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NICE guideline on ME/CFS: Forward ME Group meeting with NHS England

Discussion in 'Action Alerts and Advocacy' started by charles shepherd, Sep 23, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    Forward-ME Group | Minutes of meeting held on 15 July 2015
    MINUTES OF THE MEETING HELD IN THE TELEVISION INTERVIEW ROOM, HOUSE OF LORDS
    WEDNESDAY 15 JULY 2015, 2pm



    Full Minutes:
    http://www.meassociation.org.uk/2015/09/forward-me-group-minutes-of-meeting-held-on-15-july-2015/

    This is the meeting we had at the House of Lords with Dr Martin McShane from NHS England in relation to trying to get the NICE guideline on ME/CFS removed from the NICE static list and revised.

    Follow up correspondence with NICE and NHS England is still in progress.

    Extract from the Minutes relating to NICE guideline discussion:
    2. Guest Speaker, Dr Martin McShane, Director of Long Term Conditions, NHS England

    2.1

    Dr Mc Shane outlined the structure and role of NHS England. The new Director, Dr Simon Stephens, had brought together the various “arm’s length” bodies because, although there was now less central control, collaboration and co-operation were needed. The prime function of NHS England was to oversee the commissioning of services in all areas of the NHS in England. It was directly responsible for all specialist commissioning and primary care commissioning and about 200 clinical commissioning groups. Public Health England was a separate body, and a number of public health services had been returned to local government – reversing a decision made some forty years before. He outlined the roles of a number of other public bodies with healthcare responsibilities including the Care Quality Commission and NICE. Dr Stephens had brought together all those bodies to work out a “five-year forward view”. The document they had produced was readable and short. A main feature was the need to do far more on prevention. There was a need to think radically about the models of care that exist at present. From this came the idea of merging primary care and community care together. The biggest problem for the NHS at present was long-term conditions. In addressing this problem, of equal importance with the doctors and patients were the carers and the community. There seemed to be support from the new Government for the principles set out in the five-year view, and the changes required. The gap between what is provided and what is needed had also been recognised by Government.

    2.2

    Dr McShane went on to say that for the past two or three years he had been focusing on a delivery model based around the person rather than the medical condition. At present all treatments were condition-based. There was growing acceptance that this approach did not look at the full range of the person’s problems. For example “You’ve either got a physical problem or a mental health problem”. Surveys had shown that patients did not feel involved enough in the process of determining what they needed for their full range of problems. Another problem was multi-morbidity. Traditionally medical students had been taught that you diagnose the patient’s disease and the cause and then you cure it. For about 50% of patients that approach was no longer tenable because “very few conditions travel alone”. He referred to an Australian study which had shown significantly poorer recovery rates for patients with co-morbidities, and observed that mental health patients often were not treated for their physical co-morbidities.

    2.3

    NHS England was therefore trying to establish a system of patient-centred care. That required a change in the nature of the consultation. Consultations should start by saying to the patient “Tell me what matters most to you”. There was a lot of evidence to show that the person best qualified to determine management of the patient’s condition was the patient. This is about empowering patients and carers. There were four big drivers in the NHS – politics, policy, measurement and money. The politics and policy had achieved the will to change. The system now needed re-aligning to take more account of measurement and money.

    2.4

    Dr McShane then referred to the massive changes already taking place in healthcare. He reported on a visit he had made to an adult Cystic Fibrosis unit in Sheffield, and pointed out that when he had been a medical student there had been no such thing as an adult cystic fibrosis unit – the patients then did not survive to adulthood. More people were now living with cancer than ever before; it had become a long-term condition. Much depended upon the adherence of patients to treatment, but if you want to change behaviour in patients you first have to achieve change of behaviour in the healthcare professionals. Change was taking place, but there was still a huge amount to do.

    3. Discussion.
    3.1

    The Chairman referred to Professor Mark Baker of NICE who had told Forward-ME that he could not do anything about the NICE Guideline on ME/CFS but that NHS England could. Dr Charles Shepherd added that Prof Baker had said ME/CFS was not on the “library” or list of medical conditions whose NICE guidance might be reviewed. How could we get ME/CFS on to that list? Dr McShane said that NICE’s remit had expanded a lot; it now included social care, for example, and quality standards. There was undoubtedly a capacity issue. Capacity, resources and a huge agenda meant that NICE guidance on a large number of conditions was unlikely to be reviewed for a long time.

    3.2

    The Chairman recognised the difficulty but pointed out that there had been misdiagnosis in about 40% of patients said to have ME. In many cases the true cause of illness could be successfully treated instead of the patient languishing in the “ME dustbin”. This misdiagnosis represented a huge cost to the taxpayer. All that was being offered to ME patients was CBT or GET which were often ineffective. Jane Colby added that parents get blamed if children with ME don’t improve after receiving CBT or GET, and in many cases this had led to Child Protection issues. Charles Shepherd pointed out that NHS England were keen on patient evidence; the ME/CFS patient representative groups had an abundance of evidence gathered from patients about CBT and GET. We were very supportive of change, and we had received a strong message from Prof Mark Baker that if NICE was so advised by NHS England they would seriously consider changing the guidance on ME/CFS. Dr McShane responded that he could ask about this, but the Department of Health (DH) would have to be involved too. The Chairman pointed out that both NICE and DH had said the responsibility was with NHS England.

