Help required - Nice drug treatments

Discussion in 'Dementia-related news and campaigns' started by Gayle, Jul 1, 2005.

  1. Gayle

    Gayle Registered User

    Feb 15, 2005
    11
    London
    Dear TP-ers,

    The draft guidance issued by Nice in March 2005 triggered a massive public response. More than eight thousand people put pen to paper and wrote to Nice to express their serious concern about plans to withdraw drug treatments for Alzheimer’s disease from the NHS. It was the biggest response Nice has ever had to a public consultation and we know that many talking point users got involved in the campaign.

    Since March, Nice has now met to discuss the results of the consultation, and we await its final decision, which we expect in the next few weeks.

    If you or someone you know has experience of drug treatments for Alzheimer’s disease, and would be happy to speak to journalists about why they should continue to be prescribed free on the NHS we would love to hear from you.
    WE NEED YOUR HELP!

    If you are interested, it would be helpful if you could look at the below questions and email us (or send me a private message) to tell us about your experiences of drug treatments. It is important to note that by replying to this thread you are NOT committing yourself to do anything. All you are doing is expressing an interest in speaking to the media. Should we ever ask you to speak to a journalist about your experiences you will always have the right to say ‘no –not this time’.

    If you have any questions or would like further information please call either Hannah, Gayle or Catherine on 020 7306 0813/ 0839 or you can email us at press@alzheimers.org.uk

    Thank you to all those who have already volunteered to speak to the media, we really value your support and maybe in contact soon.

    Many thanks,
    Gayle

    How to join the media campaign and make your voice heard.

    Would you be willing to speak to the media?

    Yes No

    Did you speak out to the media about the draft guidance issued by Nice in March?

    Yes No

    Are you a person with dementia or a carer ?

    If you are a carer, please explain your relationship to the person you care for and how old they are:

    How old are you?

    Where in the country do you live?

    Which drug treatment do you have experience of?

    Aricept Reminyl Exelon Ebixa

    How long have you (or the person you care for) been prescribed this drug?

    Have you (or the person you care for) been subjected to a ‘drug holiday’ i.e. had treatment withdrawn, only for it to be resumed again at a later date.

    Yes No

    Have you (or the person you care for) had your drug treatment withdrawn after moving into care?

    Yes No

    Have you (or the person you care for) had drug treatment withdrawn because you/ they scored less than 12 on the MMSE test?

    Yes No

    If you (or the person you care for) has had drug treatment withdrawn, did you/ they experience a rapid decline?

    Yes No

    If the drugs listed above are withdrawn we fear there may be an inappropriate increase in the prescribing of neuroleptics such as Risperidone or Olanzapine. Do you have experience of these drugs?

    Yes No
     

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