1. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hi all

    Just seen on the news that Nice have decided to recommend that Alz drugs should NOT continue to be provided, in certain cases, because of cost.:mad:

    Unbelievable!

    So, whilst money is spent on chasing prisoners who have been let out of jail, our loved ones are left in their own prison. It disgusts me.

    The news report stated that charities will appeal. I sincerely hope that with support from carers, professionals and others with a vested interest, they succeed.
     
  2. Katy

    Katy Registered User

    Jul 21, 2004
    1
    Lancs
    NICE are SO wrong

    I have also just heard the news flash about Aricept. What can we do. What about a mass rally Katy
     
  3. Helena

    Helena Registered User

    May 24, 2006
    715
    Many of the decisions from Nice and across the health service seem arbitrary and unfair

    Patients with Hepatitus C which is not caught thru stupidity or unprotected sex etc are denied treatment and face getting liver cancer as a result wheras anyone here or who can walk in from any country with HIV and AIDS which in majority of cases was totally avoidable and be given thousands of £s of drugs and treatment without question .

    I do though have to wonder what the real benefit of some Alzheimers drugs are but then I am looking at a 90 yr old whose quality of life is zero who is hell bent on wrecking others lives through beligerant refusal to co operate in any way
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Age counts.
    Stage counts.
    Condition counts.
    Situation counts.

    trouble in the case at present that the only thing that counts is the accountant....:mad:

    And there is another thing, from the point of view of a carer: even if it may not work, you just don't want to take the chance of not trying it.

    A few months, weeks, days, even hours gained is worth it.

    A carer, and in particular a spouse, can be pushed over the brink themselves if they don't feel they have been able to at least try things that might make the difference.
     
  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I keep thinking, if my mother hadn't been given Aricept she might have been still alive ...

    Lila
     
  6. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    "Age counts.
    Stage counts.
    Condition counts.
    Situation counts"

    Bruce, I couldn't agree more. Particularly poignant having just read your 'highlight of the day'

    Best wishes
     
  7. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    My Mum has been on various drugs, including steroids for her rheumatoid arthritis for over 25 years. I can't help thinking that although drugs may cure or relieve one set of symptoms, they end up creating another set. The steroids helped reduce the inflammation of joints, but then Mum needed pills to protect her stomach from ulcers. These had to be changed after a while because one type could lead to stomach cancer. I think that Mum's Vascular Dementia may well have some connection with all the various drugs she's had to take over the years. She was given Haliperidol to control her hallucinations, but Matron said this was changed because it can sometimes make things a lot worse.
    Our main problem is ignorance and lack of interest among the general public about the causes and types of dementia. We need to get people as interested in dementia as they are about cancer and heart disease. Charities have poured money into research for these conditions and many types of cancer can now be controlled if caught early enough. We must talk about the problems of coping with dementia and not be secretive or embarrassed about saying our relative is in EMI care.
    Old friends, relatives and neighbours just seem to disappear into the woodwork once they realise what is wrong. It is the lack of understanding that makes life hard for us. I don't think there is a magic drug at the moment which will make much difference and sometimes the drugs might make things worse. We need to campaign for more research into dementia and give it a fancy name so we get support from the celebrities and media.
    Quite frankly, the thing which helps my Mum more than anything, so she actually smiles and laughs instead of crying when I go to see her, is being able to stroke one of my dogs. She loves dogs and animals and this really cheers her up.
    I'd also like to see more research into rheumatoid arthritis, which is an extremely painful and disabling disease, although many do not take it very seriously.
     
  8. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Lila

    Lila
    My wife has been taking Aricept for 10/11 Years.I wonder where she would have been without them!!

    Norman
     
  9. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    What can we do?????

    I don't know whether I feel more angry or more sad after hearing and reading about the latest shock decision from "NICE".
    If I had a magic wand, I would need two wishes, not just one: I would eradicate this dreadful disease with one fell swoop, and with the next one, I would give it to every single member on the panel of NICE, and their nearest and dearest! I just cannot believe that anyone, absolutely anyone, could support the decision made today .......
    True, not every drug is right for everyone. But the drugs in question have been proved to be right for many. They don't just help the patients, they are of enormous benefit to the carers and their families. And actually: they even benefit the National Health / Social Services departments, in that they unquestionably allow patients to be able to lead more independent lives and later to be cared for at home instead of needing expensive residential care.
    My heart and my head feel as though they are going to explode with disbelief at this appalling state of affairs. As if the illness in itself was not enough - to then be told by some high-and-mighty *.*.*.* that it does not merit medication which is available at £2.50/day -------- :mad: :mad: :mad: :mad:

    The question is: what can we do that we haven't all done before? Is there any point in writing yet further letters, when previous ones have been so arrogantly ignored? Where can we send these letters? MPs don't seem to have made any difference, NICE is just turning a blind eye and deaf ear. Is there, in fact, any chance that this decision might be overturned?

