Re: E-petition to go to the 10 Downing Street website for Dementia Drugs‏

Discussion in 'Dementia-related news and campaigns' started by Pat1066, Sep 28, 2007.

  1. Pat1066

    Pat1066 Registered User

    Sep 25, 2007
    17
    London
    #1 Pat1066, Sep 28, 2007
    Last edited: Oct 4, 2007
    Dear All :)

    My Father was diagnosed with Alzheimer's Disease 2 years ago and his condition has rapidly deteriorated. He no longer recognises my Mum, his children or grandchildren and is totally dependant on others to do everything for him. This has had a devastating affect on the whole family and to see him succumb to this cruel and horrible disease is so distressing.

    I'm so glad that I've discovered this site, as it's comforting to know that you are not alone, and that we're all going through the same thing. Reading so many people's experiences has helped me come to terms with what's happening.

    I'm sure most of you on this forum are aware of the link:
    http://www.alzheimers.org.uk/AlzheimersDrugs/index.htm

    - to either email or write a letter to your MP about NICES's decision on Dementia Drugs.

    I've also come across another link, which is campaigning for the same thing, to go to the 10 Downing Street website:
    http://petitions.pm.gov.uk/alzheimerdrugs

    So far over 2,365 people have signed this petition and the deadline is 10th January 2008.

    Please do have a look at these links and help this good cause, as this disease has affected so many of us.

    Many thanks for viewing this post.

    Pat.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,892
    Kent
    Welcome to TP Pat.

    I`m glad you`ve discovered this site too, as it`s a wealth of information and support.

    I will sign the petition, although from previous experience I have little knowledge of the success of any.

    But there`s always a first time. :)
     
  3. Pat1066

    Pat1066 Registered User

    Sep 25, 2007
    17
    London
    We have to keep on trying. Would you believe Repeal the Hunting Act 2004 has over 42,000 signatures, and something as important as NICE's decision on Dementia Drugs has only just over 2,320.


     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,892
    Kent
    I did sign the petition, but didn`t get the email to verify it, so must assume I`ve already signed it.
    I do sign them all, unless I`m in disagreement with the principle, but have never yet signed a successful one.
    To those like you who keep trying, my deepest respect.
     
  5. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    I too have signed but didn't get the email to verify, (maybe Downing St is asleep at this time of night:) ). Another thing struck me whilst reading the petition, so many,many lives touched by this awful disease:( it's so sad.
     
  6. Pat1066

    Pat1066 Registered User

    Sep 25, 2007
    17
    London
    Hi May :)

    Thanks for signing the petition. Like you said, so many lives has been affected by this horrible disease. Saw my Dad on Sunday (who has AD), he has his good and bad days. I know that if the roles were reversed and I had a terrible disease, he would do everthing in his power to help me too.

    Pat.

     
  7. Pat1066

    Pat1066 Registered User

    Sep 25, 2007
    17
    London
    Hi May :)

    Please do try again to get the email to verify it.

    Thanks Pat.

     
  8. nemesisis

    nemesisis Registered User

    May 25, 2006
    100
    thanks pat

    was unaware about latest campaign untill I read your post so immediately sighned and confirmed email and emailed the rest of my family to do the same
    my mum always said to me that that the motto of the NHS was
    "TREATMENT WITHOUT PREJUDICE" its not like that now its more like (is it cost effective) as well as my mum (75) suffering with Alzheimers my aunt (77) is also struggling with Macular Degeneration and risks going blind she has been told by her gp (on the qt) that her best chance is paying for private treatment
    in other words if you are retired forget it they dont want to treat you
    feel free to correct me if you think I am wrong
     
  9. Pat1066

    Pat1066 Registered User

    Sep 25, 2007
    17
    London
    Hi Nemesis :)

    I too was unaware of this E-petiton, I just happened to see it on a forum message board, so I knew I had to let other people know about it. I also immediately signed it and also let my family and friends know about it. I just hope the Govt will do something about it.

    Sorry to hear about your Mum and Aunt (they are about the same age as my Father). I totally agree with you.

    Pat.

     
  10. nemesisis

    nemesisis Registered User

    May 25, 2006
    100
    ta pat

    my family have all signed today so another 16 votes
    to quote "every stone thrown sends out ripples"
    lets hope so
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I'm guessing I signed it when it first came out because when I did so yesterday there was not e-mail in response.

