Dementia and NHS Continuing Health Care

bujin

Thank you so much everyone, for your kind words and especially your information, in particular Dan and Community Care etc for taking so much time and sharing your experiences, I have a lot to look through, but generally it looks like each case is tested on it's merits and there are no hard andfast rules.

I think we allknow how painfulit is to se the personyou love slowly disappearing so it's even more kind of people to share in this way. I'll try and get back and post any updates, this is great and thanks again.

bujin

Person_one wrote: »

Please don't feel guilty, or convince yourself that you aren't doing right by your dad.

A good quality care home, once he's settled into the routine, can often be much better for people with dementia than having family members struggle on past their capability.

A good care home will have well trained staff, the right equipment for meeting the resident's needs, and regular activities to provide stimulation and social contact. They'll also be able to adapt to his changing needs as his dementia progresses and he needs more care input without any further disruption to his routine and surroundings.

If you take your time and find a place you're happy with, this will probably be the best decision you ever make for your dad. You're doing a good thing, don't beat yourself up about it!

Thank you.

Mr_Toad

growler834 wrote: »

We didn't expect MIL to get it whilst she was still being hoisted into a chair and talking gobbeldygook to everyone but now she is in bed 24/7 & ALL her needs are having to be cared for we hoped that she would be eligible.

Being in bed and incapable doesn't mean she would qualify. As you pointed out in your first post CHC funding is all about medical and social need. Your MIL might be in bed and require 24/7 care but those care needs can be done by non medically trained staff so it's classed as social care and not eligible for CHC. If she needed 24/7 care by trained nurses she would qualify.

I've just gone through a similar assessment for my mother, who is in a care home with dementia. I went through the same process a couple of years ago for my father who also had dementia and died earlier this year.

My father was self funding until the money ran out but the nursing staff and social services still had the same conversations and disagreements after this when Social Services tried to argue for more CHC payments.

I was basically on the sidelines, his care was funded, his savings having been used up, the argument was about who would foot the bill, the NHS or Social Services and in the end most of his care was social.

Likewise with Mum, she is funded as she doesn't have much in the way of savings, most of it was in my fathers name so was used for his care, but the NHS and Social Services still have to agree who pays and neither of them want to if they can get someone else to fund it.

I have nothing but praise for all the people involved in my parents dementia care, the NHS medical staff, the care home and staff and Social Services. Both the homes, they were in separate care homes, were fantastic and the level of care was/is superb.

When Mum went into care in January they tried to put her in the same home as Dad but there was no room. They were working towards getting them together when my father passed away in February.

Bujin, there are hard and fast rules but in some authorities there are people who are prepared to 'interpret' them as best they can, in others the rules are followed strictly.

Tosca3

suze200 wrote: »

Tosca

Sorry for all the questions

Did your Mum & Dad get awarded CHC when they were first diagnosed or when they got more complex healthcare needs?

Where in the country are you?

Do you have any idea of the content of the assessments made?

Mum got CHC about 6 months before she died. Although she was in a cottage hospital at the time of the award and I visited every single day nobody told me she had actually been diagnosed with Dementia.

Dad got CHC awarded in May. I was there at the assessment which was a very transparent procedure. We all went through the scoring together and I was asked for my input on every point.

There are 11 or 12 scoring categories. Dad got no needs on 5 or 6 of them, low needs on 3 or 4 of them. He got 1 Priority and 1 Severe. Sorry, I have left the paperwork at my Dads hence not remembering all the categories. 1 Priority need or 2 severes instantly trigger CHC.

Apart from Dementia neither had other problems, don't mean that to sound trite as Dementia is a huge nightmare in itself.

I will retrieve the paperwork tomorrow, if you have any questions just PM me,

bugslet

When Mr Bugs went into a home, he was assessed for CHC and failed to get it. He had cancer as well as dementia, but the cancer was not active. He died last year, but despite having assets, he never paid for anything bar 16 days of district nurse fees - my limited understanding of it was that he fell into some sort of social fund provided by the council. Frankly it was that byzantine, I lost the will to enquire and it was several months before I realised it was happening - I just kept waiting for the bill!

That's probably not helpful really, but perhaps someone else understands how having failed CHC and having assets in cash of over 23.5k he still didn't pay, and that may help.

bujin wrote: »

when you're considering a Care Home for your parent for me anyway it's the absolutely last resort. It's no longer what's best for them any longer because you can't really argue that a care home will be beneficial to ayone but us. It will be very disruptive and challenging, confusing and distressing for him. Some of my siblings can cope and some can't and we are at the point where we may not be able to continue ifit's down to one of us.
.

