The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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legal/treatment impications of having PHYSIOLOGICAL diagnosis of m.e/pvfs pre NICE UK

Discussion in 'General ME/CFS News' started by stevenski, Apr 29, 2011.

  1. stevenski

    stevenski Guest

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    I was diagnosed as having post viral fatigue syndreome (pvfs) by A NEUROLOGIST in 1989, then again as having m.e in about 1994(in the "Infectious Diseases Unit" of the local hospital), both diagnoses being BEFORE the introduction of the NICE clinical guidelines on treatment/ management of m.e/cfs/pvfs(?) in UK. Does anyone know whether this has impications for the range of test/treatment options the NHS in the UK,via GPs, "cfs clinics" and other specialist clinics(eg immunological, infectious diseases, neurological)- eg viral testing, eg Epstein-Barr, xrmv(these are only examples)are legally obliged to give, if that particular test is requested; and therefore provision of antiviral drugs; i have usually had borderline low(eg 3.9/3.4)overall white blood cell counts; and, once, borderline neutropaenia(slightly low neutrophils)which may indicate evidence of a persisitent virus/viruses.I cannot find anything on the web on this legal issue, though i know that individual NHS UK GPs have, at least, SOME discretion in provision of (usually symptomatic relief only) treatment. Thanks Steve(Stevenski)
     
  2. Graham

    Graham Senior Moment

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    Sussex, UK
    Hi Steve

    I don't know anything about the legal situation (in fact these days I don't think I know much about anything!) but when I had PMR, which is where the arteries and veins get inflamed mimicking an infection, my white blood cell counts shot up (16 and 12). I thought that low white blood cell counts meant that your body was open to infection, rather than fighting a persistent one. Have I misunderstood that?
     
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Past diagnosis (unless it was negligently given) has no bearing on current treatment. Unless you are currently on the lists of the Specialists you saw in 89 and 94, then at some point you would have been formally discharged 'back to your GP' who would have the responsibility for any ongoing care/treatment. If you believe that you have some untreated illness which has not been addressed then you need to ask your GP for further assessment (IMO every M.E/CFS patient should have a full battery of exclusionary tests done at least every ten years to rule out anything that may be being masked by M.E/CFS symptoms) however unless you can show new symptoms or persuade your GP that there was something you should have been tested for in the past but were not, then you may not have much success. Still if you've had no specialist attention for 17 years, then your GP may be sympathetic to making a further referal.

    IVI
     
  4. ukxmrv

    ukxmrv Senior Member

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    London
    This is no patients charter or a right to medical treatment in the UK as we have no written constitution or anything that entitles this to us in law. The provision of medical treatment for ME patients has not been tested in a court of law unless you count the legal challenge the NICE guidelines which resulted in the Judicial Review.

    Until a ME patient brings a legal case against their GP, PCT, SHA authority or similar we do not know what the position is legally. Although patients have considered this and obtained legal opinions no one has done this. Lawyers will not act for the patients who have done this so far. Most legal opinions have been given under the Human Rights legislation.

    You need to form an idea of what specifically you are asking for and how far you would like to go to get it. For example, how do you intend to force your GP to give you a EBV or XMRV test (and I'm just picking these as examples)? If you had the tests what would you expect them to do with the information?

    Yes, GP's/clinics and NHS consultants do have some lee-way in prescribing tests and treatments but it is becoming more difficult to find ones who are willing to stick their necks out. It's a postcode lottery. What some patients do is share names of consultants who are useful and then try to get referrals there, rather than trying legally to "force" unwilling medics to do things.

    My experience has been to start with the GP and make a case for a test I would like. If they refuse I then make a complaint to the practise manager. If they refuse then I appeal to the PCT.

    To use your example of EBV and XMRV testing, your PCT may argue that an EBV is available at a NHS hospital and agree on that, they may also argue that as no NHS hospital offers an XMRV test then they will not provide it. You may be able to get a private doctor to write a report that you need these tests and that may away the PCT.

    If you were able to get a EBV test and it was positive, you then face the hurdle of finding a doctor who will treat it. I've been told by NHS doctors that there is no such thing as a chronic EBV infection. Bringing them published researching on treating EBV does no good.

    Until a ME patient tests this in law we don't know what the outcome is. A lawyer may be able to give you a legal opinion and look at cases of similar diseases. Not many patients have the resources to do this and prefer to spend their time and money on private doctors or treating themselves.

    We have thousands of ME patients sentenced to living death in their homes with no medical treatment.

    It's been a battle of wills between me and my PCT and I have been able to work through the system to obtain some medical care refused by my GP. My PCT uses the NICE guideline as the basis of their original argument. My job has been to argue against this or to point out areas that I think are covered by the NICE guideline and they are not providing. Also things like the Neurological framework and treatment for long term conditions. Any guideline that I can find and use.

    I'd also like to use the EU laws as well but just too sick to battle/travel etc.
     

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