1. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    This is an article that is printed in the Oldham Evening Chronicle tonight. It has a photo of us both but it isn't on the internet version. I thought it might be of interest
    Excellence (NICE) ruled that funding for drugs to treat early stage Alzheimer’s was to be withdrawn, it delivered a crushing blow to the many thousands of Alzheimer’s sufferers and their families whose daily lives are ruled by this debilitating condition.

    Jennifer Hollamby spoke to one woman about the demands of the disease and why it is so important that sufferers are not denied their lifeline.



    AILEEN’S husband Ron had always been one to forget things. Birthdays and anniversaries tended to slip off the radar until he was given a nudge by Aileen.



    But by January, 2001, his forgetfulness had given way to something more alarming.

    Aileen (72), of Chadderton, said: “He was becoming increasingly vague. It wasn’t just forgetting birthdays, it was forgetting all kinds of appointments and not being able to set the clock.

    He was also getting up in the night and wandering around, not knowing where rooms were.”

    Aileen took Ron to his GP, who put Ron’s forgetful episodes down to age and was slow to move to an Alzheimer’s diagnosis.

    Finally in May, 2002, when Ron, then 68, no longer recognised his three children and grand daughter without being prompted, his doctor said he could see a specialist.



    But a nine-month wait was too long for a wife who had been nursing her worst fears for the last 18 months, so Aileen paid £150 to see a private specialist the next day and for the first time, the extent of Ron’s condition became clear.

    “It was really alarming to see that my husband was given a clock and he couldn’t set it and that he couldn’t remember fundamental details of his life, like where he used to live.”

    Television dramas have helped us to cultivate our own impression of a typical Alzheimer’s sufferer — especially “Coronation Street” in which Mike Baldwin was a high-profile sufferer.

    “People remember Mike Baldwin scurrying round the rainy streets in sodden pyjamas, but the reality is that the disease is all the more cruel for its subtle beginnings.

    “It just creeps up on you,” said Aileen. “Ron didn’t know what month it was or what day of the week it was. But it is not like you ever ask your husband what month it is, so it’s really quite hard to ascertain the extent of their confusion in the early stages.

    “It was only when we went to see the specialist that the gravity of the problem became clear.”



    After a few more visits to the specialist, Ron, a former engineering foreman at ICI, was given the drug Aricept on the NHS, but the multitude of forms which Alzheimer’s can take meant that the drug Ebixa did more to clear the fogginess, although Aileen only became aware of it when she read about it in “Reader’s Digest”.

    Aileen said: “When he started on Ebixa the family was beginning to think that he was in freefall.

    “He wasn’t recognising people and he aged years within the space of a couple of months. He was stooping and shuffling his feet.

    “Ebixa was like a Godsend to us, it changedhim. He got his physical demeanour back and started to recognise people again.”

    But, despite its obvious effectiveness, miracles like Ebixa come at a price, and Aileen has had to pay £2.50 a day for a private prescription since Ron started taking the drug in mid 2003.

    “It’s just mind boggling to me that I have to pay for it.

    “ We’re very lucky that we’re in a position to be able to pay, but I’m sure that many aren’t. It is amazing how many people suffer from Alzheimer’s too.

    “I never realised the sheer number until it affected me.

    “I doubt that members of NICE have ever had to care for somebody with Alzheimer’s on a day to day basis.

    “If they had they might realise how life changing these drugs can be.”

    After three years on Ebixa, Ron’s health is in decline again, and he is reaching the stage he was at before he started the medication.

    Since the disease attacked the part of his brain which governs speech, his days are spent largely in silence.

    He likes to watch television, but he gave up his beloved long drives with Aileen long ago when he forgot how to change gear. It is a lonely existence for Aileen too, as some friends have slipped away, awkward and at a loss for what to say in Ron’s company.

    She attends a weekly support group at the Link Centre in Union Street, which she describes as her lifeline.

    She said: “The person I’ve been married to for 47 years isn’t there anymore. I can’t really talk to Ron because he doesn’t understand what I’m saying.

    “The Alzheimer’s is catching up with him again now and I thought Ebixa had run its course. But when I lowered Ron’s dose he deteriorated very quickly.

    It upsets me to think of what would have happened if we hadn’t discovered Ebixa, as it helped him so much.




    Medical opinion



    Local GPs’ spokesman, Dr Kailash Chand said that doctors are still at a loss as to what causes the condition and every Alzheimer’s patient carries their own specific set of symptoms.



    “NICE tries to evaluate clinical effectiveness and value for money and decisions are taken by the whole body.

    “This kind of rationing of drugs will only continue because the NHS doesn’t have infinite funds with which to treat people.

    “That said, once you withdraw that ray of hope the anxiety of families is understandable.

    “NICE leave decisions regarding drugs like herceptin to local authorities and I think that should be the case with the Alzheimer’s drugs. Rather than there being a blanket withdrawal of NHS funding, provision should be put in place for decisions to be made at a local level.”
     
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Well done Mocha

    The more that the real-life effects of Alzheimer's Disease can be put into the public eye, the more understanding there will be out there for both sufferers and carers.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Nice article. Mind you, I don't agree with the doctor quoted at the end - isn't it the NATIONAL Health Service? This breaking things into component parts and making them responsible for contorlling costs may have provided some benefits, but you shouldn't have to move house in order to be in the catchment area of a specific local authority in order to get a drug.
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Thank you for posting the article here Mocha.

    Well done. We need all the publicity we can get. Love
     

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