    I've signed a number of the petitions on the Downing Street site, but in reality, I believe it to be a totally spurious activity.

    The top one Allow the Red Arrows to Fly at the 2012 Olympics, while nice, is totally irrelevant to anything.

    9th in the list is Make Jeremy Clarkson Prime Minister. While I might really agree with that, is it relevant to anything?

    The petition in question is way, way down the list. Perhaps people who are carers have something better to do with their time than visit this site. All responses I have received from the site when petitions have expired have simply re-stated the government's case, with the petition having no effect whatever.

    By the way, I'm not saying the cause is not massively relevant, and that time spent voting on it not absolutely critical. I just think the Downing Street site is another form of social website in the eyes of those who run it. At least with Facebook you have pictures...

    Ah well.
     
  12. Pat1066

    Pat1066 Registered User

    Sep 25, 2007
    17
    London
    Hi Nemesis :)

    When you all sign the petition, you need to use different email addresses, also you need an email veryfying your signature, or it won't count.

    Thanks

    Pat.

     
  13. nemesisis

    nemesisis Registered User

    May 25, 2006
    100
    pat

    my husband in one of eight and I currently have 24 nieces and nephews not counting my own (small) family they are all (apart from the last three) living their own lives and are now having their own familys so dont worry they all have a different email address's - thats how I let them know (bless) without email I bet I would not have as much contact with them all as I do and they have all been a great support to us
     
  14. nemesisis

    nemesisis Registered User

    May 25, 2006
    100
    I would also like to add after reading brucies post that when I signed I had an email straight back asking me to confirm (signature) and this was also the case with my brother I checked when I spoke to him
     
  15. nemesisis

    nemesisis Registered User

    May 25, 2006
    100
    just adding for a laugh when I said I currently had 24 nieces and nephews that was because one of my brothers in law was 49 before he got married and had the the last two and we are still waiting for for the last brother who is 45 to settle down so there may be more lol
     
  16. spoiler

    spoiler Registered User

    Sorry to say, I like some others belive petitions to be a waste of time, but they do make you aware, so when you find one you really think needs some action don't signe it, instead write to your MP. 2000 names on a list deliverd to No 10 waste of time,
    2000 letters falling on MP's desks soon get noticed & atract attention and meybe even talked about
    Tell them your not happy with the govenment, not happy the way they treat people with Alzheimers, Not happy with their decisions to withhold drugs from sufferers in the early stages of dementia, the times it is needed most, tell them how much better you think under a differant party. (I dont belive that but they might)

    Petitions sorry no,, Letters yes :)

    Jon
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,892
    Kent
    Good idea Jon, will certainly do. :)
     
  18. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Petitions - Letters to Powers that be !!!

    I have down the letters, petitions to support where ever I can for Alzheimer's.
    One letter to my local M.P. and back came a two page letter informing me that she had more important things to raise in Parliament that the drug. I was livid and copied the letter for our A.S. local Branch. This M.P. use to be a Doctor ???
    Therefore, the votes in the local elections for this person went down. So in my personal experience through the ballot box is the only way we can get what our loved ones deserve.
    Christine
     
  19. spoiler

    spoiler Registered User

    Hello Christine,

    L bet you were bouncing, I would have been. I would have written back condeming her response, stateing that you were sending a copy of your original letter and her reply to the PM asking for a proper answer & an apology

    Did she understand Why her vote count was down at the election,

    But just think, if your one letter had been followed by 10, 20 or 50 others, I bet your letter would have read a lot different
    and if the same occured on all the other desks in all the other offices, |||| Acorns & Big Trees spring to mind :)

    Strange how people suddenly given a bit of power, lose contact with the ideas & the people that voted them into office, thinking they know better what's best for us, even to the point of ignoring what we say & tell them.

    The thing about the ballot box, it's a 5 year turn around, and that far to long for a lot of TP members, So please stick with the letters ,, Does this make sense:confused:

    Regards Jon
     
  20. Pat1066

    Pat1066 Registered User

    Sep 25, 2007
    17
    London
    Website link on dementia drugs has changed.

    Would like to make you aware that:

    The link on dementia drugs has now changed. It is no longer:
    http://www.alzheimers.org.uk/alzheimersdrugs/index.htm

    It is now:
    http://www.politicalwizard.co.uk/ad...hp?category=campaigns&c=i&&campid=574&uid=275

    Regards

    Pat

     

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