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Can ME/CFS patients in the UK choose who they go to see on the NHS?

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 2, 2014.

  1. charles shepherd

    charles shepherd Senior Member

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  2. Min

    Min Senior Member

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    Who on earth is there to see on the NHS, except fatigue clinics coercing us into the very graded exercise that has pushed many of us into permanent severe disability, and gving us cognitive behavioural therapy for our 'abnormal illness beliefs?

    Where are the NHS doctors who treat the neurological illness myalgic encephalomyelitis as a physical illness? Even the private doctors who dare to do so are risking their careers.


    The situation is farcical. It's like people with broken legs being told the break is imaginary, and told to repetedly hop on the affected leg, then told they were not doing it right when the leg gets worse, with all research money being spent proving hopping therapy works for broken legs.
     
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  3. charles shepherd

    charles shepherd Senior Member

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    Min

    I don't know where you live but we receive regular feedback from people from all over the UK in relation to hospital based NHS referral services for people with ME/CFS

    The overall picture is very mixed - with good reports as well as bad, and sometimes even very bad reports

    But it is not as bleak or as one sided as you paint it

    There are a number of physican led hospital based referral services for ME/CFS patients where our members consistently report that their management has been helpful and caring, and tailored to their individual needs

    Examples include the NHS services run by Professor Julia Newton in Newcastle, Dr Abhijit Chaudhuri (neurologist) at Queens Hospital, Essex, Dr Amolak Bansal (immunologist) in Surrey and Dr Vinod Patel (endocrinologist) in Nuneaton
    The Countess of Mar is trying to help people who want to see a particular consultant, who may not be the local NHS service provider, do so
    She should be thanked for her determined efforts to obtain clarification from the Minister!
    MEA NHS referral services directory:
    http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/
     
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  4. Sasha

    Sasha Fine, thank you

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    @charles shepherd - when I attended a specialist NHS ME/CFS centre some years ago (which I won't name), I would say that my treatment was caring and tailored to my individual needs and nevertheless totally, utterly useless, apart from getting better sleep meds for my insomnia. What was on offer was (surprise!) GET, pacing, and CBT. To their credit, they agreed I didn't need CBT and didn't push GET when they realised I was too sick even to establish a stable activity baseline. They listened to me and didn't push things when I told them they weren't working. That's why I'm describing them as being caring and as tailoring their programme.

    There was no medical treatment, and that's the crucial issue.

    I'm aware that Prof Newton offers testing for OI and treats it, but is there actual medical treatment for our ME available at any of these centres that you're naming? Or anything else that Prof Newton offers?

    I've had referrals to immunologists, infectious disease specialists, cardiologist and so on over the years and although they're all caring people and accepted that ME is a neuroimmune disease, they didn't have anything to offer: they just didn't know enough about ME.

    We desperately need people who are experts in our condition - not just with a single-discipline perspective on it - and will provide actual medical testing and treatment. I've yet to find anyone in the NHS who will do that.
     
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  5. Min

    Min Senior Member

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    My wonderful private specialist has been banned by the general medical council from working with myalgic encephalomyelitis and Lyme patients because he dared to treat these as physical illnesses and actually to test for and treat pathogens.

    It's the self serving psychiatrists who pretend we have their invented Bodily Distress Syndrome who should be banned from working with us.


    I do not know if any of the doctors you mention actually run tests for heart problems, viruses, bacteria and parasites Dr Shepherd. I am in the South West and have had three decades of being offered so called help to 'manage'' my symptoms; this help consists of being treated as a naughty child who refuses to exercise, rather than as a patient with a serious neurological illness who has already been made worse by graded exercise.



    Many of us do find the current scandalous situation more than a little bleak Dr Shepherd.
     
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  6. Esther12

    Esther12 Senior Member

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    A danger with judging them in that way is that it can be hard for patients to know what standards to judge clinics by. I found the NHS CFS clinic to be unhelpful, but it was only years later, after reading more CFS research and coming to see how manipulatively they'd misrepresented the efficacy of CBT/GET, that I realised how truly disgusting their treatment was.

