N.i.c.e. Report Conclusions

Discussion in 'Dementia-related news and campaigns' started by Lynne, Jan 23, 2006.

  1. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    "Ban lifted on dementia drugs"
    ( :( but read on - it's not as rosey as it seems, particularly for early stage AD sufferers & their carers)

    Key drugs for people with moderate dementia will continue to be available on the NHS under revised plans unveiled by the treatment watchdog.

    The National Institute for Health and Clinical Excellence (NICE) provoked uproar in March last year when it published draft guidance which stated that drug treatments for Alzheimer's were not cost-effective enough to be available on the NHS.

    The announcement reveals its Appraisal Committee is now recommending three drugs should be "considered as options in the treatment of people with Alzheimer's disease of moderate severity only".

    The news prompted a mixed reaction from drug companies and Alzheimer's support groups, the latter expressing relief at the withdrawal of the "blanket ban", but with concerns it could see treatments denied to people in the early and late stages of dementia.

    Andrew Dillon, NICE Chief Executive and Executive Lead for the appraisal, said: "We are acutely aware of our responsibility to help people with Alzheimer's disease secure access to effective treatment. We needed to make the right decision, based on all the relevant evidence.

    "By going the extra mile and asking the drug companies to delve deeper into their clinical trial data, we have been able to identify the right way to use these medicines.

    "People with Alzheimer's will now receive these drugs when they can help them most.

    "Patients and those who care for them will be able to feel more confident about gaining benefit from them and the NHS will know that it is using its funds to best effect."

    Last year's draft guidance was widely condemned and NICE received an unprecedented response from doctors and campaigners calling for a rethink of its conclusions.

    In the draft, NICE accepted that donepezil, rivastigmine, galantamine and memantine - known as cholinesterase inhibitors - were effective in alleviating the symptoms of Alzheimer's, but were not cost-effective for NHS use.
    ******

    Source: AOL News Service


    And yes, I know I'm repeating this post elsewhere
     
  2. :(

    Well, I put the news on this morning and...

    Well, you can imagine.

    I've nothing really to add at this time regarding this and I'm sure there'll be ongoing issues... so I'm keeping a close eye on it all.

    Here's a link for the NICE Appraisal Document anyhow...
    http://www.nice.org.uk/page.aspx?o=288878
     
  3. Thanks for that Nada...

    I thought:

    What can I do?

    Then after having a good long think about this whole issue, I thought I'd get a letter sent - I hope members of this forum don't mind, but I cited a post from this forum as I felt it would give more credibility to my letter and would hopefully make a strong point.

    I include the email in full here for all to read which I sent to Alana.Miller@nice.nhs.uk
    Feel free to copy & paste any of the information below if it helps and qoute me wherever you like... this took me a long time to type up in order to get my point across - let's hope it has some impact.

    My name is Neil Baxter, I am a Student Nurse soon to qualify as a Mental Health Nurse - and wish to make the following statement re: today's revised decision on Alzheimer's drugs.

    Firstly, as a healthcare professional and a strong supporter and campaigner of the Alzheimer's Society I find it deplorable that the proposal means people newly diagnosed will be denied treatment - I feel that this will directly impact on a person's quality of life... who decides that the person will have to 'get worse' before a treatment is offered?

    Would you deny someone pain relief in order to save money? What if the person were terminally ill - should money be spent in treatment and care if they are going to die any way?

    Obviously the answer will be a resounding no (I hope)... but I can see that NICE's decision will impact on the lives of People with dementia and Carers... again, I have to say it appears the Mental Health, and Older Person's Care get the 'short end of the stick' when it comes to care provision... and yes - I AM aware that the issue isn't just with Older People... but if it were Paediatric treatment I wonder if the outcome would be the same?

    In June last year, as part of my research I contacted members of the Alzheimer's Society official forum to ask members of their experiences re: these drugs - I therefore request that you access the following link:

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=1721

    I have also been in contact with author Christine Bryden, herself a Person with dementia - I informed her that I was a supporter of the 'Hands Off Dementia Drugs' campaign and she kindly allowed me to quote her book in order to highlight the importance of the drug treatments - I cite the following from her:

    "The drugs can stabilise our symptoms for periods of at least six months to a year, and in some cases a lot longer, giving us valuable time at home to enjoy each day while we can still do a great deal. They won’t make us live longer, but may delay our entry into a nursing home."

    Bryden C (2005) Dancing with Dementia: My Story of Living Positively with Dementia London: Jessica Kingsley Publishers.

