1. capybara

    capybara Registered User

    Jan 10, 2007
    32
    #1 capybara, Mar 19, 2007
    Last edited: Mar 19, 2007
    :) Was sent this article today may be of some help to you.



    http://www.bps.org.uk/media-centre/press-releases/releases$/psige-section/computer-aid-helps-dementia-sufferers-communicate-again.cfm
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Capybara, was not able to find the link you mentioned.

    Maybe something I am doing wrong. However, how are you? Please let us know how your journey is progressing?

    (Well if it isn't a journey, I don't know what is)
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Connie

    I've tried to post the link again, but it doesn't seem to work. However, if you copy it and paste it into the URL bar you can get through.

    Love,
     
  4. capybara

    capybara Registered User

    Jan 10, 2007
    32
    My Journey so far

    Hello Connie I realise now that the link I posted was a bit out of date never mind and thank you hazel for the copy and paste into the browser info ( Info I should have put in the message).
    The petition is going well 1,554 votes and the story below is going to be published on the NHS Exposed website in the next few days. Hope the A.S don,t object to the link to their campaign page.
    ;)
    http://www.nhsexposed.com/


    Been to see Dad recently as we live 200 miles from him. Took him out and he and us enjoyed ourselves, breaks my heart to leave him though.
    I will keep you posted on events and thanks for all the support
    ................................................................................................................................

    My father joined the Royal Engineers as an 18 year old boy; during his service he rose through the ranks was eventually offered a commission and retired at the age of 55 as a Major M.B.E.

    During his service he had many postings, India, Egypt, Malaya, Kenya, Northern Ireland and Nepal being just a few of them.

    Four years ago my wife and I decided to move to North Lincolnshire for a quieter life and a better house. At that time all was well with my Father and Mother.

    On his first visit to us in his car he got lost and I had to go and direct him to our house, this was the first indication that all was not right. As he had never had problems finding places before and I had given him detailed instructions.

    In the following months his mental state gradually deteriorated, he lost interest in reading, watching the television and even gave up his woodturning hobby eventually he also gave up driving altogether.

    His G.P. eventually referred him to see a Psychiatric consultant within the Medway NHS Trust. He underwent an CAT scan which my wife and I paid to have done privately as he would have had to have waited months for the NHS to carry it out and he also underwent an MRI scan which was carried out by the NHS.

    He was getting very agitated by now and was also showing some aggression to my mother, so his consultant prescribed him Quietapine for his agitation.

    After his scan results came back he was diagnosed with Alzheimer’s but he was never offered any of the drugs available e.g. Aricept to treat his symptoms by the Consultant.

    My mother who is 83 was caring for him at this stage and it was becoming an increasing strain on her. She became unwell and her GP had her admitted into Medway hospital.

    With nobody able to care for my father at home he came to stay with us while my mother recovered in hospital. He was fine for the first night with us but on the second and third nights he was having problems with his orientation as regards the toilet and I was not sleeping with the worry of him.

    The whole family consulted and it was decided that we would put him into a local Nursing Home for respite care until Mum came home from hospital. A decision which broke my heart at the time it was the hardest thing I have ever had to do.

    My mother was diagnosed with an enlarged heart problem and we realised that the strain of looking after my father was not going to help her situation so we got in touch with Kent social Services. They carried out an assessment on my father on his return after also assessing my mother before leaving hospital.

    My father went into short term private respite in Medway before eventually being found a permanent place in a care home in Gillingham Kent where he now gets the 24/7 care he needs .

    The care home inform me that only one patient of theirs with Alzheimer’s disease is on medication for the symptoms and although my father has been reviewed by his GP he has never been referred back to the Psychiatric clinic for any effective treatment of his symptoms and just stays on his Quietapine despite our attempts to get him better treatment.

    It angers me to have had to watch his mental decline knowing that there are treatments available but that Alzheimer’s drugs for early and late stage patients have been deemed too expensive at a cost of £2.50 a day by NICE (National Institute for Clinical excellence) and not cost effective.

    Because of my Fathers predicament I have become a supporter of the Alzheimer’s society, who are campaigning .for access to Alzheimer’s drugs for early and late stage patients.

    The Alzheimer’s Society has expressed its disgust at the NICE appeal panel’s rejection of the Alzheimer’s Society’s appeal on access to Alzheimer’s drugs.

    The panel have decided not to change the original guidance of the Appraisal Committee, stating that Alzheimer’s drugs should only be given to people in the ‘moderate’ stages of the disease, and not in the early or later stages.

    Thanks to the ruling in November 2006, many people in the early and later stages of Alzheimer’s disease are likely to be refused treatment. This decision could affect the lives of hundreds of thousands of people, as one in five of us will probably develop dementia at some point in our lives.

    The Alzheimer’s Society has decided to take part in a Judicial Review to challenge NICE in the High Court and have had support from the Media and are actively campaigning to raise funds for the fight. Link below

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

    I have also set up a petition on the number 10 website and would be very grateful for your support. Link below

    http://petitions.pm.gov.uk/alzheimerdrugs/
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I just sigh it :)
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    I have signed it too.
     
  7. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    Count me in aswell.

    Damned disgraceful that people are denied drugs that are readily available!

    Gill
    XX
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    I'v signed. Lionel was one of the lucky ones. He has always had the drugs.
    It is all wrong this system. Good luck with the petetion.

    Thank you for telling us your dad's story.
     
  9. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi

    I've signed, but I really don't know if I've signed this already.

    I agree with all the petitions concerning AD, and the elderly, I lose track of what I've signed already and what I haven't.

    Alfjess
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I've tried twice -- both times I got a message to say I'd get an email to confirm my vote, but I didn't get the email either time. I think that probably means I've signed already from another thread.
     
  11. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Skye

    This is what I meant.

    I didn't receive an email either, so I assumed I'd already signed.

    Alfjess
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    Hi Hazel and Alfjess,
    You must have signed before because I got the email with no trouble.
    With love
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    one can actually view all people who have signed on the site. ask for a full list on screen then CTRL-F to search for yours.

    I think.
     
  14. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    I've signed and forwarded it to friends and relatives to sign.
    cris
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Thanks, Bruce. Yes, it works, and I'd already signed.

    Glad we've got you for the techie bits --- as well as Moderator-in-Chief!
     

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