    3.3

    Janice Kent referred to Dr McShane’s point about mental health patients not being treated for their co-morbidities (para 2.2 above). She had been at a CCG meeting the day before when the point was made that mental patients have shorter life expectancy than those with purely physical illnesses. The drugs they are given often have undesirable side effects such as desire to overeat or smoke. She said a lot of ME patients also had co-morbidities that were not being addressed.

    3.4

    Hannah Clifton said they had a lot of evidence of effective treatments at Burrswood, but providers said that NICE permits only CBT or GET. Dr McShane said that there was a problem with the “one size fits all” approach. We should be moving to Personalised Health and Care needs. The funding should follow the person rather than the person following the funding. That might take some time to achieve – it would involve a huge change.

    3.5

    Sonya Chowdhury said that plans like House of Care were admirable although hugely ambitious. A major problem reported by ME patients was that GPs did not seem to understand the illness. There was a need for this subject to be included in the training and education of GPs. What should we as charities be doing to improve that situation? Dr McShane said it was important to collect facts and figures on the impact of the illness. He had recently led a task force on the mental health of children and young people. They had discovered that about 40% of chronic mental illness starts before the age of 14.
    He quoted more figures to support the economic case for appropriate mental health interventions. The Treasury was definitely interested. This was the sort of information that was needed from the ME community.

    3.6

    Janice Kent pointed out that the ME charities had been supplying such information for years. They had provided it in the Report to the CMO. Christine Harrison agreed; she listed a number of working groups to which she had provided such information, including NICE. She disagreed with Dr McShane about biomedical treatment. The most important requirement for ME patients was a good doctor providing good biomedical treatment. Dr McShane agreed that the most important person in the provision of good treatment and care was the doctor in the front line.

    3.7

    Jane Colby agreed that the ME charities had been supplying information for years. In 1997 a big study of children had shown that ME was the biggest cause of long term sick absence in school children. The effect of the illness on children had been reported on many occasions since then, and yet only recently she had been involved in a case in Scotland where parents had been threatened with court action because their child, who had ME, was absent from school. The authorities did not seem to realise that the child was too ill to be at school. She also pointed out that absence from school was not the same thing as absence from education. Home tuition can be provided. This was a matter that ought to be emphasised in NICE.

    3.8

    Dr McShane said seeking changes to NICE guidance was problematical. There were so many different bodies claiming so many priorities. He could pass on Forward-ME’s demand for a review of the Guideline, but he would then be asked where ME stood in relation to diabetes, cancer and numerous other conditions which were subjects of NICE guidance.

    3.9

    Dr Charles Shepherd asked Dr McShane whether he could write to NICE saying that in the view of NHS England the NICE Guidance was in need of review. Dr McShane said he had received similar requests from people representing other illnesses, but he could reflect to NICE the intensity of our concerns about the need for review. However, he could not tell them that ME should have priority over other conditions. Dr Shepherd observed that if patients reported a drug was causing harm the position would be reviewed immediately. In this case they were reporting that GET was causing harm.

    3.10

    Jane Colby said it was important to realise that ME was not just fatigue. The pain could be intense. A child had said “my legs won’t do what I tell them to do”. She herself had been confined to a wheelchair for a long time. Anita Williams said her daughter had ME but the GP said he was unable to find anything and asked “what do you want me to do?

    3.11

    Dr McShane confirmed that he would write to NICE. The Chairman asked if we could see a copy of his letter. He agreed. Sonya Chowdhury said that AFME had a huge amount of patients’ experiences, surveys, and costings which they could supply. Any suggestions NHS England might have about how that information might be used would be gratefully received. Dr Charles Shepherd handed Dr McShane a copy of the MEA’s recent patient survey. The Chairman and members thanked Dr McShane for his talk and for dealing with our points and questions.
     
  2. JamBob

    JamBob Senior Member

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    Thanks for holding this meeting.

    As someone with T1 Diabetes, I am unhappy to see that Dr McShane is somehow trying to say that diseases like diabetes should get priority over ME/CFS.

    Diabetics have masses of treatment options and have had these options for many years. We also have new research coming out every week into new treatments and possible future cures for diabetes. There is lots of hope for diabetics and even if no cure ever comes, we have a manageable condition and plenty of services supporting our health. NICE have only just done another review of diabetes this year and it didn't exactly impart any new information.

    Meanwhile people with ME/CFS have no drugs, no decent supportive treatments and no treatments for treatable symptoms like dysautonomia. And to top it off people with ME/CFS are being "treated" according to outdated guidelines with damaging interventions like GET and CBT and those who don't comply are blamed for not wanting to "get better".

    I have the impression that Dr McShane doesn't really understand what ME/CFS is and how disabling it is to patients, their families and carers.
     