    I am aware that these examples may be seen to be 'anecdotal' and that your organisation would seem to favour clinical trials - yet I feel that they should be addressed because they are experiences of human beings who should be listened to and respected rather than just a bunch of statistics to be tabulated and stored.

    I therefore feel that the following should be re-addressed:

    I feel that treatment should be available for all - those newly diagnosed, and those in the later stages of dementia who have been receiving the 'Ebixa' medication - I realise that of all the drug types re: this issue that this is the most expensive - but what does money matter when you are talking about maintaining someone's dignity and ensuring they have a chance at a good quality of life?

    For those still receiving treatment (i.e. in the 'moderate' stage of the illness) I wonder if there is any comfort - NICE have already delayed a response on more than one occasion regarding this issue - I for one would be worried about how proposals would affect current treatment plans in light of this - I only hope that NICE keep to their word and ensure that this treatment remains available.

    I look forward to your reply on this issue.

    Regards,

    NEIL BAXTER



    :)

    N.
     
  4. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    #4 Lynne, Jan 23, 2006
    Last edited: Jan 26, 2006
    Thanks for that Neil, I am collecting together facts from a variety of sources and will copy & paste your contribution into it. It is my intention then to cherry-pick from the collection (not quoting directly, as that might infringe copyrights) and put together a letter of my own - WHEN I HAVE COOLED DOWN.

    RIGHT NOW, I just feel like jumping on someone's head, stamping my feet up & down, shouting, screaming, cursing, swearing, crying, and sheer bloody murder.
    What rights or qualifications do the members of this bloody Quango have (& who the hell thought of calling it NICE!) to say that over 70,000 people per year (& their families) must wait & watch AD rot their faculties to the point where they can no longer function on their own or have a reasonable quality of life, and only THEN they can have the available medication to hold them at that level of existence & delay further deterioration for a few years. We don't say to cancer sufferers "well, once the condition has become inoperable you can have some painkillers to see you through the rest of it"!

    For God's sake, It doesn't even make sense economically. Surely someone can see that it is cheaper to give 'holding' medications at an earlier stage, enabling them to stay in their own homes with a reasonable level of FREE support from their family members, rather than have them going into residential care sooner, (because they can't be left safely unsupervised) and then requiring it for longer.

    And please, whilst I'm having this tantrum, can someone let me know what the defined start of "Moderate Symptoms"is/are? Does my Mum have to attack the milkman because she thinks he's an intruder? Does she have to get on the wrong bus and end up lost, perhaps to be mugged in a strange place? Or perhaps after she's drunk bleach instead of lemonade, THEN she can have the medication to slow down her mental deterioration!

    Sorry everybody, I'll stop now - I have to, I can't see the keyboard for tears of rage.
     
  5. Lynne - don't worry about copyright for my stuff though - feel free to use wherever and quote directly if you like - also, send me a p.m. if you want an email address/contact point to forward to whoever in order to address this issue - I don't mind giving out the info. if it will help!

    So you're sat there in tears over the keyboard? I'm truly sorry to hear that...

    I feel like cr*p here... but I'm just absolutely KNACKERED... I hardly slept last night (a touch of insomnia) and today's news didn't help...

    I'm going to go for a couple of hours sleep shortly... but before I did that I decided that I'd post info about this issue EVERYWHERE... I've been doing so on and off all day so far... I've posted everywhere and sent numerous emails!

    As to 'Moderate' - I was asked what the heck that meant on another forum...

    So, I got typing and produced the following:
    Click Here

    Hope this is of use to you - again, anything I produce, feel free to use wherever you like - anything to help.

    Regards!

    N.
     
  6. Righty ho - sent an email as I said, and more or less got a 'standard' reply that doesn't really answer much... just a load of 'bumph'

    But... if you click this:
    http://www.nice.org.uk/article.aspx?o=288878&ifaction_start=contact&frmobj=288826

    You can go through the full Appraisal Consultation Document, answering each Section (maximum 1200 characters) after you've given contact details.

    So... in the interest of doing things 'properly' I have done just that... it takes time folks, but as Nada says - the consultation ends on 13 February 2006 - so best to do it a.s.a.p. I reckon.

    Again - I'm happy for all to see what I've put... and I've been at my 'Research Documents' in order to back up what I'm saying here.

    Here's the info I put:


    Comment on Section 1: Appraisal Committee's preliminary recommendations:

    "No problems - I am aware that it is generally seen to be targetted for A.D. type dementia, and that proper assessment via specialists and use of such as the MMSE should be applied.