    I am tired and tearful tonight. I feel as though I've hit a brick wall. I want our life back, but 'want doesn't get' ...... By tomorrow morning I will hopefully have my fighting spirit back. Please, someone, how can we win the next round???
     
  10. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Sorry, I have no answers. Just wanted to send you a hug.
    Love Amy
     
  11. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Come on Nan, not like you to flag.........spirits up sweetheart. WE WILL WIN IN THE END, if not, WHAT THE HELL AM I DOING.

    Love to all, Con.
     
  12. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Daft question

    Strange you should mention 'spirit', Connie (see my reply to your other thread.... i.e. that I have just poured the third ;) ).

    But seriously: this might seem like a dumb question, but will Aricept, Exelon etc. be available privately once the 'ban' from NICE comes into force? And who will judge the criteria for prescription? (I expect it will be GPs, but how will this be monitored?).
     
  13. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Nan, as I see it I don't think prescription for our 'loved' ones will be affected.

    My concerns are for those coming along. I should hate to think people are being denied any form of help.

    Where do we go from here?
     
  14. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Connie, I realise that we are the 'lucky ones' (???), at least in this context: I tried to cheer my daughter up earlier by reminding her that her Dad / my husband has had 5 years on ARICEPT, and since November, EBIXA has definitely given us another 'lease of life' - I just wondered about people who are yet to be hit by the latest NICE decisions.
     
  15. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Nan
    have you read the AS response on the main AS site?
    I cannot believe that NICE can get away with this.
    Pig sick
    Norman:mad:
     
  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Well, yes, of course, they work for some.

    I was glad when it was prescribed, thought now at least someone believes us and is trying to help.

    She probably saw the leaflet enclosed in the packet, read the word "Alzheimer's" and decided to give up.

    Lila

     
  17. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    ebixa

    Nutty Nan,
    Do you have to buy the Ebixa that you say your husband takes. I do and pay about £2.50 a day for it. My Hubby has been taking it now for almost 2 yrs. The trouble is I know he's deteriorating but afraid of stopping the Ebixa wondering what would happen. I did try halfing his dose and he began wandering in the night again.
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    mocha

    My mum on Ebixa mocha we live in London & do not have to pay for it .

    If I was you I would not cut down on the Medication ,
    Once you got it up to 2 tablets 2 times a day, that’s what my mother been on for the last 2 half year .

    why do you want to cut it down anyway ? deteriorating you say
    in what way ? & how many tablets did you give him before you tried cuting it down ?

    I think if you did stop the medication it would be best to tell your doctor First ,so it could be done in hospital , as do you feel you could cope with the side effect of him coming of the medication on your own ?

    I do hope NICE is not stoping Exbixa ,

    Have to read up about it,

    As I know if my mum did not take Exbixa she would trun back to the wondering & being incontinent & not knowing where the toilet is & who I am .

    And if they did stop altogether I am sorry to say this but I would not be able to care for my mother & that would make me very angry & I would go to the paper, the new, the lot .

    We carer have to get angry who the hell does NICE think they are? To stop medication
     
  19. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    Margarita

    Thanks, what I wanted to know was Ebixa available on prescription in different parts of the country. My Hospital trust will not prescribe it free and as NICE won't release it , I wondered how they did it. I buy ours on the internet from London and as I say it costs me about £2-50 a day for 2 tablets. one morning and one night. It was my husband's specialist who said I could try halving it[just because of the expense] but after 2 days I went back to 1 twice a day as he started wandering as I said.
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    REad this http://news.bbc.co.uk/1/hi/health/4307463.stm

    Says final decision in July when the consultation had been finished.

    I think we need to do some more Emailing to NICE ,what does NICE stand for ...............as they don't sound very nice to me ?:mad:
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.