alzheimers drugs withdrawal

Discussion in 'ARCHIVE FORUM: Support discussions' started by storm, Mar 1, 2005.

  1. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi all, Have just seen that N.I.C.E are recomending that no new people with A/D will be given 4 of the drugs used to improve the quality of patients lifes, why you ask because of the cost they admit!I am totaly fuming and going to look into it in more detail. storm
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Thanks Storm and Nada, why is this happening? It makes me so cross, when will they understand this is a real illness with real people suffering! I can't think how they can justify removing medications in this way. Makes you wonder what the future holds. :confused: Love She. XX
     
  3. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    I have put my comments through to NICE, not sure it will do much though. Was a shame I forgot to save them so that I could record them with the society as well.

    karen...
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
    Withdrwal of drugs

    Just as angry as everyone else. I have responded through the NICE site and have emailed both my MP and my MSP (member of Scottish Parliament). Needless to say forgot to save or print off my response to NICE as I was so annoyed as I was writing.

    Izzy
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Mines done too Nada, lets hope we get loads of responses to this. In my paper today, it said that the cost is only a third of what is spent on Viagra, as the draft says, what kind of society are we?..... Love She. XX
     
  6. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Good timing

    Appalled and furious at the recommendations by NICE, I used all the email options available to protest last week.
    Then I arrived at March 7th in my office diary: visit by local MP! I spent a good hour on Sunday, putting all my pent up anger into a couple of pages, addressed to the good man himself, and handed it over before he left the premises this morning. He looked surprised, asked what it was about, and left with a handshake and the promise to read it and respond to it.
    Watch this space .......
    ;)
    Carmen
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Good timing indeed

    WELL DONE CARMEN. Connie
     
  8. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Carmen, well done that girl! Love She. XX :)
     
  9. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Please, I must encourage everyone to write or email there MP.

    I have just received a reply from my lib dem MP Jenny Tongue and we really need more people to make the government aware of the lifeline these drugs provide for patients and their carers. It not so much an immediate panic but the distress this is going to cause newley diagnosed alzheimer's patients and their carers. In the long term it is obvious that these drugs save the government money by allowing us all to cope with home care. You can also bet you life that unless we hound them, it will be very difficulut to get these drugs without prescription.

    You can also write and email Tony Blair directly.

    http://www.number-10.gov.uk/output/Page3.asp

    Thanks
    Craig
     
  10. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    hi everyone

    im confused. does this mean that aricept or donezepil is going to be withdrawn too?

    help
    x x
     
  11. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Jan,

    Aricept is definitely on the hit list. You can find out more here;

    http://www.alzheimers.org.uk/News_and_Campaigns/Campaigning/accesstodrugs_nice.htm

    As far as I know, there is definitely no need to panic, these drugs are not being withdrawn in the short term. The reason for my post is to encourage people to make thier feelings known as soon as possible as the deadline for response to this proposal is 22nd March 2005. The more emails and letters that NICE and the MPs get the better.

    Kind regards
    Craig
     
  12. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    hi

    i have just e mailed tony (mr blair that is) ha. and i put my strong views across and now im going to e mail my local mp and i may even go the local echo aswell to make more people aware of this. this cannot happen.
    j
     
  13. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    I have Emailed everyone I can think of.
    I wrote to NICE and have had a reply today,they cannot answer all my points due to the large number of letters received but my points have been noted.
    Cost them 42 pence postage to tell me that!!!
    Still waiting for a reply from my MP.
    Norman :mad:
     
  14. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Had an acknowledgement from my MP today, and thanks to Craig's posting have just emailed our illustrious Prime Minister.
    Perhaps the PM would like to change places with a 24/7 carer......I think not.
    Connie.
     
  15. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
    Have also now emailed T Blair. No response except an automated one from local MP and nothing from MSP so far. No doubt the replies are in the post!!

    Izzy
     
  16. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    waste of first class stamp

    Remember the letter I handed to MP on Monday (7.3.)? Well, today I have already received a reply dated 8.3. Are you ready for this?
    "XY MP thanks you for your recent communication which will receive attention."
    That's it. On very expensive House of Commons stationery.
    What a waste of time. What a waste of first class postage. And to think that that's what we are all paying for ...... No wonder there's no funding left for dementia drugs!!!!
    :mad:
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi, I've had a reply from mine too, suggesting I "make my feelings known to NICE and giving me the address. Just waffles about it only being a draft proposal yet. Love She. XX :confused:
     
  18. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    After 3 Emails to my MP I got a reply"your comments have been noted"
    I have now sent anothr Email and said"I don't want my comments noted I would like an answer to my question please"
    Keep at em
    Norman :mad:
     
  19. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    letters

    Hello. Thought I would let you know that I have sent off a letter to NICE today, with copies for my MP and the Alzheimer's Society.
     
  20. Kerry-Jane

    Kerry-Jane Registered User

    Feb 9, 2004
    25
    Surrey
    Letters to NICE

    Just a quick note to let you know that I too have contacted NICE, their website kindly lists all the Executive and Non Executive Board members, so they each got a letter from me! Also went the T Blair route as well, I work for one of the leading trade unions so used work headed paper, any way to get through to them!
     

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