NHS Continuing Healthcare

Oh pen, good news about the funding- but you must feel it's somewhat outside your control. Good luck and keep fighting- have a and

We have chc for DF which he first received for care at home. The district nurse did the assessment and was lovely. The GP knew nothing about CHC .

He's now in a care home and rapidly deteriorating as they don't check he is eating/drinking. It's a fucking joke .

Apologies for swearing. Makes me mad.

Thank you so much - that really helps! A lot of that is really important - some of the local nursing homes are very much focussed on Alzheimers' and the treatment, while great for elderly patients who can remember the past, would be a disaster for Dad (who can only remember snippets of the past and present, so gets frustrated at memory activities like looking at photo albums, and who would really, really hate a lot of the nostalgia stuff - which may make him even more isolated).

I'll reward myself with wine for completing it I think...

Don't worry about using the jargon or anything exhausted it's your opportunity to express your wishes or what you know of your relatives wishes.

So that could be something like

You agree that he needs 24 hours nursing and you feel that X or Y setting would be good for them because...

Or it could be something like they have lots of family in x area and it's very important to you that he remains in that area so you can all continue to visit /support them. Eg the close relatives can't drive so they need the setting to be accessible (making frequent visiting easy is something I've seen really helps families keep in close contact)

You know they would really hate a care placement with xyz so you'd request that they look at options...

It's your chance to express preferences etc basically. I'd feel free to add an attached sheet of paper if you need more space. Tell them what you need to tell them.

I would think that they are trying to follow good practice, so they are not just assessing whether the NHS should fund his care, but also want to make sure his needs are best met. When is the DST meeting? It's important hat you are there especially as you feel he score sa severe in most areas, it's not unknown for CCGs to "bargain down" domains. They certainly tried to at my Dad's meeting.

Hi everyone, sorry to hijack the thread which I've been following with interest, as my father is being assessed for CHC.
Having seen caretobedifferent's excellent website and looked at the CHC checklist, he would register as "severe" for everything except pressure sores (confirmed by the backup documentation on his DOLS assessment).

I was quite surprised to receive a letter asking me as his nearest relative to give my own recommendations on his future care as part of the CHC and I have no idea what I ought to include - there's no guidance with the paperwork and there's not a lot of space either! Has anyone had experience with the 'carer's views on future care'? Dad is being treated as a patient with severe/advanced dementia which probably isn't correct but puts him in the right bracket as to his mental state at the moment.

Okay, sorry, I've been following different threads and missed that.

Obviously I have a more cynical attitude than some on this thread, but there may be a chance that if you are doing your best for them at home, they may be less chuffed about granting CHC, because frankly, you might keep them going for ages and it will cost them. As you yourself would agree, that would be unlikely to be the case in a care home; where relatives might not have to bother buying Christmas presents.

*health and welfare

I have a POA in care and welfare. I'm not sure how you understood that I was considering a Care Home for her! I've had her at my home for nearly 4 (difficult) years because I don't want her in a Care Home (dreadful places for those with complex needs)!

What I'm hoping is that if she qualifies for CHC, it will be paying for her carers at home (with me), hence my original post, as I imagine it is less usual for CHC to be given to those still in their own, or a relative's home.

Oh, and if you don't have PoA in welfare, you won't even be allowed to look at her medical notes.

Well, you may be in a different situ, though I'd add that if that was your experience of respite, I don't know why you'd think a care home permanently would be different long-term. Don't be surprised if you wind up with a) Your rellie in a care home, no argument but b) No CHC, esp as word is out they're cutting back on the latter. It does depend on your local NHS CCG.

I can only once again advise: get PoA in Health and Welfare if there is any chance, otherwise she could be in a care home, you could have grave concerns about her welfare yet be actively forbidden by the law to get her back to the family home to save her life, only finding that the care home colludes with Social Services to have you barred from the home after raising legit concerns. I am no saying that will happen. I am saying it can happen - you will have no legal say in it. You can argue about if after she's gone; take a ticket and stand in line.

Thanks, Newspaper. Actually I've already been looking after Mum at home for nearly 4 years. She came to live with us after breaking her hip. She's never been in a care home for longer than a fortnight's respite, which is always a disaster, as they unravel all my painstaking efforts (last time at a cost of £1400 per week, at the only home which had a vacancy coinciding with our holiday!)

I'm her main carer, and she (I act on her behalf) employs private carers for a few hours each weekday, who are v good, and flexible, and make her being at home possible. However, she didn't have any property, only savings (above threshold atm.), which are dwindling with cost of carers, of course. And I have no doubt that at the end of her savings, if it's the local authority stepping in, the most that will be offered is a 4 (half-hour?) visit care package, with me doing the rest, which would drive me into the ground!

I was pleasantly surprised that she got through the checklist, but feel I'll have a real fight to get further. Why is elderly care such a struggle?........(Rhetorical question!)

I'm not an authority on this, and it would depend on the NHS Clinical Commissioning Group approving it, but from what I recall it would be possible to have it at home, yes.

Incidentally, however, if Social Services kindly suggest to you that you might like to care for your relative at home, rather than the care home they are at, you should take caution. We got offered that twice, and the first time we fell for it, made all the plans etc grateful to take the opportunity while it was on the table. Turned out it was a ruse - they do this because it makes it easier to obtain a court order stopping you from moving your relative. They can do that if they can insinuate that (or just lie) and say they suspect you want to move your aged relative back home, making out you might abscond with them. They can't do that so easily if you are simply asking to move your relative from one failing care home to another, as they don't have that excuse.

So don't be surprised if you have a meeting with the local Safeguarding team and they suggest you move your rellie back home. We got that a second time, even when we obviously were looking to only move our mother to another care home. When we looked at the minutes of the meeting, we found that, again, we falsely quoted as claiming to want our mother back home when we had never asked for any such thing. There were other little lies too, suggesting our mother was in a very frail state, all aimed at building an argument stopping us from moving her to another care home.

I do suspect that the way CHC is run in care homes, there is a good chance they won't have to pay out for very long. However, cared for at home, with loving relatives keeping an eye on the situation, and they could well be out of pocket.

Less cynically, home care does not have a great reputation anyway, as you hear of visits lasting only 10-15 minutes, so care at home may not be practical.

Thanks, bob. Will have a look.

Laeticia my Dad had CHC at home for about 1 year. It is not dependent on your place of residence it is dependent on health needs. The money went to pay for all day carers. There's plenty of good info on Care to be Different's website. Disclaimer: I am not affiliated to C to B. D. I just think they offer v good advice and info.

Well, fingers crossed, and for you, too. I really had to argue the case for some of the categories.

If you go for it, will you have any input or is it done without your involvement, as your father is in hospital and may go to a nursing home? I only ask because if you do have an input, it is definitely worthwhile printing off a copy of the checklist and going through it category by category, to prepare your arguments beforehand.

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.

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

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.

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.

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.

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.