1. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    For me the NICE decision is the last straw.
    Do we really live in a democracy?
    We have gone to war against the wishes of many many people,we now have sufferers of AD refused drugs, again against the wishes of many many people.
    What recourse do we have?
    Only one that I can think of,the ballot box,and I for one will remember this day 11/09/06 when next I vote.
    This is a non-political cry on behalf of AD suferers so please do not let us get into a political argument.
    You would probably be suprised if you if you knew to which political party I have belonged to for many years,but not for much longer.
    The goverment do not have to accept the decision of NICE,perhaps they won't.
    Was that a pig which just flew past my window??
    Norman:mad: :mad: :mad:
  2. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    I know what you mean Norman.

    I have sent off so many letters and e-mails lately, I think I might wear my keyboard out.

    No positive responses at all, of course, but at least I feel I have tried to make myself heard.

    There was that article about not calling the elderly sweetheart etc as it is not showing respect............what respect is shown to sufferers when they are forced to use their hard-earned savings and then sell their homes to pay someone to clean them up and feed them!!


  3. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    I am with you totally Norman. The trouble is I am so worn out mentally and physically with 'caring' that everything else becomes a burden and hard to handle. I am so lucky to be in the pre 'NICE' argument and at least David is on Aricept. I cannot believe the NICE decision - they just need to live with it - perhaps with several sufferers to see the difference in each case.
    I agree the ballot box is the only way we can denouce the decisions - I just hope the other party will think differently - WHO KNOWS!!!!!!! An opposition prospective MP lives just down the road from me - will he listen - GOD KNOWS Keeping chins up Beckyjan
  4. susie

    susie Registered User

    Nov 30, 2003
    Hello Norman
    I thoroughly agree with you. I was on local radio being Mrs Angry about the decision. Wht incensed me was one of the "Nice" officials saying that there isn't enough improvement in the early stages!! What are we ? A country of results -illness equals tablet equals improvement statistics! I said the NICE men /women should come and look after our loved ones in the early stages to watch the improvement when tablets are prescribed. I know they were a lifesaver for my husband. Another boffin said that they had to make sure the money was being spent equally on all illnesses but as usual mental health is pushed to the back of the queue!!!!!!!
    We all get very tired with caring but we have to keep fighting.
    Susie (Mrs Angry)
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Alzheimers isn't classed as a mental illness is it?

    I thought the brain dying at an accelerated rate was a physical disease, or am I mistaken.

  6. daughter

    daughter Registered User

    Mar 16, 2005
    That's interesting, Kathleen, I hadn't thought about this before - just assumed it was a mental illness because it affects the brain so I had a quick google (they can't touch you for it!):

    "Most diseases of the brain, such as encephalitis and epilepsy, are classified as diseases of the nervous system. Others, like the postencephalitic and postconcussional syndromes, are classified as mental disorders. Some, like Alzheimer's and Parkinson's diseases, are listed as diseases of the nervous system and also, if they lead to dementia (as Alzheimer's disease, of course, invariably does), as mental diseases."

    So I guess it's a yes and a no. :confused:

    P.S. I can't say anything nice about NICE so will refrain from comment! :p
  7. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    #7 KenC, Oct 11, 2006
    Last edited: Oct 11, 2006

    Hi Everyone

    I really could not understand the NICE decision at all. I have been on Exelon for the last two and a half years and I have got my life back, or as my wife said today when speaking to a reporter, (She had got her husband, the man she married 30 years ago back). I knew I had been ill but that shook me when she said it. Nobody has the right to stop us getting this medication or even trying it to see if it works. Some people will never know at all until it is too late.
    They obviously do not know anything about the illness and did not take into consideration that people on the medication are on the whole better than they were before.
    Admittedly these drugs do not work on everyone, but neither do other drugs on the market. I have spoken to a lot of people whose lives have improved since they went on to the medication and they all say that things are a lot better.
    Surely NICE should be made to consult those on the medication, their carers and Consultants, instead of taking rash decisions about something they have little or no knowledge about.
    I suppose we are now back to the drawing board again, and start doing demonstrations outside parliament again.
    A reporter said today that he was convinced that NICE was set up to take the heat off the government and I really wondered if it were true.