    I argue re: Memantine use - those in the later stages of dementia who have been receiving the 'Ebixa' medication - I realise that of all the drug types re: this issue that this is expensive - but what does money matter when you are talking about maintaining someone's dignity and ensuring they have a chance at a good quality of life?"



    Comment on Section 2: Clinical need and practice:

    "2.2 - Loss of ability/behavioural difficulties - I feel withdrawing Ebixa from the NHS completely will be detrimental as research has shown that Ebixa can temporarily slow down the progression of symptoms in people in the middle and later stages of the disease, and it has been suggested that it may slow down the disease process itself.

    Plus: the Alzheimer's Society recognise that it is particularly effective for reducing distressing behavioural symptoms, including aggression and agitation.

    Another issue regards the application of Antipsychotic Medication which may not be applicable - therefore shouldn't this drug still be available on the NHS, but with strict monitoring and review rather than removing it altogether?

    Re: 2.8 - There is a new directive for G.Ps to be rewarded financially for setting up a register and reviewing people with dementia in 2006.2007, surely G.P.s will be more likely to seek training in this area and be more ready to diagnose (see the Audit Commision's "Forget Me Not 2002" report re: doctors not previously having suffient training/reluctant to diagnose dementia early) - therefore, having t available drug treatments to back this up should be paramount"



    Comment on Section 3: The technology:

    "Personal experiences and 'biographies' should be noted regarding this rather than just tabulating clinical trials - In June last year, as part of my research I contacted members of the Alzheimer's Society official forum 'Talking Point' to ask members of their experiences re: these drugs - I therefore request that you access the following link:

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=1721

    I have also been in contact with author Christine Bryden, herself a Person with dementia - I informed her that I was a supporter of the 'Hands Off Dementia Drugs' campaign and she kindly allowed me to quote her book in order to highlight the importance of the drug treatments - I cite the following from her:

    "The drugs can stabilise our symptoms for periods of at least six months to a year, and in some cases a lot longer, giving us valuable time at home to enjoy each day while we can still do a great deal. They won’t make us live longer, but may delay our entry into a nursing home."

    Bryden C (2005) Dancing with Dementia: My Story of Living Positively with Dementia London: Jessica Kingsley Publishers."



    Comment on Section 4: Evidence and Interpretation:

    "Re: Cost Effectiveness... specifically with Memantine:
    Again, other research states there is benefits regarding this medication - yet to cease it's availability will be detrimental to people who are in receipt of it:

    Who would be in a position to pay for EBIXA privately considering the following information taken from the British National Formulary:

    Tablets, f/c, scored, memantine hydrochloride 10 mg, net price 28-tab pack = £34.50, 56-tab pack = £69.01, 112-tab pack = £138.01

    Oral drops, memantine hydrochloride 10 mg/g, net price 50 g = £61.61, 100 g = £123.23

    Now who has that kind of money?

    I feel that to stop this medication is a terrible thing and WILL affect a person's functional ability - can't you access research into 'medication breaks' regarding this (i.e. how someone functions re: it's sudden discontinuation)."



    Comment on Section 5: Proposed recommendations for further research:

    "If I am in a position to do so upon qualifying as a Mental Health Nurse, I will be happy to assist in any way possible in order to research thse drugs (if approved by my Trust) - as you can see from my responses, my care is specifically 'person-centred', however, I fully acknowledge the need for research in order to effectively monitor and develop the best treatment available."



    Comment on Section 6: Preliminary views on the resource impact for the NHS:

    "No comment at this time."



    Comment on Section 7: Proposals for implementation and audit:

    "No comments further - I feel I have answered these sufficiently in prior statements."



    Comment on Section 8: Related guidance:

    "Call me cynical, but I feel that NICE will AGAIN use a delaying tactic in order to 'buy time' before making a decision (or again deciding NOT TO make a decision) - is there any concrete guarantee that the Guidance WILL be in effect from February 2007?"



    Comment on Section 9: Proposed date for review of guidance:

    "I have no issues regarding review - 12 monthly seems to be in order so as to ensure effective monitoring, and to address changes in practice, treatment and technology."


    So there we have it... filled in and sent off.

    A REAL pain doing it I have to say... I feel that I've done essays for University that have been easier - but it's important to get your point across I feel, and hopefully I've done just that.

    Good luck to the rest of you if you do the same - make sure to have plenty fluids to hand and a snack if necessary - it'll take more than a couple of minutes... but hopefully, it WILL be worth it.

    My very best wishes.

    :)

    Neil.
     
