richvank

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jan 8, 2011.

  1. simpsons

    simpsons Member

    Richvank

    would it be possible to post this on your advocate part of site please to alert everyone of the campaign please?

    Please Repost Far and Wide!

    NOW IS THE TIME - to say what choices you want for ME.

    The NHS are asking us what choices we want in our health care choices

    Join us in this protest to the NHS choices White Paper Consulttion
    which closes14th Jan

    on StoneBird http://www.stonebird.co.uk/

    Dr Speedy's Nice Guidelines Blogspot
    http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

    This reply to the White Paper has been written by patients for
    patients and is suitable for all levels of severity.

    The discrimination and inequality in the current system is
    unacceptable and a breach of our rights. We call for an end to this
    discrimination, and our right to be involved in the planning of our
    health care services to be honoured and the patient voice heard loud
    and clear

    We hope we have stated the views, concerns and bio medical needs and
    choices we want, not only in diagnosis, but also in treatment and
    social care.

    We as patients feel that the Lightening Process (LP) , Cognitive
    Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) is no choice
    at all. We want equal access to appropriate specialists such as
    neurologists cardiologists, immunologists and a fair diagnosis using
    the Canadian Guidelines, with correct testing and treatment.

    This is the choice we want, not harmful CBT and GET which our shown by
    patient surveys to worsen condition. We condemn the Wessely school and
    their vested interests, and dominance in the NICE guidelines as an
    unfair representation of the facts which leads to discrimination which
    is why they have been declared unfit for purpose.

    The needs of the severely ill are neglected, with no home service
    available often the most in need get the least service. because their
    disability does not allow them to access services.

    We call for equal access for the 25% of patients who are severely ill
    bed and house bound who have no access to choice for ME treatment or
    any other healthcare needs. Correct services need to be provide via
    home visits from all specialists involved in care. Otherwise the
    severely effected will continue to suffer discrimination in accessing
    appropriate bio medical treatments.

    Let your voice be heard loud and clear; the more who reply the
    stronger the message is

    Now published ready for downloading and sending with full instructions in pdf

    on StoneBird http://www.stonebird.co.uk/

    and also on Dr Speedy's Nice Guidelines Blogspot

    http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

    HOW to take part

    - Full instructions are in the links above incuding a sample covering letter

    Download the response document via above links

    Attach it or paste it into to your email

    subject Severe ME choices response

    send it to :

    By email to choiceconsultation@dh.gsi.gov.uk

    cc. us at whitepapermechoices@gmail.com so we can log the response figures


    By post to :
    Choice Team, 11th floor, New King’s Beam House, 22 Upper
    Ground, London SE1 9BW.

    Below is a sample for your email or letter let them know if you have
    made additions, use bold so they can find them easily :

    Dear Sir/Madam

    I submit the following document for inclusion in the white paper consultation,
    I have submitted research links in the document which support this
    submission and ask you not to reach any decision regarding provision
    of choice for ME patients
    without fully exploring this evidence.

    Yours sincerely,

    Please Repost Far and Wide

    thank you
    ME Choices Team!
  2. richvank

    richvank New Member

    Hi, simpsons.

    I posted your message on the Phoenix Rising forum. There are quite a few folks in the UK on that forum. I hope your campaign does some good. Changes in ME treatment are sorely needed.

    Best regards,

    Rich
  3. simpsons

    simpsons Member

    richvank

    thank you thats very kind of you

    yes i hope so too. We have some great replies going in and are really keen to hear from carers also. thank you so much for posting that on for me

    greg has very kindly posted this to co cure for me also.

    now available in word and pdf

    Now is the Time :
    to say what choices you want.


    Greg Crowhurst
    Jan 10th 2011


    PLEASE REPOST WIDELY


    The Government's White Paper, Equity and Excellence: liberating the NHS sets out proposals which envisage a presumption of greater choice and control over care and treatment, choice of treatment and healthcare provider becoming the reality in the vast majority of NHS-funded services by no later than 2013/14.


    In other words this is a rare opportunity for people with ME to give an account of what choices they want to have.

    Stonebird is proud to have been a participant in drafting “Now is the Time , to say what Choices you want” , a comprehensive reply to the White Paper , “written by patients for patients”, especially people with Severe ME.

    "Now is the Time" asserts the views concerns , bio medical needs and choices that people with ME want , not only in diagnosis, but right across the board, including treatment, and social care.

    "Now is the Time", gives voice to all those who find that :

    “The discrimination and inequality in the current system is unacceptable and a breach of our rights. We call for an end to this discrimination, and our right to be involved in the planning of our health care services to be honoured and the patient voice heard loud and clear.”

    Urgent : replies to the Government White Paper need to be in this week. There is still time to respond ! We urge you : “Let your voice be heard loud and clear the more who reply the stronger the message is.”

    How To Take Part


    Download the response document "NOW IS THE TIME" from Stonebird :


    www.stonebird.co.uk/Now is the time.doc


    Attach it or paste it into to your email


    subject : Severe ME choices response


    send it to : choiceconsultation@dh.gsi.gov.uk


    cc. us at whitepapermechoices@gmail.com so we can log the response figures


    "Now is the Time " can also be downloaded from Stonebird in PDF format : http://www.stonebird.co.uk/now1.pdf