NHS funding for dementia sufferers

[sjb]

Can anyone tell me if they have been successful in obtaining funding from the NHS for dementia sufferers, and if so, how long the process took? I'd be especially interested to hear if anyone had to go through the appeal process, and whether, if the outcome was successful, when the funding was backdated to - date of MDT (multi-disciplinary meeting)at which the case was discussed, or date of the *referral* for funding. I suspect this is another kind of postcode lottery, and that practice varies from one PCT to another. I'd be interested to bring together examples from different areas.

Many thanks if you're able to help. For info, the National Framework for Continuing Healthcare says that most decisions on funding should take place within two weeks - in our case it took eighteen months.

 

[Clive]

My mum’s case is now a little dated and was quite unique but…

I was told by the NHS Assessment Ward that mum would not get NHS CC for her AD, so I moved her back home. I provided her with plenty of Care from myself and both professional and voluntary Carers… but received nothing from Social Services.

Months later the Consultant at the NHS Memory Clinic mum attended said she needed EMI Residential Care but she would not qualify for NHS CC… and stopped mum's prescription for Aricept.

I asked Social Services to assess mum to help me decide what to do. When they had not come after 8 weeks I decided that mum had to go into an EMI Home for her own safety, and I arranged the move myself.

After 3 months or so, (taking my role as mum’s Power of Attorney very very seriously, and being annoyed by my MP’s assurance that people with AD did receive NHS CC), I decided to apply to the Primary Care Trust for the area where mum now resided. The process, from first asking the NHS for the address of the PCT to receiving the repayment cheque in 2008, took 18 months and two panel meetings and a lot of time and effort.

Eventually mum was repaid for all but 6 weeks of her stay in EMI Residential Homes.

My case didn’t fit into any of the usual boxes… but does show what can happen.

Clive

 

[susiesue]

Clive, would you know whether early onset sufferers could be financed by the NHS, afterall early onset is not age related so therefore I would have thought it is a 'disease' of the brain, similar to heart disease or lung disease or whatever.

I'm pretty sure I know the answer but wondered if you knew.

Thanks

 

[sue38]

Hi sjb

We have our MDT meeting this afternoon, so I may be better informed later today, but in the meantime this document makes interesting reading:-

http://www.theyworkforyou.com/wrans/?id=2008-06-18c.211086.h&c=22462#c22462

There have been quite a few threads which may give you further information. If you click on the Search tool (in the Green Band towards the top of the page) you should be able to find lots of useful stuff. When using the search function the key word must be more than 3 letters - so 'NHS' and 'CC' won't give you any results.

 

[BeckyJan]

Sjb - firstly Yes I did get CC for my husband after an appeal - the Assessment Ward nurses made a poor application/process and I let them due to ignorance. After alot of studying of Nat.Framework and Advice I appealed and won. My husband did qualify for the nursing element for his Care Home and he did have other problems other than dementia.

I got an answer after 1 month but I had to chase in writing quoting the 2 weeks (? para 63 - too busy to look it up at present). Still waiting for refund.

SusieSue: I think it unlikely that early dementia sufferers would get CC - depending on what they ticked in the domain boxes. But in truth early onset heart or kidney disease is unlikely to get CC either unless so serious it had to be fasttracked.

I do believe the failings in Cont.Care is the lack of knowledge at ground level by S.Workers and the Mental Health Team nursing staff (in our area anyway).
I was very impressed with the peer nursing review at our appeal - kind, thorough and very efficient.

Must dash - almost too busy to think straight!
Jan

 

[Trying my best]

My mum was recently awarded full NHS funding for 24 hour care, which she will be recieving in her own home. We have been told that this will be backdated to the date of the multidisciplinary team assessment, providing that all payments can be traced (ie by cheque or payroll) as she was self-funding before this funding came through.

Incidentally, my mum has early onset dementia - it started in her
late 50s - but I don't think this had any bearing whatsoever on her getting the funding. She got her funding because she scored very highly on many of the 'care domains' - particularly cognition, emotional/psychological, behaviour, communication, nutrition and incontinence.

Also, I completely agree that the main problem is that social workers etc for the most part have no idea what CC funding is about or who should get it, particularly when it comes to dementia.

 

[CYN]

granted in retrospect

just before my husband passed away, 3 days actually, he was refused cc. i still pursued the pct for a refund of his payments for the three months he was in 3 nursing homes.they finaly agreed to refund all payments(in retrospect)i did know they were supposed to also pay interest on the monies this was not offered and so i jogged their memories and i was paid this also.

my husband had heart disease ,asthma, hiatus hernia as well as vas dem.