  8. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Disappointed ...... !!

    I nearly crashed the car this morning when I heard the line "Alzheimer Sufferers and Carers will be disappointed today ......" DISAPPOINTED ......Norman, you must have heard me yelling for miles around. Appalled, disgusted, speechless - I so wish I had had time to ring the radio station, but perhaps I saved myself a great deal of embarrassment, as I was so hopping mad. All the letters to MPs, newspapers, NICE, what can we do now?
    I have to admit that I caught myself wishing all the clever bods responsible for this unjust decision that they may, at some point, have to experience the result of this decision themselves - :mad:
  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I agree.
    I have written everywhere,been on TV, worn out caring and trying.
    We wait now, and I think we have to be guided by AS.
    I for one will not give up.
    Good luck
    Norman:mad: :confused:
  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Count me in! I've just heard on the news that SIGN, the Scottish equivalent of NICE, is likely to follow the NICE guidelines, having said just a few months ago that they wouldn't.

    It's just unbelievable. How can they get away with it?

  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m very nervous about submitting this Post in case I cause offence, but I just need to test the waters and would appreciate your comments. If I offend anyone, please accept my apologies in advance.

    The decision by NICE re. Aricept, Reminyl and Exelon, has angered and upset the majority of people affected by AD.

    Has any Study been made, giving statistics showing the percentage of sufferers who have benefitted from these drugs, and those who have not. For those who do benefit, by how long are they delaying the inevitable.

    I do believe, we should have Choice, and the Choice has been denied to us. But from personal experience, I don`t believe these drugs are the panacea everyone believes them to be.

    Please correct me if I`m wrong.

  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Sylvia, I don't think anyone believes that they're a universal panacea (well, I don't) - in fact you only have to look on the boards to find people reporting that for certain people, these drugs either have no effect, or have quite bad side effects. Studies have been done (I would imagine that that is what NICE has based it's opnion on, at least in part). The trouble is, there is not a set progression to AD, so it's almost impossible to assess what effect any medication may have, You can't say, for example "After 5 years an unmedicated AD sufferer would be here, and a medicated one would be here". There is definitely anecdotal information regarding the fast deterioration of AD patients who are taken off these drugs, but it's just anecdotal.

    But as you say, there's no way to know up front whether one person would benefit or not. Now, those people won't get a chance to find out. I think of it as similar to diabetes. Lots of people have diabetes, or at least incipient diabetes, that can be modified by diet. If that doesn't work, they might be prescribed other medication to smooth out blood sugar levels. Only when that doesn't, or no longer works do you start receiving injected insulin. What they don't do is say - OK you've got incipient diabetes, eat yourself silly until your pancreas shuts down completely and you go into a diabetic coma, then you can have the insulin. The analogy might not be exact, but perhaps you can see where I'm going.

    In the final analysis, when NICE says they "don't make enough of a difference" it's really a slap in the face to a group of people for whom even a slight difference could mean the difference between coping and not. (Sorry, too many "differences" in that sentence.)

    I do feel that, even if very few people are helped by these drugs, there is no reason why every possible candidate couldn't be given a trial run - if they had no effect, then they could be stopped, if they had a positive effect, they could be continued.

    Just my opinion, and it's not as if these drugs would be prescribed for my Mother anyway, as she has had strokes.

  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I think the situation regarding these medications is quite complex. Stating the obvious, of course.

    But I believe strongly in giving the benefit of the doubt, rather than not.

    We tried Jan on Aricept and Reminyl and neither appeared to help her. Indeed, I withdrew them from her myself as they had adverse effects. One criticism I have is that I was left alone to judge this. The pills were dispensed [okay, I did have to threaten my own suicide to get them - I said that if I didn't feel that everything possible had been done to try to help Jan, I would find life unbearable], but there was no follow-up.

    We tried them, they didn't work. Cost to NHS, minimal. Bruce satisfied that everything had been tried. Jan no worse off.

    My own feeling was that Jan was too advanced in her condition when she tried them, and she was in the early mid stages then. Earlier, she might have had benefit.

    The effect of not enabling dementia patients to test these medications is compounded across families then. Also, with early onset people, it can prolong the time that a spouse can work before having to quit to care for their loved one. With older people, it gives them the possibility of a benefit in having a longer meaningful time together.