Mr Bugs had just started receiving limited home visits when he fell. He then spent four months in hospital ( in terms of medical care, one would have been ample) and then moved into a Care Home. It could well be that moving your Dad into a care home will be good for him as others mentioned. Certainly for Mr Bugs, he was a danger to himself at home and outside, having no concept of the world around him. When he moved from the hospital to the care home, the hospital were supposed to ring, so that I could acoompany him and settle him in as I feared what you fear, that it would be distressing, however, the hospital informed no-one, neither me nor the care home and he just arrived there one afternoon. The care home rang me, I dashed over and found him as happy as larry tucking into his second sponge pudding and custard. I was highly surprised and highly relieved. What we expect is not always what happens. Keeps us on our toes if nothing else!

Tosca3 wrote: »

The disease is about losing thought processes, not recognising even your own family, becoming doubly incontinent and losing the ability to swallow, so eventually you might starve to death whilst bed bound and wearing nappies. I could go on but I won't.

Putting a few pounds on whilst still being able to enjoy some of the pleasures of life is to be rejoiced in my mind. Dementia has no cures or happy endings.
.

Hideous isn't it.:( That's how Mr Bugs died. Everyone of my dogs has died a better death. Nursing and doctors were wonderful, but until there are law changes, they can only try to keep someone comfortable.

Purple Jay, sorry to hear about your recent loss.

monkeyspanner

The following clarification of previous comments may be helpful.

"Continuing Healthcare is for people whose care needs are medical/specialist nursing rather than social care that can be provided by unqualified staff. "
This is no longer the case, the care may be provided to someone in receipt of CHC funding in any setting by any suitably qualified staff. A medical qualification is not a requirement.

"To be blunt - NHS CHC is so difficult to get you practically have to be at death's door to qualify & even then it's not a certainty."
This may well be the case in reality but it is not how the National Framework DST (decision support tool) and Checklist should work. I have also heard medical staff use these terms when talking to relatives and this is incorrect and should not be used to discourage people requesting assessment. In fact patients being discharged from hospital should automatically have at least a checklist performed by qualified staff.

Morglin

We did a 3 hour assessment, went through forms, checklists, decision making tools etc., etc.,

At the end, they said NHS funding wouldn't be granted, and the decision had obviously been made before we did the assessment.

I phoned the Alzhiemers Society, who confirmed this was common place, even though my mother was also in a wheelchair 24/7 and due to that, and the Dementia, could do nothing for herself.

There might be all sorts of tools, policies, and document etc., but, in reality, funding is virtually impossible to obtain, unless someone literally has to tube fed and requires constant nursing.

I can, of course, only speak for Greenwich and Bexley HA.

A farce.

Lin

Errata

CHC funding is a farce, like everything else in healthcare it's a postcode lottery. Even if someone is assessed as eligible for funding that doesn't mean funding for that person in their area is available.

margf

Hi
I attended a best interest meeting with a friend last Thursday (her Father is in hospital) whilst I have experience of a successful retrospective claim I have no experience in procedures for current claims, and am looking for advise / information on the points below please

It was agreed that a full CHC Assessment would be carried out (advised this would be 3 weeks after discharge to a Nursing home) The Social worker advised us that the Nursing element of the care had already been granted(around £108 per week) alarm bells rang for me when on 2 occasions the consultant asked her to confirm this followed by the staff nurse present repeating the same. Anyone any thought/comments on this? I have found a little info on another site with no explanation why here is what it states '' Eligibility for NHS funded nursing care in a nursing home should not be considered until it has been agreed you are not eligible for NHS continuing healthcare.''

1.Why are they not doing the assessment whilst he is in hospital?


2.Why has NHS funded Nursing Care been granted prior to the assessment for continuing healthcare been carried out?

3. Why should the NHS Funded nursing care not be considered?

Advise would be greatly appreciated

Thanks

monkeyspanner

margf wrote: »

Hi
I attended a best interest meeting with a friend last Thursday (her Father is in hospital) whilst I have experience of a successful retrospective claim I have no experience in procedures for current claims, and am looking for advise / information on the points below please

It was agreed that a full CHC Assessment would be carried out (advised this would be 3 weeks after discharge to a Nursing home) The Social worker advised us that the Nursing element of the care had already been granted(around £108 per week) alarm bells rang for me when on 2 occasions the consultant asked her to confirm this followed by the staff nurse present repeating the same. Anyone any thought/comments on this? I have found a little info on another site with no explanation why here is what it states '' Eligibility for NHS funded nursing care in a nursing home should not be considered until it has been agreed you are not eligible for NHS continuing healthcare.''

1.Why are they not doing the assessment whilst he is in hospital?


2.Why has NHS funded Nursing Care been granted prior to the assessment for continuing healthcare been carried out?

3. Why should the NHS Funded nursing care not be considered?

Advise would be greatly appreciated

Thanks

Like you it is some time since I had direct experience of CHC assessment. But as you say it is my understanding that the nursing supplement would be the fall back position following an unsuccessful CHC assessment. I would be concerned that there is some prejudging of what the assessment outcome will be. I believe that under CRAG rules only the initial chcklist assessment should be done prior to discharge. If a decision has been made that a a full assessment be made it sounds like the initial checklist has been done.