    So many patients have been so badly treated that just receiving some official 'recognition' from the NHS can be valued, even if those doing the recognising are also misrepresenting the efficacy of treatments in way which feeds in to the poor treatment patients go on receiving.

    Lots of patients provide positive reports of homeopaths - but they're still quacks. Some people with health problems just like 'care', and that's fine so long as everyone involved is being honest about what is happening. It's important that this is not used as a justification for allowing medical staff to claim greater expertise than they have, or for this to be sold as a 'treatment' to those how have no interest in NHS 'care'.

    How many of those making money from providing CBT/GET at NHS centres have called for the release of the results for the PACE trial's protocol defined outcomes? Without having done this, I really do not think that they can be seen as providing acceptable care to patients, as they are not working to allow informed consent to their interventions.

    PS: If patients were granted more control, I wonder if this would help shut down some of the dodgiest places? More power to patients would have to make it harder to mistreat them.
     
    Last edited: Aug 2, 2014
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  7. Esther12

    Esther12 Senior Member

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    Sorry to hear that you've had a disruptive time, but it could be that there really was good reason for banning them though. Do you know if the testing they were using did have good evidence of reliability and specificity? There has been trouble with dodgy tests being used in this area, and it's not just with psychiatry that there's a problem with people making unfounded claims to patients. Hope things pick up for you regardless.
     
  8. Min

    Min Senior Member

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    The impression frommany myalgic encephalomyelitis patients seems to be that the clinics are mistreating rather than treating. That has certainly been my experience.
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think the clinics are led by doctors (at best), aren't they? Doctors are not necessarily readers of scientific research papers, but follow NICE guidelines.

    It's those guidelines that urgently need changing. I think that the last review of the ME/CFS Guideline was deferred for several years, causing an outcry, but with no effect, of course.

    If the guidelines were correct, the treatment would presumably be correct.

    BTW, I don't think I have EVER been offered a choice of specialist in any discipline for any illness. I have not even been asked for my preference.

    Correction - my current GP may have offered this, but my own hands were tied because I depend on a volunteer transport service, and they will only take me to one hospital because the one I prefer is outside the official area for my GP practice, or something like that.
     
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  10. snowathlete

    snowathlete

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    I agree that The Countess of Mar should be thanked; for this, and for all her other good work on our behalf.

    I'd probably be happy to see any of the specialists you list above, it' just a shame that there aren't more worth seeing in the country and better guidlines for others to work to. As you know, many patients are too unwell to travel to see these doctors even if they are allowed so they have to see those close to their homes.
    My local ME/CFS 'specialists' are pleasant people, but they are not really specialists at all, and actually caused me significant harm through their treatment in line with the NICE guidelines before I knew better than to go along with their 'treatment'. I don't blame the actual people in this particular case, they just weren't very good at thinking for themselves, and were just following appalling guidelines blindly. Unless I know a specific doctor truely is a specialist who knows what they are talking about, such as Newton or Bansal, I would reccomend people avoid their local clinic like the plague.
     
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  11. Esther12

    Esther12 Senior Member

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    I get what you're saying, but for people being paid a professional wage to specialise in providing CBT/GET to CFS patients, I think that they do have a responsibility to be sufficiently aware of the evidence to recognise how the data from PACE has been misrepresented, and the need for the trial's protocol defined results to be released.
     
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  12. charles shepherd

    charles shepherd Senior Member

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    Have you read the Minutes and my comments in relation to the meeting we had a few weeks ago with Professor Mark Baker from NICE to discuss the 2007 NICE guideline on ME/CFS? Although he didn't use the term the MEA has consistently used to describe the NICE guideline - 'not fit for purpose' - he did acknowledge that it does not meet the needs of all the people who come under the ME/CFS umbrella. There is nothing NICE can do about this at the moment - their instructions now come from NHS England. Which is why we are now trying to arrange a meeting with this organisation………

    Minutes to meeting with NICE at the House of Lords:

    http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/
     
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  13. charles shepherd

    charles shepherd Senior Member

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    Julia Newton has a well deserved international reputation for her research into cardiovascular factors and POTS in ME/CFS

    And I would be very surprised if any of these doctors did not arrange appropriate investigations for infection, cardiac malfunction etc where appropriate

    A small collection of colleagues I have worked with over the years - Nigel Speight, William Weir, Peter Behan, Tony Pinching - have now left the NHS and either gone private or retired

    And they are not being replaced
    So I think it's important to give a bit support and encouragement to those NHS doctors who believe in a biomedical model of causation and management - even if they may not be doing everything you want
    Otherwise, the numbers may diminish even further....
     
