advice about chc

[ally12]

Hi
Haven't posted in a long time, been far too busy just coping with life, visiting fil in nursing home, selling his bungalow and generaly coping with family life. Now need some advice on whether to appeal against chc being turned down...
Just a bit of background, fil is 86 and has had alzheimers for a number of years and we had been managing to keep him in his own home with at least twice daily visits from us until he had a stroke. Stroke was fairly mild in stroke terms but left him with a left sided weakness, unable to walk or look after himself, dress wash etc. The worst bit was the AD meant he couldn't remember any of these things so was at too great a risk to remain in his own home and moved from hospital to a nursing home.
We applied for chc and 6 months later predictably it has been turned down. My question is whether it is worth us appealing against this decision?? His personality is such that he is fairly compliant with most things and appears at firt meeting to have some insight into his memery loss and his needs although the reality is quite different, e.g he will refuse a drink when offered one and a few minutes later get quite cross when everyone else has a drink and he hasn't or he will one minute say something that appears quite appropriate followed by completely inappropriate conversation. His memory is 'of the moment' and he could never live independantly again. The assessment apears to ignore the fact that his memory affects all the domains and focuses on what he would be capable of given no memory loss. It also makes no mention specifically of Alzheimers just senile dementia it's as if they are afriad to mention AD in case that diagnosis alters the assessment. We are aware that he isn't as bad as others who have been turned down for chc but I still feel we shouldn't just let it pass without appealing what do other members think?
Apologies for long winded post it's hard to explain things in a few words.

 

[Sandy]

Hi ally,

You might want to contact the Alzheimer's Society's volunteer group that assists with NHS CC appeals:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200310&documentID=398

It also makes no mention specifically of Alzheimers just senile dementia it's as if they are afriad to mention AD in case that diagnosis alters the assessment.

As far as diagnosis goes, my understanding is that the needs are assessed and the diagnosis is irrelevant.

Take care,

 

[Nebiroth]

It is never a waste of time to appeal. The worst that can happen is that you will lose it, leaving you no worse off than before.

I believe that assessments are based around needs, rather than specific diagnosis.

However, what may be an issue is whether those needs are created by a medical condition, or not.

This is an aspect of continuing care that causes great controversy - because the NHS will only fund someone if their needs are derived from what they recognise as an illness. If they are, you get funded, if not, they are categorised as "social care". For example:

If you need a lot of help because you had say leukemia, you would qualify.

If you need the same help because you are "merely" old and frail, then you don't.

Because being old and frail isn't an actual illness, and falls outside of the remit of the NHS.

Another source of controversy is that dementia (of all types) is sometimes not recognised as an illness and thus people have been denied CHC - even though this is patent nonsense. There have been cases where the NHS has been forced to pay up backdated care fees. It may be a hangover from when "dementia" was a more generalised term and regarded as simply being an inevitable consequence of age (much like increasing frailty). It is now known that this is not true. Alzheimers, for example, is a degenerative, organic condition of the brain.

"Senile dementia" is a term that has long fallen out of use. It quite literally means "of old age" and "deprived of mind".

It has been replaced by the disease specific terms: for example, Alzheimer's Disease.

I suppose "senile dementia" might still be used as a catch-all for elderly people with dementia.

I don't know if it has any relevence to the assessment but it would do no harm to raise the point if you appeal, particularly if you have had a firm diagnosis of Alzheimer's Disease.

As a layperson it does sound to me as though Alzheimer's Disease as opposed to senile dementia might have different relevencies when it comes to CHC assessment.

 

[MJK]

HI Ally,

I can't help much I'm afraid, but I just wanted to say that we are in a similar position.

My Mum has just been turned down for CHC funding for the second time (last week). We applied intitially last year and she was refused. Whilst we were in the process of appealing she fell and broke her hip and is now completly immobile (prior to this she was fully and independently mobile).

She has severe AD and is only 72. She cannot communicate, she cannot feed herself, she is doubly incontinent and catheterised. SHe is at high risk of skin breakdown due to her incontinence coupled with her immobility. She suffers from auditory hallucinations which cause her distress, and until her fall displayed challenging behaviour. She cannot swallow tablets so her Aricept was recently stopped. Not only is she immobile but she can't cooperate with carers when they attempt to move her. She is completely unable to assess any needs or dangers so is completely reliant on others for care. She was previously in a Care Home, we are now told she must go into a Nursing Home.

Despite all of the above, she apparently does not have "Primary Health Need". Even though it is all caused by AD!! The whole thing is infuriating! If she didn't have AD - a physical disease of the brain - she would be a healthy woman!

Anyway, rant over. I'm just trying to show how difficult it is to get it.

Ally, I would say you should appeal, and keep applying, assuming that's turned down - what's there to lose except time? I'm going to appeal for my Mum. I have previously received advice from the Alzheimer Society's volunteer group, and the woman who helped me was great. Really knowledgeable and spent ages patiently offering suggestions about my Mum's case.

Anyway, good luck with the fight Ally.From everytihg I've been told it seems that very few people get funding but those who do are the ones who keep trying and become a nuisance!

 

[Clive]

Do appeal.

They do not always get it right.

It took me 18 months to get mum’s CC, and it was eventually backdated.

Do get help from the AS. I also got help from my MP (after many eye to eye meetings).

Best wishes

Clive

 

[ally12]

Thanks for your replies, Its always nice to know there is someone out there even if I don't post very often.
I almost feel guilty appealing as fil is clearly not as bad as others who have been turned down for funding, but I feel on principle we should fight this not just for him but for others too, it seems so unfair that having fought for his country and worked hard all his working life that he now has to pay vast sums of money in his time of need.I will certainly contact the AS for advice before we make a decision on whether to proceed with the appeal. The only good thing about this whole situation is that we managed to find an excellent nursing home where the staff really seem to care and make great efforts to meet his needs, so many others seem much less fortunate. Good quality care should be the rule not the exception.

 

[Starshine]

Hi Ally
Keep appealing, your as entitled as anyone to receive the funding, don't give up, that's just what they would want you to do. This is an awful disease and affects us the carer's as well as the sufferers. Help should be available to us all.

Starshine x