Cynthia x x

 

[milly123]

same boat

hi reading with special intrest i have a meeting on tuesday with sw and pct at the nh my husband has gone into the sw said she didn't think i would get cc but she did say she had marked him high the dr from the hospital visited him two months ago he said he should be in 24hr care at that time i was reluctant to let him go butthings just got worse i will let you know how i get on hope we both have some luck milly123

 

[Bogle]

NHS funding

This is my first post...please be gentle!!!
Mother nearly 90. Has Alzheimers, dementia and is 95% deaf. Was having nurses call in every day to make sure takes pills. Was told we had to then organise this ourselves. Doctors said it was Social services job, Social ervices said it was medical. neither would help so we arranged prive daily visit costing 3215 per month. She fell over a month ago and broke neck of humerus. Docs say cannot be pinned nor fixated. She must put up with it and hope it heals a bit. Yes...it's her right shoulder and she is right handed. Whilst she was in hospital, we discovered self neglect to the point that it is impossible for her to return home. we had a call from Social Services saying that as she is in a residentioal home, they cannot offer any funding assistance. (She has £40k savings and a small flat.) I say that she needs constant supervision because of useless right arm and the alzheimers / dementia. They say that's irrelevant. I said I would challenge the decision. Oh.....and on her second day in the home, they mistook her for a male with a totally different name, and gave her a huge insulin injection. What larks eh?
Do I have any legs to stand on to challenge this funding decision?
Thanks chaps!!

 

[2jays]

This is my first post...please be gentle!!!
Mother nearly 90. Has Alzheimers, dementia and is 95% deaf. Was having nurses call in every day to make sure takes pills. Was told we had to then organise this ourselves. Doctors said it was Social services job, Social ervices said it was medical. neither would help so we arranged prive daily visit costing 3215 per month. She fell over a month ago and broke neck of humerus. Docs say cannot be pinned nor fixated. She must put up with it and hope it heals a bit. Yes...it's her right shoulder and she is right handed. Whilst she was in hospital, we discovered self neglect to the point that it is impossible for her to return home. we had a call from Social Services saying that as she is in a residentioal home, they cannot offer any funding assistance. (She has £40k savings and a small flat.) I say that she needs constant supervision because of useless right arm and the alzheimers / dementia. They say that's irrelevant. I said I would challenge the decision. Oh.....and on her second day in the home, they mistook her for a male with a totally different name, and gave her a huge insulin injection. What larks eh?
Do I have any legs to stand on to challenge this funding decision?
Thanks chaps!!

Hi Bogle
Welcome to Talking Point (TP)

May I very gently suggest you post a new thread of your own? That way you will get a lot more support. I think you do have a case to argue, but others, I know, will have more experience of how to apply for and challenge the decision. I also think you have reason to complain about the insulin error

To start your own thread, click on Forum Home
At the top left there is a "button" post new thread
And away you go

Keep posting there is always someone around who knows exactly how you feel and there is a wealth of information and support on here

Julia

 

[Bogle]

Hi Bogle
Welcome to Talking Point (TP)

May I very gently suggest you post a new thread of your own? That way you will get a lot more support. I think you do have a case to argue, but others, I know, will have more experience of how to apply for and challenge the decision. I also think you have reason to complain about the insulin error

To start your own thread, click on Forum Home
At the top left there is a "button" post new thread
And away you go

Keep posting there is always someone around who knows exactly how you feel and there is a wealth of information and support on here

Julia

Tried to repost as new thread....it said not accepting new threads...arghhhhhhh

 

[crazyfish]

This is my first post...please be gentle!!!
Mother nearly 90. Has Alzheimers, dementia and is 95% deaf. Was having nurses call in every day to make sure takes pills. Was told we had to then organise this ourselves. Doctors said it was Social services job, Social ervices said it was medical. neither would help so we arranged prive daily visit costing 3215 per month. She fell over a month ago and broke neck of humerus. Docs say cannot be pinned nor fixated. She must put up with it and hope it heals a bit. Yes...it's her right shoulder and she is right handed. Whilst she was in hospital, we discovered self neglect to the point that it is impossible for her to return home. we had a call from Social Services saying that as she is in a residentioal home, they cannot offer any funding assistance. (She has £40k savings and a small flat.) I say that she needs constant supervision because of useless right arm and the alzheimers / dementia. They say that's irrelevant. I said I would challenge the decision. Oh.....and on her second day in the home, they mistook her for a male with a totally different name, and gave her a huge insulin injection. What larks eh?
Do I have any legs to stand on to challenge this funding decision?
Thanks chaps!!

Hi Bogle,
Welcome
Looks like you have a lot to deal with.
Firstly you say you had a call from the SS saying your mum had been placed in a care home.
Had you not had any discussions with the discharge team at the hospital before this point.
Who placed you mum in the care home .... The SS or the NHS ?
Do not give any financial details or agree to a means test before you get up to speed with all this.
It can be very complicated but don't believe everything you are told by the SS or NHS check everything out first.
Get everything in writing.
Do not sign anything.
Download the Continuing health care framework .
It's a long read but this is what you will have to deal with.
And as already said try and start a new thread.
Mick

 

[Worried Nurse]

Peer nursing review

I was very impressed with the peer nursing review at our appeal - kind, thorough and very efficient.

I am really interested to learn more about the peer nursing review, especially as you found it so reassuring.

I do feel for all of you who feel you are going into 'battle'. I also come from the standpoint, as do most of my colleagues, that care should be free at the point of need, regardless who is responsible for providing or commissioning the care.