    Ellie_Finesse, Aurator, alkt and 11 others like this.
  3. snowathlete

    snowathlete

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    Interesting to see and thanks to those involved for their efforts.
    What Dr McShane seems to be saying, quite reasonably, is that there are lots of groups saying their disease needs to be reviewed/prioritised, and the inevitable question is where does ME/CFS come in relation to all the others. This is a key point because unless we can get across how common and how bad this disease is, in comparision to other diseases, then it wont get the appropriate amount of attention.

    I think this applies in other cases, not just the question of the NICE guidelines, and there needs to be a redoubling of effort and focus to get across the reality of how many people have this disease, how disabling it is, how longterm it is, the age of those affected, the number of people with a family member affected, the lack of awareness, and the lack of treatments and the lack of research, the economic burden, etc.. None of this is new to us, and it is correct that we've been saying this for years, but clearly it has not sunk in yet, the message has not hit home. People do need to hear the correct information lots of times over before it sucessfully displaces the incorrect information they already possess.

    In my view, getting the right people to understand these things is the first and most important part. Do that and you can get them onboard and the problem understood and given the right priority. Then you can start making real progress.

    I think some progress has been made in this area but we need to continue to play that broken record.
     
    Ellie_Finesse, MEMum, Aurator and 6 others like this.
  4. Sasha

    Sasha Fine, thank you

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    Very good point.
     
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  5. Bob

    Bob

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    There have been some studies published recently that compare ME/CFS to other diseases.

    For example, this graph (I can't work out exactly which study this graph is taken from but ME Research UK have written about it here and here) shows how type-1 diabetes compares with ME/CFS (in children). It compares ME/CFS with healthy controls, Type-1 diabetes and asthma, in children:

    [​IMG]

    And this graph (from this study) compares quality of life in ME/CFS with various other illnesses, including diabetes (types 1 & 2) and some cancers:

    [​IMG]


    Cort Johnson recently wrote a blog about quality of life in ME/CFS patients:
    Chronic Fatigue Syndrome Found Worse Than Diabetes, Multiple Sclerosis, Cancer, etc.
    http://www.cortjohnson.org/blog/2015/08/05/chronic-fatigue-syndrome-worse-mulitple-sclerosis-cancer/
     
    Last edited: Sep 23, 2015
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  6. charles shepherd

    charles shepherd Senior Member

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    Thanks Bob

    Yes, there are now a number of good ' quality of life' studies demonstrating just how disabling ME/CFS can be when compared to other long term conditions, including cancer

    I don't think there is any disagreement, or lack of acknowledgement here, in relation to NICE and NHS England

    What they really need, and will help to change minds about revising the NICE guideline, is good sound replicated research that links symptoms to pathology (although their interest in causation is very limited) and evidence from clinical trials which demonstrate safety and efficacy of interventions (patient evidence comes well down the pecking order!)
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    What's COPH?
     
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm a bit concerned about the possibly slightly-muddled references to mental illness in connection with ME/CFS:
    As for combating the views of doctors, a start would be to stop, and then counter, the dreadful videos produced by Clare Gerada and Trudi Chalder, and the more-recent BACME report also intended for use in training UK doctors, and any similar training in current practice.

    Here are the Gerada and BACME abominations.
     
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  9. Sasha

    Sasha Fine, thank you

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    But they don't need that in order to stop pushing CBT and GET. Those things are doing damage.
     
    MEMum, mango, Aurator and 4 others like this.
  10. jimells

    jimells Senior Member

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    My hat's off to Charles and everyone else who continues to attend these kind of meetings knowing the likely result will be... nothing. Bureaucrats can always come up with reasons to do nothing. How about looking for reasons to to do something? But when Important People want something done, well they are right on it, aren't they?


    I wouldn't be too sure. It smells more like leaving patients and carers to their own devices and blaming them for not making the right decisions. Some days I can barely get to the toilet, but I'm supposed to be able to self-manage my condition? If self-management means I can order my own lab tests and prescribe medications, maybe that would be a help, but of course that's not what it means.

    Their new model will include lots of social workers, psychotherapists, and psychologists promoting the magic cure-all CBT for anything and everything. As for having professionals that actually understand our disease...

     
    sarah darwins, Valentijn and Aurator like this.
  11. Aurator

    Aurator Senior Member

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    Paragraph 2.2 is the most troublesome to me. With his avowed dislike for treatment approaches that choose to distinguish between physical and mental conditions, and his glib "very few conditions travel alone", it sounds like McShane is doing his best to keep the waters in which ME swims muddy - to ensure that it continues to be regarded as at least partly psychological and that state investment in actually getting to the bottom of the disease remains at zero.

    It makes for thoroughly depressing reading, frankly, grateful though I am for Dr Shepherd's representations on our behalf.
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Sorry - I seem to have forgotten the link to the BACME document - here it is:
    http://www.bacme.info/document_uploads/BACME_docs/BACMEguidewithpharmacology2015.pdf
     

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