Lost NHS Continuing Care funding as Alzheimer's progresses ?

[Ever hopeful]

I am interested in hearing whether you know of any Alzheimer's sufferers who has lost NHS Continuing Care funding as their condition deteriorates?

Last year my mother, who has advanced Alzheimer's, was assessed as being eligible to have her care home fees fully funded by the NHS, and was refunded a substantial amount of money for the fees she had wrongly paid to date. This was after our family fought through a lengthy appeal process. Her care home fees were fully funded for a year.

A year later she has been turned down for NHS Continuing Care even though her condition is substantially the same, if anything worse.

Has anyone else had a similar distressing experience? The professionals in the MDT said this was common.

It is hard to keep fighting but would help to know that we are not alone

[Boudeca2007]

We only managed to acheive NHS Full Funding for the last 5 months of my Mum's life - she had Gangrene of her foot so I don't think they could say that she didn't then have a Primary Health Need. She had been in EMI Nursing homes since 2004 and we are now retrospectively pursuing these dates. The only time they assessed her was for Oct 07-Aug 08. We have had 3 DST;s, 2IRP's,2 Ombudsman decisions all have come to nought - and that was with the help of a specialist Solicitor. Considering Mum had severe Fronto Temporal Dementia, severe to nil cognitive function, nil communcation ability , had been falling at least once a month and had swallowing / risk of choking difficulties / weight loss we still can't understand why they turned her down for CHC!! So I'm sorry to say that CHC has become increasing hard to get in the last few years as the PCT's/SHA's downplay real health needs and like to say [ a lot ] that ' needs are being managed ' therefore no ' Primary Health Needs ' . We also have to fulfill their ' criteria ' of Intensity/Unpredicatability/Nature of health needs if we don't then funding will either be turned down or withdrawn.

All I can recommend you to do is read up on the National Framework and just keep appealling their decision. They should not withdraw full funding until all the appeal procedures have been exhausted. That is a very important point to remember

[BeckyJan]

When the needs are no longer considered to be complex or predictable then it is common for CHC to be withdrawn.

I believe it is worth you appealing yet again. If you need support with this the Alzheimer's Society NHS Continuing Care Volunteer Support Group are excellent. This is the link to them:
http://alzheimers.org.uk/site/script...documentID=398

Best wishes and good luck.