Funding fro Breakspear Hospital in UK

Discussion in 'Fibromyalgia Main Forum' started by jillbray, Mar 23, 2003.

  1. jillbray

    jillbray New Member

    I am fighting the UK health service for funding for my daughter Kate’s treatment at the Breakspear Hospital for Allergies and Environmental Medicine.
    Kate was brought back from near death some four years ago, when she was unable to walk, feed herself, etc. by Dr Jean Monro to a point where she now walks again after some three years and is on the way back to health. Kate has, inter alia, EBV, candidiasis, gut dysbiosis, mercury and arsenic poisoning, MCS, a poorly functioning liver, etc.
    She has been refused funding for CFS (no mention of what they understand by that term) on several grounds. If anyone can give me chapter and verse on how to refute any of the arguments given below, I should be most grateful.
    The decision not to approve funding for the Breakspear Hospital was based on the lack of clinical effectiveness of the treatments offered at the Breakspear for CFS. This is provocation/neutralisation, as practised by Dr Rea.
    Despite providing masses of literature, none of this has been deemed proof of the clinical effectiveness of the treatments offered by the Breakspear Hospital for CFS.
    It was stated by Kate’s consultant that ‘there is very little if any scientific basis in terms of research or clinical trials to support Dr Monro’s techniques… In the absence of scientific theory or clinical evidence to support their practice one has to assume that it is a major placebo effect [and] I would not wish to legitimatise unsound medical practice’.
    The Panel sought expert advice, as the tests conducted are not routine investigations.
    This was reviewed by a Dr Ellis, a Consultant in Infectious Diseases (sic!) for an opinion. Dr Ellis states ‘[this is a] very alternative approach for which there is little or no scientific basis.’
    A Consultant in Clinical Biochemistry commented: ‘On the whole the investigations of this lady are outside the traditional investigation of proven diagnostic ability on offer to anybody with the National Health Service’. He also did not know of anybody within the NHS who would be willing to advise on these tests. The pathology tests that the NHS would perform all appear normal or would not be of major concern.
    The Chief Medical Officer’s Report on CFS/ME of Jan 2002 identified graded exercise therapy, cognitive behavioural therapy and pacing as potentially beneficial in modifying the illness experience. It was the Panel’s understanding that none of these strategies is part of the treatment offered at the Breakspear Hospital.
    Where do I go from here? So much of this is clearly wrong – but I am neither a doctor nor a lawyer (though Kate has a solicitor working for her), so need very substantive evidence from somewhere to pass on to the relevant people.
    Many thanks in advance,
    Jill Bray
  2. teawah

    teawah New Member

    I am sorry that you are getting such a hard time. It is disgusting that we have to suffer because of personalities that assume they know the answer to the worlds ills. Ignorance is not a gift.

    I have absolutely no answers for you other than to suggest that you keep pounding away at the computer and search engines for info regarding your daughters specific problems. Unfortunately, if these people are anything like my physician, they won't bother to read any info given them. They typically think they know it all and you couldn't possibly have any more to offer them. Basically it is mostly political, in my opinion.

    I will pray for your daughter and Bless YOU for loving her so very much.
  3. pinkquartz

    pinkquartz New Member

    i tried to get a referral to the Breakspear in 1997 the G.P. i had then was supportive, only i moved down to Dorset and was laughed out of the doctors surgery for expecting the good people of Dorset to fund my medical needs.
    Despite changing G.P. i can't get the go ahead. Its really really stupid because of course i am so ill that i cost the NHS and the taxpayer money to help plus i can't work and its just plain annoying !!!
    None of this is helpful to you Jill but if you do find a way please post a message here for me. I have to fight on by my self and i'm too ill to fight much these days.
    lets hope there some good news ahead

  4. nell-UK

    nell-UK New Member

    My parents and I were in a similar situation to this and I wish I could offer more advice to help. I was paralysed and unable to speak, having to be turned and fed and very ill, I was put on the drug Ampligen by Dr Hyams but my parents couldn't care for me any longer and needed a break, no one on the NHS would take me as they wouldn't accept the drug I was on, we tried to get funding for a clinic which I ended up going into (a private one)....they could offer me nothing, only the prognosis that I would never improve.(Which I have)

    I am so sorry you have to face this, it makes me so angry that we are treated this way and the treatments which so obviously work are just not even recognised, the NHS needs to drag itself back from the dark ages that it is stuck in. Like someone above has suggested scour the net looking for case studies and proof that these treatments do work, there must be something published in a medical journal about this, that's what you need, unless it has been published in that way they won't listen. In my case they wouldn't come near me as I was on an unlicensed drug but perhaps with Kate's treatment there may be a lot more evidence these days, even if not in our country.

    I wish you lots of luck though with your fight. The only other thing I can say is that I know a girl who raised the money for her treatment by writing to companies and getting the funding that way, but it's very sad that we have to do this.