NICE's proposals to withdraw dementia drugs

[Lynne]

Ref. NICE's proposals to withdraw dementia drugs , I spoke to my own GP about this, (in the context of a discussion about my Mum) and he said that he thought it very unlikely they (or the Government) would dare or be able to.

'Dare' because he thought there would be a major revolt by GPs & clinicians, and 'be able to' because that would mean a huge number of AD-sufferers presently able to live at home (with help) would then descend en masse into the EMI care home situation, which wouldn't be able to cope.

I realise that's only one man's opinion, but just thought I'd throw it into the mix as food for thought for anyone panicking about it.

 

[Lynne]

I didn't mean to sound complacent, and have already written to my MP. I just thought it might be interesting to have an opinion "from the horse's mouth" as opposed to one filtered through, or slanted by, the media.

I am sending a copy of your response to my GP. If I get a response, I'll let you know.

Regards

 

[Kathleen]

Hello Lynn

Please can I have your GP for my poor Mum.

I wrote to my MP and the press, I begged and pleaded with the psychiatrist ,but Mum still came off galantamine which may not have been helping her, but was doing no harm either.

The results have been dreadful for her to endure and us to witness, but maybe as she is already in a rest home, her rapid deterioration will mean she will not live as long and so free up a placement for someone else.

Or maybe I am just a being cynical!

Sorry if I sound bitter, but that's how I feel.

Kathleen
xx

 

[Lynne]

Further to exchanges here last week, I have since received a reply from my MP.

Oh Dear

It turns out that he is the Patron of the W. Suffolk Alzheimer's Society (which I had not known) so I was really preaching to the converted!!! Doh!!!
As such he has been in frequent contact with the Minister of State at the Dept. of Health, asking for an appropriate conclusion and no further delays in making public their findings. He kindly provided me with copies of some of the correspondence.

SO, anyone here living in Suffolk or Cambridgeshire, please do write to David Ruffley (MP for Bury St. Edmunds constituency) c/o House of Commons, London SW1A 0AA, or Email office@bseca.org and press the case, as he is very sympathetic to the subject.

 

[daughter]

Excellent Lynne, we spend so long fighting for these things and expecting to meet (at best) apathy, that it's great to have a positive response. Another voice backing David Ruffley's efforts can only strengthen his case, and his resolve. Well done you.

 

[Norman]

Lynne
how wonderful for you and for the Society to find your MP is with us.
I wish mine was but I will have another go at him and see what happens
Well done
Norman.

 

[Kathleen]

Like Norman I wish my MP was more like yours.

Mine is a conservative and, of course, his response is that when the conservatives are back at no 10, dementia sufferers and their carers will get the best of everything!!!

Not much help from that quarter then, all sympathy and no action.

Kathleen
xx

 

[Norman]

May I remind everyone ,if they haven't already done so to Email their MP regarding NICE and their expected report on drugs for dementia.

Log on to http://www.alzheimers.org.uk/ on there is a ready made template (the first item on the page) to send to your MP,you may alter it to include any comments you may wish to make
Norman

 

[Dearth]

May I remind everyone ,if they haven't already done so to Email their MP regarding NICE and their expected report on drugs for dementia.

Yep, it only takes a few minutes to do so, I did that and got a reply back which included a copy of a letter from Jane Kennedy (Dept. Of Health).

The letter basically gives info. on NICE guidelines and comments on cost effectiveness of drugs and treatments in general, it does also include the following:

NICE consulted on its draft guidance on drugs for the treatment of Alzheimer's disease in March and received an unprecedented number of replies. The Institute is working through the issues raised as part of the consultation and the best way of handling them, including a further very focused consultation which was announced on 19 July. Until NICE publishes its final guidance, the guidance issued in 2001 continues to apply.



As well as sending that email, I've promoted the campaign on numerous websites and forums, plus I took a LOAD of the postcards into University and all of them were taken by fellow students to complete and post.

Fingers crossed for a pos. result for everyone's efforts!



N.

 

[Norman]

I did try my MP again,he has turned up trumps.
I have had a very nice reply from him and a copy of the letter which he has sent to Rt Hon Patricia Hewitt MP,Secretary of State for Health,which he hopes will encourage her act firmly on this issue.
The letter asks that the drugs for dementia are are available on the NHS,and stresses the importance of considering the social costs bore by carers and their families not simply the cost to the NHS.
He asks the minister for a reply ASAP.
Keep you posted
Norman

 

[Lynne]

Strike, Norman!!