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  14. Min

    Min Senior Member

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    It's somehow the patients fault the numbers of doctors who treat this physical illness as a physical illness are so incredibly tiny?
     
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  15. alex3619

    alex3619 Senior Member

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    (Bad pun ... you are warned!) Kind of makes one hopping mad, doesn't it?
     
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  16. golden

    golden Senior Member

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    @charles shepherd

    Has there been any further clarification on changing G.P. to outside catchment area?

    I believe the issue was in arranging home visits.

    The G.P. I chose is stalling until this is resolved.

    Thanks

    Golden
     
  17. Jonathan Edwards

    Jonathan Edwards Board Member

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    You are right in a way Sasha, but I think Charles Shepherd is making some important and valid points, and in a suitably measured way. The problem, rather as Esther has pointed out, is that there are no medical treatments that are more adequately tested than CBT. At least that is what I seem to have learnt coming at this from a neutral outside position. I am sceptical of CBT but I see no reason to coerce doctors to use equally untried medical measures.

    I have no doubt that the level of analysis on PR is higher than in the heads of most doctors and I am sure that should be used as a strength in persuading medical researchers to focus on ME. But that means getting the arguments right and not making the same mistakes as the people being criticised.

    And I am not sure that doctors can be blamed for the lack of service. Min asked 'It's somehow the patients fault the numbers of doctors who treat this physical illness as a physical illness are so incredibly tiny?' The answer probably has to be yes it must be, in a strange way. Mr Jeremy Hunt is in charge of the NHS because patients, or people as a whole, voted his party in to government. Nobody else is in charge of the NHS purse except past, present and future patients. The current government has so little interest in providing a safe effective service that they tried to pass a law saying that the secretary of state for health was no longer responsible for people's lives and wellbeing. I presume that they were voted for simply because people are swayed by the promise of lower taxation - but this is what we get as a result. In a recent survey the NHS did well on several points but badly on keeping people alive. It is because the system is underfunded to the extent of being unsafe that I resigned from NHS medical care and research. I would have liked to have continued but it was the only honest option for me, since I could not pretend I was offering my patients a safe service. There are young physicians who are getting involved in research - trying to make a difference. Best to support them as much as possible as Charles says.

    (I do not intend to be particularly partisan about this because the current state of the NHS has as much to do with Alan Milburn as Andrew Lansley. And Mr Clegg seems to have nodded through whatever he was asked to.)

    My impression is that not everything is bad though. There is an MRC research initiative into ME and other research groups are taking interest in ME. Patients and carers are doing a lot of the pushing but why not? All the emphasis on cancer and heart research came from charities pushing.

    I agree that we should go back to the 1970s pre-Thatcher time when, ironically, patients had complete choice to go to whatever hospital they liked. But I wonder what shopping around would achieve if looking for treatment. Careful exclusion of other diagnoses is obviously vital, as is at least sympathetic interest and support, but when I talk to NHS ME doctors they are only trying their best to do what they can with no resources. They would love to have other treatments but they are not in a position to research things themselves. They may be brainwashed by fashionable ideas and I am all for challenging that, and some of them do have a commercial interest these days, but most of them I think are just trying to keep people well if they can.
     
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  18. justy

    justy Senior Member

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    There is no service in South or West Wales at all - good, bad or indifferent. As for ruling out other conditions, I have now waited nearly two years (20 months) to see a rheumatologist. I have also seen an endocrinologist (12 month wait for that, then at least 6 months waiting for tests, then another few months waiting for them to get back to my GP, who then decides to try another speciality)

    So far I have been severely unwell for 6 years and in that time have only managed to see two specialists (one endo, one pulmonary which is still on-going - I had a CT scan with them last year and my GP still does not have the results, the results from my ACTH stim test went missing for a number of months)

    The whole process is creakingly slow and we are getting no where at all extremely slowly. Of course, now after all these years, they have me down as 'chronic' and have more or less lost interest in me.

