please pass this on to people with in ME in Norfolk (UK)

Discussion in 'Fibromyalgia Main Forum' started by tansy, Dec 13, 2008.

  1. tansy

    tansy New Member

    Norfolk (UK) NHS ME/CFS Services: Important Meeting.

    To all Norfolk (UK) ME/CFS patients and carers,

    I have just (16.22pm, 12 December 2008) received the following email
    (see below) from Sarah Vero, the research assistant to Dr Ian Gibson MP
    (MP for Norwich North). There is apparently to be an important open
    meeting of Norfolk NHS Primary Care Trust late in January 2009 to
    discuss the future of Norfolk ME/CFS (or 'CFS/ME'?) services. I do not
    yet know the date, time or venue but when I will do I will post the
    details on the internet time and health permitting.

    It would have been better in my view if a service framework was not to
    be pre-proposed by the PCT in this way with wider patient comment only
    invited post-proposal. Nevertheless, it is very important that as many
    patients and carers as possible attend the proposed meeting and make
    their views firmly known and at least attempt to constructively engage
    with local NHS managers. As I understand matters, proposals for NHS
    Norfolk may not necessarily be tied to the therapist-led clinic for
    Norfolk & Suffolk combined that is provided by the Great Yarmouth &
    Waveney PCT (what's left of Dr Terry Mitchell's old clinic). Indeed, I
    shall be strongly arguing that they should NOT be constructed around
    this parochial backwater PCT and that a separate and full BIOMEDICAL
    consultant-led service be provided for ME patients at the bigger Norfolk
    & Norwich University Teaching Hospital by Norfolk PCT itself. Such a
    service could then admit patients from within and outside of Norfolk. I
    will be arguing that the service be led jointly by two respected
    consultants that have a long-standing record working to show that ME has
    a biomedical aetiology and requires biomedical treatments.

    In my view we need a good turnout to this meeting and it needs to be
    politely made clear to NHS managers that ME patients will not only
    boycott anything less than a full and properly staffed science-based
    biomedical clinic, but will attempt to redress matters in the courts if
    this is not forthcoming. Put simply, ME patients and carers have paid
    for a proper local NHS service through their taxes and National
    Insurance contributions and if the neglect and mistreatment we have to
    put up with was done to Parkinsons or MS patients and the like there
    would be a national outcry.

    Please pass this message on to as many ME patients and carers in Norfolk
    as possible.

    Please note that as I am an ME patient myself and have my hands full
    with JR legal matters presently it is impossible for me to take email
    and telephone enquiries on this matter or debate it at length on the

    Best wishes,

    Kev Short
    Anglia ME Action.
    [Permission to repost]


    Dr Gibson and Norman Lamb met with Dr Bryan Heap at NHS Norfolk this
    morning. The purpose of the meeting was to discuss service provision for
    ME patients in Norfolk.

    Dr Gibson has asked me to let you know that as a result of the meeting
    the PCT has agreed to go away and come up with a proposed service
    framework. The aim of this new framework will be to replace the role
    previously played by Dr Mitchell.

    The PCT will report back late January and then there will be an open
    meeting held to discuss their proposals. All patients and patients,
    carers and patient groups can attend this meeting.

    Best Wishes


    Sarah Vero

    Researcher to Dr Ian Gibson
    MP for Norwich North