  7. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    A Big Thank You

    Neil i feel we owe you a big thank you for all the effort you have put into these posts on behalf of us all. my husband has v a d and has been told he does not need any medication,but i will be asking some more questions about this decision when i get the chance.

    CYNRON.
     

  8. Many thanks for that - it is my pleasure.

    I have an interest in this (obviously) as it's an area I want to work in and have VERY strong feelings about... when I heard the decision this morning, I was nearly in tears over it - seriously... I don't mind admitting that I am passionate about my job and my interests in all this - and I want to help!

    SO I sat and thought:

    "Now Neil... you've all this info... you've read the books/done the assessments/got involved with the A.S. as a Committee Member - now what can you do?"

    The answer?

    Spend most of the day doing my DAMNEDEST to try to highlight the importance of all this!!!

    Today is my 'Study Day' and I'm supposed to be sorting an essay out... but this is more important to me!

    Let's hope it helps...

    Bot positive comments from folk like your good self only confirm that I'm doing the best thing - and I thank you for it!

    My very best wishes to you!

    :)

    N.
     
  9. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Neil, Thanks for this, I am still so angry I couldn't commit words to keyboard the other evening when i went on the NICE site. I've decided to sit down this weekend and tackle it . Your info will make it easier as I still feel like a 'beginner' in this area (so MUCH to read, so little time!). Thanks again
     
  10. No probs. May... and if it will help in any way, here's some of the info. you can access online that may help, as it did with me:

    http://www.dh.gov.uk/PublicationsAn...eArticle/fs/en?CONTENT_ID=4003066&chk=wg3bg0 - National Service Framework For Older People.

    http://www.audit-commission.gov.uk/...038C-464f-8518-441477E92B15/forgetupdate.pdf - Forget Me Not, published in January 2000 - the Audit Commission’s analysis of mental health services for older people in England and Wales.

    http://www.olderpeoplesmentalhealth.csip.org.uk/everybodysbusiness - Older people's mental health is Everybody's Business

    http://www.dh.gov.uk/PublicationsAn...eArticle/fs/en?CONTENT_ID=4123627&chk=JUTZiD - Who cares? Information and support for carers of people with dementia: October 2005 (third revised) edition: This booklet for carers gives information about dementia, caring for someone with dementia and the help available to carers.

    As to being a 'beginner' - whatever your opinions and experiences are will be valid so make sure you have your say!!!

    My best wishes to you May - if I can help in any other way at all, don't hesitate to let me know.

    :)
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Having posted once again to my MP about Nice and its latest money saving scheme, I received the following from the MP
    He was very supportive the first time round, as far as he could be, and I'm pleased that he at least makes mention of families and carers, as this was a major point I made about the impact of crass recommendations.
     
  12. Glad to see you got some input Bruce. :)

    Mine unfortunately never bothered when I emailed him a second time... perhaps he thought the matter 'dealt with' having sent one stamp already.

    Ah well.


    Best wishes.

    :)

    N.
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Reply re: Nice

    I just received a reply from my MP James Arbuthnot, saying
    The reply was
    I leave you to judge how helpful was the reply.
     
  14. Finnian

    Finnian Registered User

    Sep 26, 2005
    60
    U.K.
    Thanks for the info, Bruce. Appreciate your efforts.

    Finnian
     
  15. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Tanks Bruce.
    Typical politicians answer.
    Norman
     
  16. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Snap Bruce, I received a letter from the House of Commons dated 27th February, from James Arbuthnots secretary, enclosing a letter from Jane Kennedy which reads exactly the same as yours!!

    Carol
     
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Oh dear, she is repeating herself. Do you think perhaps she has......
     
  18. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Nada, have just been looking at the details of sending a cheque! Quite a brilliant idea.....

    If it encourages anyone who's 'waivering' on taking any action (not that I think that will apply to many here!) just wanted to let you know I recently got into a campaign on a children's issue.... the charity behind it asked me to send a pre-printed postcard to my own MP and the appropriate minister... confess to being a bit sceptical but for the price of a stamp and all that.... AMAZED and delighted to receive a personal letter from my own MP detailing what action she is taking to investigate .... etc... and I know the charity involved is confident that they will secure yet another 'success' in this way.....

    These campaigns really CAN work!!!

    Best wishes, Karen (TF)
     
  19. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    A recent example, HERCEPTIN (which costs a great deal more than £2.50 a day) because a few courageous individuals took it to court.
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I phone my MP's office yesterday ,But no one answered so left message & my phone number ,they still have not got back to me :rolleyes: someone not geting my vote I can tell you that .

    I still keep ring :) & leaveing message
     

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