    The problem with organisations like Nice is that they use worst case scenarios. They assume everyone possible will use the medications, and then multiply up the costs. They don't look at individual cases and check out the overall benefits - the holistic approach.

    I feel at ease, 15 years on from the start of Jan's troubles because we were able to try the drugs. That is priceless, and the fact they didn't actually work is not an issue. she had the chance. I had the chance.
  14. Helena

    Helena Registered User

    May 24, 2006
    As my Mother has Vascular Dementia the NICE decision on drugs does not enter my fray .............and i do have to question the cost of the drugs to the NHS versus the benefits but equally can see the unfairness when HIV/Aids sufferers get unrestricted supplies to far more expensive drugs

    I also believe that the drugs industry is so twisted and corrupt that even if there was a cure for anything tommorow theres no way they would let it on the market because the only way they make money is to peddle drugs that treat or mask the symptoms not the cause

    I have my own reasons for believing that Alzheimers is actually preventable but science will never confirm it because big business holds sway

    Yes I am a total cynic and refuse to take any allopathic drugs or touch many of the so called convienience foods and their packaging

    When it comes to any kind of Dementia sufferer being robbed of their home and savings when they have paid their dues all their lives I will campaign long and hard and will be doing plenty of table banging and shouting soon over it

    If this government put all the money spent on AD drugs , wars etc etc towards the cost of care then we all might feel happier

    Cancer patients , HIV/Aids patients, Parkinsons and other incurable illnesses etc are not robbed of home or savings yet the end result of the diseases is the same

    So why are Dementia patients treated so wrongly
  15. Jodie Lucas

    Jodie Lucas Registered User

    Dec 3, 2005
    disgust at NICE decison

    Hi everyone,

    Just wanted to add my feelings of disgust to the NICE decison. John Humphries was talking to someone from nice and the psychiatrist who gave a great talk at the march in london a few months ago (his names escaped me). Anyway the psychiatrist pointed out that there have been 30 clinical trials that have shown that people in the early stages of dementia do benefit from these drugs. And another thing 4 of the members of the appeal panel were from nice itself!!

    Where's the integrity? Shouldn't the appeal be independant in order to rule out bias!?:mad: :mad:

  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Thank you, Jennifer, Brucie, Helena and Jodie, for responding.

    I was interested to note, Jodie , there had been 30 clinical trials.

    I totally agree we should have the opportunity to try these drugs, in the hope they may be effective. Not being given this opportunity, causes resentment, and we have enough on our plates without feeling resentful about lack of support, or that our AD sufferers aren`t important.

    It is also hurtful to know drugs like Viagra and HIV/Aids medication are readily available. Not that I think they shouldn`t be, but who decides the selection.

    I remember when Aricept was prescribed for my husband. The word Alzheimers wasn`t mentioned, we were just told his scan had shown significant shrinkage. It was only when I got home, phoned our son and heard his sharp intake of breath, that the horror hit home. I was so grateful for this drug. Unfortunately, the side effects were immediate and horrendous. Hallucinations, seeing people, hearing human and animal noises in the house, alienation from me, it was a nightmare. I phoned the doctor and was told to stop it. He was then prescribed Reminyl with the same results. Nevertheless, at least he was given the chance. It was just sad the drugs didn`t work, but we had nothing to be angry about.

    Our son went to see the Consultant, and we all agreed, no more trials. My husband agreed too.

    Now he is calmer, less resentful and coping, with anti-depressants only. I try to keep him as stimulated as possible, try not to let him withdraw into himself and we will have to live for each day.

    Take care everyone. Sylvia
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    If only NICE and SIGN could read this thread. TPers are so sensible, and we do know what we're talking about it. We're not saying the drugs work for everyone, but they do work for many, including my husband, and many of his friends in our support group. We don't want the drugs to be prescribed where they're not helping, or are having side-effects.

    All we're asking is that everyone be given the chance. John and I have had six years of quality life, that we might not otherwise have had, and I'm so grateful for that.

