alzheimers drugs withdrawal

jools

Registered User
Jun 29, 2004
39
Hi everyone,

Just e mailed NICE. they're anything but nice; all that blinding of science about MMSEs and 'cognitive funtion'. Yes, we all know Aricept doesnt restore the memory but it does cut out aggression, hallucinations and the like and that's what important to us. As for ruddy MMSEs, has anyone ever had a proper MMSE done? My mum took one look at the consultant, decided she didn't like her and refused to answer any questions. What a load of cobblers..

Printed out my reply, and will send it to the Society. What a society we're living in. Maybe we should all stop breathing and die so that we save the government money..

Jools
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
My experince of writing to any body is that the letter will be passed to the appropriate person,as seen by them.
Prime minister to local MP,only the local MP deals with their own constituants.
Societies, the chief executive or in the case of NICE "communications Executive".
I am sick of trying to get an answer from my MP.
Norman :mad:
 

Chris

Registered User
May 20, 2003
243
MPs 'surgeries '

Dont know if this happens everywhere - but here our local MPs have regular surgeries where you can make an appointment for a 1:1 session with them - dont know how easy it is to get a slot - but some local carers have taken problems to MP by this route.

At least you have their attention eyebal to eyeball - only snag is these surgeries are at a set time (usually a Saturday am ) which may not be convenient.

Just a thought. Chris
 

Brenda

Registered User
Jul 21, 2004
15
Devon
MPs Etc

Hi sometime ago I emailed Tony Blair but have had no response so I wrote to him as he had appeared on TV saying he was going to listen to people. Wrote on several issues regarding Alzheimer's and other things and got a nice official envelope and headed expensive paper to tell me that they had passed my letter onto the DWP as Mr Blair was very busy!!!
I don't give up easily and have written back asking them to actually read my letter and that it had very little to do with the DWP as my main gripe was that Alzheimer's doesn't appear to be a disease as far as the government are concerned,this was about funding for care now carers and sufferers have received another blow from NICE I have emailed the AD society sent them a copy of my letter to NICE emailed my MP and sent off the postcard sent me by the Alzheimer's Society.I will continue to fight but I am very angry there always seems to be enough money for Wars !!
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Chris
all areas MPs And councillers hold surgeries,never been to one.
Im the past I was able to get answers and replies from my MP,alas he is now a Lord and the new MP!!!!!!!
kEEP TRYING
NORMAN
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,020
68
Dundee
Just received a reply from my MSP's assistant. I've cut and pasted it below. I was interested in the information re Scotland and NICE having no powers there even though the Consortium still tends to following their rulings.

Iz

MSP's reply:
Shona has asked me to let you know that she has written to Andy Kerr, the Minister for Health, seeking assurances that Aricept will remain available to people suffering from Alzheimer's. We were concerned to learn of the NICE ruling given there is such a limited choice of treatments available to people suffering with Alzheimer's, however, while the Scottish Medicines Consortium tend to follow NICE rulings there is no obligation to do so. NICE is an English body and has no powers in Scotland.

If you would like to give me a postal address I will ensure you receive a copy of the Minister's response as soon as Shona hears back from him.

Yours sincerely
Cate Nicholl
Parliamentary Assistant to Shona Robison MSP
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I emailed my MP, James Arbuthnot, and received the following reply today:

Thank you for your email of 8th March about NICE's draft guidance on drugs for the treatment of dementia. I have a great deal of sympathy with the important points you make, and am most grateful to you for setting out your concerns so clearly. I am raising them with the Chief Executive of NICE, and as soon as I hear from him I shall write again.
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
I have received an answer from my MP Mr KHALID Mahmood:
"Thank you for your Email, your comments have been noted"
I have replied as follows:"I don't want my comments noted,I would like an answer to my comments please" No answer so far.

Answer from Liberals below:.
Dear Norman

The proposals from NICE on dementia drugs are deeply worrying and I hope
they are withdrawn. NICE is getting mixed up between cost-saving and
giving advice on the efficacy of drugs.

I was formally selected as parliamentary candidate for Perry Barr on Friday
but have been active since the last general election. I will check to see
why you have not received any literature recently.

regards

Councillor Jon Hunt
Liberal Democrat, Perry Barr ward
---------------------- Forwarded by Jon Hunt/Members/BCC on 14/03/2005
I wonder how will I vote this time????

Norman
 

terryofwv

Registered User
Mar 18, 2005
2
wv
Getting off Aricept

Hello all, I have been taking care of my father, and have read alot of your stuff and I am still confussed. My father is 73 and came down with cancer, during his treatments his memory was somewhat forgetfull and the doctor said that is common with his treatments and put him on aricept. He is now cancer free :) and has been on the aricept for 4 months, and has no appetite and is down to 133lbs.
He refuses to go back to the doctor. says he wants to have this summer. His memory isn't getting better, and I can't find out what will happen if he quits the aricept to gain weight. I called him tonight and said to at least take one every other day, I am just lost, and have never participated like this I am so lost. Any help/info on side effects I would greatly appreciate it. Thanks to any everyone for anything.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Terry

Sorry to hear your story.

I had no idea that Aricept could be prescribed without a formal diagnosis of dementia - just being forgetful during treatment seems a little bizarre...

I'd get a check done to see if he has dementia; if not, check that Aricept is appropriate.
 

terryofwv

Registered User
Mar 18, 2005
2
wv
Thanks for the support

It was my dad's cancer doctor that put him on the Aricept, He was tested over a year ago at the VA for Alzheimer's and they said he didn't have it. But the doctor that treated him for cancer said people his age will loose memory with the chemo.
I told him to just try taking it everyother night in stead of quitting cold turkey, and to take it at night to see if that didn't help him. I read a lot of your letters and figure why not give this a try. He refuses to go back to doctors for awhile, says he just wants to enjoy this summer, can't really say I blame him, he was so sick for so long. again, thanks so much,

Terry
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Terry

fine, enjoy summer as long as the [possible] side effects are not causing too much of a problem.

However, I don't think that Aricept is really an area of knowledge for a cancer specialist [of course I may be wrong!]. It isn't, as far as I know, a means of restoring memory for all and sundry [otherwise I'd get some myself!]
 

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