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Elderly parents

NHS Continuing Healthcare

67 replies

poisonedbypen · 09/10/2016 20:53

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.

OP posts:
LetitiaCropleysCookbook · 13/10/2016 16:00

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.

whataboutbob · 13/10/2016 22:01

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.

LetitiaCropleysCookbook · 14/10/2016 01:01

Thanks, bob. Will have a look.

NewspaperTaxis · 14/10/2016 12:18

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.

LetitiaCropleysCookbook · 14/10/2016 14:53

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!)

NewspaperTaxis · 17/10/2016 12:27

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.

NewspaperTaxis · 17/10/2016 12:28

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

LetitiaCropleysCookbook · 17/10/2016 13:52

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.

LetitiaCropleysCookbook · 17/10/2016 14:45

*health and welfare

NewspaperTaxis · 18/10/2016 15:08

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.

permanentlyexhaustedpigeon · 20/10/2016 15:14

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.

whataboutbob · 20/10/2016 16:50

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.

SecretSpy · 21/10/2016 18:08

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.

permanentlyexhaustedpigeon · 21/10/2016 19:22

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...

SummerSazz · 21/10/2016 19:33

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 Confused.

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

Apologies for swearing. Makes me mad.

poisonedbypen · 26/10/2016 16:18

Just to update, my dad will receive CHC funding due to certain needs, which is great news. However they are struggling to find a nursing home that can take him due to how much care he needs. And they aren't looking in the area I asked them for, so I am worried that he will end up somewhere grotty miles away. I haven't actually had any official confirmation yet so don't know who to talk to (I'm working on it!), it was just a chance conversation with the ward sister who said that 4 homes had rejected him (one visited him). I suppose this is how bed blocking happens...

OP posts:
thesandwich · 26/10/2016 18:54

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

permanentlyexhaustedpigeon · 28/10/2016 13:21

Good news pen. I'm finding it impossible to find a nursing home that will take my dad too, and feel bad for the bed blocking too.

poisonedbypen · 29/10/2016 18:52

So what happens if they don't find anyone for them? Do they just stay in hospital for the rest of their lives? I spoke to the continuing care team yesterday so at least explained (again) that he needs to be near me. I also emailed to put it in writing. Mind you if no-one will take him its a moot point.

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poisonedbypen · 29/10/2016 18:52

anywhere, not anyone

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hatgirl · 30/10/2016 12:45

No, they will try and take your wishes into account as far as possible but ultimately as soon as they find somewhere that will take him he will probably have to go, wherever it is. They will tell you it can be a temporary placement until somewhere more ideal is found but often families decide not to move their relatives on again once they have settled somewhere.

poisonedbypen · 30/10/2016 22:44

I do realise that's it's difficult, but they hadn't asked me, or even told me that they were looking! The ward sister says it's not the way they usually do it & that I should be given some choices & be able to visit. Again, a moot point if no places available and/or willing to take him. We will see what this week holds. I am so grateful to have the funding but my life will be a nightmare if he is miles away, I'm all he has :(

OP posts:
hatgirl · 31/10/2016 11:00

Yes its very crap, they should be keeping you informed. It might be worth asking if there is a discharge co-ordinator attached to the ward they might be the best person to link things together.

Its also worth approaching nursing homes in the area you want if they arent looking there and suggesting some options to them in case they havnt been considered. Are they looking for something quite specific such as challenging behaviour units for dementia?

poisonedbypen · 31/10/2016 13:26

I don't know, to be honest! He needs help with everything, but isn't particularly challenging. I have mentioned two local homes to them, but that has been ignored. I have a name & a number now, as well as an email address...

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whataboutbob · 31/10/2016 19:19

Pen, we were also told where dad would go. They said there were no places in his home town t hat would cope with his needs. It was a fait accompli. The not having any control over his destination took a bit of getting used to. If I wanted to be cynical I d think it's becauseCCG s negotiate discounted rates in particular homes. It s op probably a

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