthcare is not means tested. Hope that helps.

[FruitCider]

Have the ward your father is staying on completed a CM7 and CHC form? If not, request that they do one promptly as they are the applications for funded care.

[NewspaperTaxis]

It's true, Cont Healthcare is not means tested.

My mother was put on this by the hospital, very nice of them too it was. We didn't even have to press for it.

Looking back, I now suspect they in doing so they had my mother on the Liverpool Pathway, that is a process of death thru dehydration. On the ward, I was the one who had to get her gradually drinking again, by three times a day visits, after the care home had nearly killed her thru neglect. This continued, even when I had fluid charts up on the hospital wall saying I'd got a litre of drink down her a day. No one assisted or offered to take over or took any interest. This carried on at her posh new care home, run by Barchester, where she was on Continuing Healthcare. I had to come in every other day to give her drink. When we kicked up a fuss, they started up a campaign of harassment against us, which it later turned out had been endorsed secretly by the Council and local NHS Clinical Commissioning Group. It means that carers and nurses spy on you and makes notes, raise spurious safeguarding concerns against you, and so on. Then try to have you barred for 'abuse' so they can finish the job unimpaired, I suspect.

In other words, Continuing Care may be a misnomer, a bit of NHS doublespeak. They won't pay out if it will be continuing for very much longer. That may work for someone with terminal cancer, but for someone with dementia or advanced Parkinson's, well, it may well be their thinking is, right, we're going to kill this one but we'll offer the rellies a sweetener so they feel alright about it. They won't know that ma or pa didn't get enough to drink.

Obviously we did know, and that made us dangerous.

The Liv Pathway still exists in effect. They just don't call it that. They don't call it anything, if it doesn't have a name it's harder to get a handle on.

So it's a case of be careful what you wish for, and whether you get Cont Care most likely depends on how much money the local CCG has.

[poisonedbypen]

Thanks again all. I think he has got through the checklist & I have a DST meeting tomorrow. Reading up on it tonight but it's all so secretive.

[SecretSpy]

It's not secretive as such, but some of the qualifying criteria are subject to interpretation and some assessors are from various backgrounds.

I've seen that people who qualify generally have unpredictable, varying needs or need a lot of specifically nursing input rather than general care that a care assistant can provide. Or a poor prognosis that means that the process can be 'fast tracked'

[SecretSpy]

Eg needing someone to feed them wouldn't usually count, needing to be fed a modified texture diet with close supervision because of a significant risk of aspiration may well.

Needing regular continence care wouldn't usually count, but needing frequent unpredictable catheter changes because of frequent blockages may. Having epilepsy wouldn't routinely qualify, being poorly controlled and needing frequent emergency medication to stop the seizure might.

However IME once the criteria are met, they don't tend to take people back off it later on.

CHC funding is entirely separate to the Liverpool care pathway and has nothing to do with it btw.

[MrsMKJ]

Hi there. Hopefully the DST (decision support tool) will be completed by a multidisciplinary team, with your input? Have you looked at a DST template? You should be able to find one online. Read through before hand and have a think about where you see his needs. The form itself outlines the criteria so is useful to read over. Secret is quite right that there is a section at the back regarding unpredictability and intensity of needs... if he meets some of this criteria it will help. Good luck with the meeting. You can always request a reassessment if tomorrow doesn't go well.

[hatgirl]

If a checklist is completed and screens your relative out of being considered further for CHC you as a relative can still ask for it to go to a full 'DST' anyway. You often have more power than the SW in that respect.

I find that the checklist can often be 'misinterpreted' by rushed hospital staff who don't know the person that well and it's always worth asking to see a copy or asking the SW to check they agree with how it has been scored.

CareToBeDifferent I get your email updates and find them interesting. As a SW though we are often stuck between a rock and a hard place of needing to be upfront with families about the fact that they may be financially assessed for care. I usually have a general discussion with them about CHC/checklist/DST and what the local authority financial implications will be if they aren't eligible for CHC, all at the same time. I'm sorry if you think that is wrong but you have to remember we are often working in extremely time sensitive situations and it isn't fair on families to not give them transparent information about possible financial charging up front.

NewspaperTaxis CHC has absolutely nothing to do with the Liverpool care pathway. It would also be great if all these different agencies did actually communicate effectively enough with each other in a way that would make the level of organised conspiracy you seem to feel there is against you possible, but in my experience that is highly unlikely!

If you feel everyone is acting in a way that suggests they think you are causing a problem it may be worth exploring with them why they are finding your point of view so difficult to comprehend and seeing if you can get them to come to a better understanding of your concerns and viewpoint?

[NewspaperTaxis]

It is quite true that CHC has nothing to do with the Liverpool care pathway. The Liverpool care pathway does not officially exist now.

However, CHC will come courtesy of the local NHS Clinical Commissioning Group, right?

