August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

NHS Choices White Paper Consultation

Discussion in 'Action Alerts and Advocacy' started by richvank, Jan 9, 2011.

  1. richvank


    To those in the UK:

    Simpsons, on the ProHealth board, asked me to post the following.


    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

    Dr Speedy's Nice Guidelines Blogspot

    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

    and also on Dr Speedy's Nice Guidelines Blogspot

    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

    cc. us at so we can log the response figures

    By post to :
    Choice Team, 11th floor, New Kings 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. Esther12

    Esther12 Senior Member

    Deadline 14th... I'll try to make time for this before then. Thanks.
  3. Enid

    Enid Senior Member

    Thanks for posting richvank "the NHS asking us what choices we want" Off to pursue - too good to miss !

See more popular forum discussions.

Share This Page