General Chat

I agree Brian. People think it is an old persons disease but I know of a few young people one of 46 and several in their 50's. We lost a friend to it in her 50's she had been mis diagnosed because she was so young! It can strike any family at any time! Linda x

The husband of a work colleague of my wife is a sufferer, aged about 60. Withdrawal of any treatment is criminal. NICE is nasty.

If you read what the help site says, it may be withdrawn in July for existing patients. So the time to protest is NOW. There are thousands of us in this position and if we all send just one e mail or letter that should register a MASSIVE protest. Why should newly diagnosed cases be denied the right to treatment that will enable them to continue living in their familiar surroundings with the love and help of family, thus saving the state a considerable amount of money. Linda x

I thought it said that it would not be given to NEW referals. Hope that was right and you will not be effected

oh that is awful linda.why is it in this country money means more to them then peoples wellbeing.hope you get the response with your mp.i did when a problem at my daughters school could not be resolved by the school.was sorted out virtually straight awayxxxx(:

Hi Linda I agree that this is appalling and have just mailed my MP - If everyone's protest is long as mine - Westminster's server is not going to be able to cope! I am with you all the way on this one. Mags xxx

Linda I am very sorry to hear about this and I will write too. Very best of luck. Daisy

The point is Val every patient will be affected in England and Wales. So don't delay PROTEST. Linda x

Linda, I totally agree with everything you say. My mother was on Aricept until recently, but it should be every patient's choice that matters, not the cost issue. How can these people prioritise over who should have which treatment, they need to experience caring for someone with Alzheimers to see what a difference treatment makes. yours disgustedly ( and from near Tunbridge Wells!!!) Sue

They are being stupid my mum has dementia I don't know what medication she is on but I would not let it rest keep on at them I would for my mum

Net costs of drug treatments (one week supply): - Donepezil £17 to £24 (dependent upon dose) ARICEPT - Galantamine £17 to £21(dependent upon dose) - Rivastigmine £17 (two capsules of any dose) - Memantine £19 Approximate costs of care: - 30-minute visit from a social worker £47 - Ten hours of home care £90 - One week home care package (median) £346 - One week respite care £611 - Five-day hospital investigation for dementia (acute) £825 - One week hospital admission (long stay) £1190 A very simple calculation would seem to suggest that if drug treatment for one year saved as little as one week of long stay care, the cost would be recouped. I REST MY CASE!! I will be unashamedly bumping this message for the rest of today and hope that many of you will e mail your MP's in protest.

Hi Linda, Now is the time to get on to MPs, they are wanting votes let them earn them. Its rediculous the way they are letting the NHS slip downwards. regardless of people's health. I'm very pleased to hear Vic has been getting better. Love to you both, June xx

Access to drugs for people with dementia Stop press ... Stop press ... Stop press ... Nice declares drugs for dementia too expensive to be prescribed on NHS On 28 February 2005, Nice (National Institute for Clinical Excellence) issued draft guidance which says that Reminyl, Aricept, Exelon are clinically effective but not cost effective treatments for Alzheimer’s disease and should not be made available free on the NHS. Nice also says that Ebixa is not clinically or cost effective. Nice confirms that there is now strong evidence that Aricept, Exelon and Reminyl work for the treatment of Alzheimer’s disease. But, Nice believes that the NHS cannot afford to spend £2.50 a day per person on this treatment. The Society questions how much value Nice places on improving the lives of people with dementia. Please act now to stop this guidance becoming final 1. Contact Nice The Alzheimer's Society has identified three key issues which the Society believes will have the most impact on the Nice decision Help to write effective letters to Nice 2. Contact your MP Email your MP now from this website Your comments must reach Nice by 22 March 2005 Contact Nice online You can read the Nice guidance and comment on it via the Nice website NICE website - www.nice.org.uk It would help us if you could tell us what you have told Nice, please email your comment to [email protected] Write to Nice: Alternatively you can write to Nice Alana Miller National Institute for Clinical Excellence MidCity Place 71 High Holborn London WC1V 6NA Please copy your letter to: Policy officer Alzheimer's Society Gordon House 10 Greencoat Place London SW1P 1PH THANK YOU

Just been on the Alzheimers help site and they say existing patients may not get it after July and newly diagnosed not at all. This time last year Vic didn't talk to anyone and was very withdrawn but the effect of the medication has been startling, and he is now enjoying life again. Any help in slowing down the progression of this awful disease should be encouraged not stopped. Linda x PS The press are already on to it.

Linda, Go to the press and tell them. should get results. or write to your authority and tell them what you intend. Happy days.

Hi Linda, I'm pretty sure as I understand it you don't have to worry as it'll effect new patients and not those on the medication already. I hope this reassures you, but I think you need to speak directly to your husband's doctor. Jude xx

Linda. This is awful for you and morally wrong. Can you get your local paper involved maybe? BC

I am behind you all the way here Linda, In the papers today it says it cost the NHS only £2.50 for this course of treatment for one patient- but they are claiming if the person is already on the course of treatment they WILL continue but new patients wont get it.

that's appalling!!! I do hope they find a suitable alternative. Pink xx

My husband is in the early stages of Dementia and I can't believe that the drug he is on maybe withdrawn due to the cost! He has had a wonderful response to the treatment and now may not be able to have it after July. I am so hurt and angry. I have written to my MP and hope many of you will do the same all patients in England and Wales are affected. Linda x