  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    #18 Margarita, Oct 12, 2006
    Last edited: Oct 12, 2006
    I did not hear a mention on Ebixa menantine

    If they can put a stop to Aricept, Exelon, Reminyl , there no hope in getting Exbixa Menatine .

    My mother was never offered Aricept, Exelon, Reminyl , so must of been in the late stages of AZ when I was given Menantine .

    Lucky for my mother, yes its only the care that know what the improvement is:- from eyes fix looking into space , incontinent both ends wondering the streets lost . Not talking for days on end, extremely anger temper due to confusion.

    Now my mother take an interest in her appearances, put lips stick on herself brushes her teeth. Likes her hair done , go to the loo herself . Talks to me all the time about what happen in daycentre and what she wants to wear tomorrow.

    I new something was wrong with my mother, but in this country, they just say mum was going mad my mother old doctor told me that! . I new they would put mum in a mental home, if my mum did not retire to Gibraltar after my father died. My mother would never have got Menantine in this county.

    Why because ones your old you’re not good to the government system no matter what government party rules they all think the same. Even if that NICE man , family gets AZ when older. you know why he does not care if he or his family gets AZ , because he has made so much money anyway he can afford the £1000 a year to treat his family.

    I think they want to do away with the NHS and have a system like in USA .think about it Who care? if the medication is taken away now to this generation of older people( only the carer who are so bog down in caring to fight ) By the time, it hit the working class, middle class of the next generation they have paid all they NI and tax in to the pot and so the circle begins again busy going no where from generation to generation in helping the unerclass hard working person with AZ

    So what message is the government sending out .save £20,000 just in case when your older you get dementia AZ. as AZ can last 20 years 1,000 time 20 is 20,000 ( for medication .

    Wake up call , lets get real hear

    Don’t spend your hard earn money save it for medication, yes they fund your care home that treat dogs better then elderly human . Sorry but had to add that.

    From the new AZ carer party that does not support any political party . Do I stand alone :) yes because we our all to Bog down with careing . I hear you say busy going nowhere :) I know they are not going to take my mother medication away from her. That is not my point

    An Idea is do not send back your Voter registration form lol they can lock (us) me up when I don’t pay the fine for not filling the registration form ......While I chant AZ medication to the press
  19. Lonestray

    Lonestray Registered User

    Aug 3, 2006

    Hi fellow carers, can someone tell me if there was a drug which could have helped my wife's Alz over the past 11 years? Since I came on line in April I find all sorts of medication are percribed. The only medication given to my wife was due to damage caused, either by neglect or igorance. Firstly my wife is, and has always been a very quiet gentle person. When she was admitted to hospital with a broken arm she was given Matazapine without me knowing. In the NH she was given medication for bed sores without my knowledge, and other drugs for her generalized rigidity after I insisted on knowing there purpose. When I removed my wife from the 'home' I was provided with a large bag filled with an assortment of drugs, none of them for AD. I handed the whole lot over to the GP. Once I managed to get her weight back, her general health improved. I saw so much waste in the whole system and it still exists. Then they talk about savings! I often wonder if any of these faceless people think they or their loved are immune from the illness. Like most carers I find it more stressful, seeing and hearing people on TV and Radio rabbit on about the subject than caring for my wife 24/7. Some day if I can find a little extra efford I'll be prepared to wager a bet, of say £100 to these faceless people that they will not last a week doing the same daily tasks as I. I'm sure there would be very few if any takers, once they knew what it intails. God bless Padraig
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    It was so lovely Skye to read your post and to hear that you and John have had 6 years of quality life because of modern AD drugs. It lifted my heart and made me feel less cynical about their benefits. I hope you have another 6 years.

    Margarita, I`m sorry you`re so angry and seem to have had such a bad experience with your mother and her status with Medics.

    As we had bad experiences with Aricept and Reminyl, they work for Skye and John.

    As you had bad experiences with Medics, we have had only kindness and understanding , with the exception of one silly CPN. Our GP has been wonderful. Whenever my husband sees him, he is treated with patience and respect. The same can be said for the Psychiatrists at the EMI Day Hospital.

    I really suppose it`s the luck of the draw. It shouldn`t be, should it. Everyone is entitled to the same standard of care. That is something we must all work towards.

    All the best Sylvia

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