And the NHS stand to profit from those fast-tracked to the morgue, correct? They cannot be paying out for those with dementia, who require full nursing care, who might linger on for another decade. And this can undoubtedly happen, as there is no actual reason why anyone with dementia should die, unless they have some other condition that's terminal or fatal, like a dodgy ticker or the Big C.

Any 'conspiracy' does not have to be particularly well organised. It's not like any of them are actually accountable, is it? I mean, Southern Health's Katrina Percy got lined up for a newly created lucrative new job, presumably because they like her personality so much and not at all because she might go on to spill the beans. I mean, over a thousand deaths not investigated? You'll struggle to tell me that's incompetence when they profit from it. Over a thousand uninvestigated deaths! That's one hell of an oversight.

But correct, I have no memo that specifically states that CHC cases get put on the Liverpool Pathway, or whatever it is called now. But an FoI might be interesting to see just how long patients with dementia last when on Continuing Care in the OP's area. That would prove interesting.

[whataboutbob]

There is a fast track CHC pathway if you are thought to have a prognosis of 3 months or less. Hence there might often be an overlap between palliative care and being awarded continuing health care. Working in a hospital i have also seen quite a few patients with much longer expected lifespans be awarded CHC, especially if challenging behaviour is in the picture.

[whataboutbob]

I hope the meeting went well Poisoned, and that the DST has triggered a full assessment. Post again if you have any further questions, I have been through the process with my Dad.

[poisonedbypen]

Thank you all. It went well and will go forward to the (?) CCG next week. Apparently they might come back and say "yes", "no" or "could we have some more evidence of x". I'm not clear whether we can choose a nursing home if they fund it, or if the NHS get to decide. They are very expensive round here!

[thesandwich]

Good luck - glad you felt it went well

[FruitCider]

NewspaperTaxis my management placement was in dementia care. No bumping off of patients with CHC funding there I can assure you!

[SecretSpy]

Newspaper, it would not be in the least surprising if many people did not live for a long time with dementia who qualify for CHC.

Because dementia is a progressive terminal illness, and CHC patients are more likely to be in the end stages of the disease.

[whataboutbob]

Poison if the CCG awards CHC they will probably get to choose the care home/ award a budget, that's the impression I gained anyway when my Dad went through the process. They will also argue, probably with some justification that they are choosing a care home that can meet the needs identified in the CHC assessment.

[poisonedbypen]

I do agree that if they are paying they should have a say in where he goes, I just hope it's nowhere awful. I'll update when we have an answer. The meeting is next Wednesday. The ward & discharge team were very good & talked through each section with me, making sure I agreed with their assessment on each section before moving on.

[whataboutbob]

That's good poison, it sounds like they are following the procedure correctly. I got a lot of good info from CaretoBe's website and even though it was tough and required me to argue a good case for Dad at the second meeting (I think it's the DST meeting) I did manage to secure chc for Dad. Feel free to pm me if you want more info.

[NewspaperTaxis]

Ah, now whataboutbob's comment about the fast track CHC rang a bell. That certainly happened with my mother in hospital, and later in the year I was informed by the care home doctor over the phone that when she'd arrived they'd given her three months to live. We were never told that of course, until then, which was some five-six months later.

Thing is, it would have been true. It was only because the family was taking it in turns to visit every other day to give her drink, and had the time to, that she survived imo. So it was a self-fulfilled prophecy, or would have been had they had their way. That was 2 and a half years ago, my mother is still going. She was taken off CHC after about eight months however, on officially rather spurious grounds ( a dodgily worked out BMI), though I could not deny she had got better in most ways.

I have to say this: both in the hospital, I was the one who had to get her drinking and eating again; none of the staff did anything, even when they saw I was getting a litre down her, and had fluid charts proclaiming that up on the wall. It was like that after she got CHC. And it continued at the care home really, only the environment was better.

Re choosing a care home, they do it for you but you have right of veto, so long as the grounds aren't too spurious. You don't just pick a care home and say, 'want that one'. The one we went to looked great, but it was the third one offered, and it was clear that they wanted the hospital bed back, which was fine by me under the circs.

I agree that of course, anyone put on CHC is likely not long for this world anyway, which can make it something of a poisoned chalice, depending on the circs, and any FoI would need to be examined with that in mind. Social Services got very heavily involved with us, in fact initiated a smear campaign on the quiet, with the care home behind it (and no, I am not kidding) and because of their insistence on being involved in her every care home move since, it has made me wonder what is on my mother's medical notes and whether CHC = LP.

But I can't see them... I don't have PoA in Health and Welfare.

[NewspaperTaxis]

Oh, and I should add that my mother was not officially on palliative care, that was never run past us.

[LetitiaCropleysCookbook]

I don't want to hijack the thread, but is it ever possible to get CHC for a relative that you are caring for at home? My dm is in the process of being assessed, and has got through the checklist, but I don't hold out much hope, going by the anecdotal information about how high the bar is set.

[poisonedbypen]

My understanding is that if she's got through the checklist you are in with a hope. You have nothing to lose anyway.