    A recent trip to see a M.E 'specialist' in Europe has uncovered all sorts of interesting things from testing, that can be treated - bacterial infections, (including chronic chlamydia pneumonia, which was never tested for in the NHS despite the fact that I have had pneumonia twice in the past 6 years and many lung/bronchial infections as well as pleurisy), and na immune system in complete disarray.

    Friends and relatives have asked me why I cant take this information to my GP and get help through the NHS, I also wonder why, although I know it would be a waste of my time and precious energy to do so.
     
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  19. Sasha

    Sasha Fine, thank you

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    This is a very interesting topic, I think. I have had ME for nearly 30 years with a very high level of disability. I'm currently almost completely housebound/bedbound and in a good week, can manage an hour of social contact every other day. I'm barely able to look after myself: if I get even slightly worse, I won't be able to live independently. My quality of life is low and I'm now in my fifties. I no longer have much time to lose. I'm now willing to take treatment risks that I wouldn't have considered in my twenties because even if I recovered tomorrow, I may not have many years of good quality life left before diseases of old age start to kick in. Unfortunately, no NHS clinician seems to be willing to join me and allow me to take those risks.

    I take your point that at present, we don't have strong, large RCTs showing evidence for medical treatments of ME. However, in the absence of such trials, I think it's an enormous waste of patients' lives not to take a risk, especially with treatments that are low-risk. Would it not make sense for the NHS to trial medical therapies on patients, with full informed consent, not necessarily in RCTs but simply auditing the results that they get (possibly with a waiting-list control group), to inform the choice of therapies suitable for investigation by RCTs?

    It seems to me as though the NHS has forgotten that there's a discovery stage before an RCT ever happens. Fluge and Mella had a serendipitous observation, and that led them to an RCT. But because no-one in the NHS will take a risk, they're killing that discovery phase stone dead before it has even started.

    My GP constantly tells me that there aren't any RCTs that back up any of my treatment suggestions and I constantly tell him that I will quite literally be an old woman if we wait for them. It seems to me that ME is in the grip of a perverted form of evidence-based medicine: "never act unless there is evidence, even if it means leaving severely disabled patients untreated for 30 years".

    I don't know what it is that is standing in the way of the kind of experimentation that I'm suggesting. Patients are on the threshold of being able to pool results of self-experimentation by using data-sharing platforms such as OMI's OpenMedNet. Why isn't the NHS doing this? Is it "first do no harm", or "first don't get sued" or "first don't get sacked"? I really don't get it.

    I'm a huge fan of evidence-based medicine, properly and intelligently applied. I think our situation - 250,000 people in the UK, many severely disabled, completely untreated for decades - is perhaps unique in the NHS. In this situation, "do nothing until there's RCT evidence" makes no sense to me. I don't think that's in the spirit of evidence-based medicine as the founders conceived of it. I think our situation calls for some new and creative thinking. I think there's a new paradigm waiting to be born, and a huge opportunity for those who help give birth to it.

    Interestingly, I think Dr Bansal at the IiME conference said that the trial evidence for immunoglobulin was at least as strong as for GET/CBT and that he had repeatedly put in applications to his hospital to use it on patients and was repeatedly being refused.

    I think that's a bit of a stretch. As voters, we only get to vote in one party or another, even if we disagree with certain policies (even if we know what those policies are going to be once any given party is in power). I don't think we have such fine control over the NHS via voting in elections - we certainly, as voters, can't control who gets appointed minister. No party goes into an election making promises about medical provision for ME. Even if they did, and all 250,000 PWME voted for them, that wouldn't be enough to swing an election.
     
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  20. Min

    Min Senior Member

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    http://www.meassociation.org.uk/2008/02/liberal-democrat-leader-writes-on-mecfs/


    Shortly before the last general election, the Libdem leader wrote this letter to a Myalgic encephalomyelitis sufferer:



    Since becoming deputy prime minister he has been strangely silent on the matter.
     

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