Forward-ME Group | Minutes of meeting held on 15 July 2015

September 23, 2015


WEDNESDAY 15 JULY 2015, 2pm

These Minutes can also be found at

Countess of Mar (Chairman)
Janice Kent (reMEmber)
Bill Kent (reMEmber)
Christine Harrison (Brame)
Dr Charles Shepherd (ME Association)
Sonya Chowdhury (AFME)
Dr Paul Worthley (ME Trust)
Hannah Clifton (ME Trust)
Jane Colby (TYMES Trust)
Anita Williams (TYMES Trust)

1. Apologies had been received from Sue Waddle (ME Research UK)

2. Guest Speaker, Dr Martin McShane, Director of Long Term Conditions, NHS England


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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?


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.

4. Minutes of last meeting (16 June 2015) were agreed to be a true record.

5. Matters arising

5.1 Christine Harrison thanked the Chairman for writing to SNOMED. She asked for a close eye to be kept on their response.

5.2 Report on care at Burrswood (item 6.4 of last meeting). Hannah Clifton explained that work on the report had started two years before. It had only recently been completed and issued.

6. DWP

6.1 Training document. The Chairman said she had asked Martin Forsyth to meet us as she had concerns about the final version (April 2015). She thanked Sonya for sending it round to us.

6.2 PIP. Dr Charles Shepherd said there had been an announcement in the Lords to the effect that DWP were now on top of the backlog and that the changeover from DLA to PIP would start in July. Christine Harrison said she had been in contact with DWP. They would be talking to the new Minister on this subject and wanted an Implementation Working Group to be formed. She would be meeting Atos at the end of this month, but had received no further contact from Capita.

6.3 Budget changes. The Chairman observed that ESA was to be reduced by £30 to the same rate as Jobseekers Allowance. Members thought this might be a first step to abolishing it altogether. Sonya Chowdhury announced AFME were planning a help service for people receiving ESA. They would pilot the scheme in August and keep us informed.

7. Research

7.1 Dr Charles Shepherd said there had been a very good response from Welcome to the Collaborative, and Sonya added that other organisations had responded well

7.2 The Chairman had written to Invest in ME saying they really ought to join us. She was awaiting a response.

8. Canary film

The Chairman said it sounded good. Members said there seemed to be some problems about its distribution. The Chairman asked members to let her have their ideas on distribution. Jane Colby said we would need to see the film first; it was about an hour long. Dr Charles Shepherd said the name of the person to contact was Lindsey; we could invite her to come and talk to us. The Chairman said she would write to Lindsey.

9. Any other business


The Chairman referred to a paper from Denmark which discussed whether ME/CFS was a relevant diagnosis for patients suffering the side effects of the Human Papilloma Virus (HPV) vaccine. Members discussed problems relating to vaccines (would a young teenager think of saying they had ME before receiving a vaccine?). Programmes of vaccination were being done in a draconian way. One of the States of the USA had decreed that every child must be vaccinated before attending school.


Jane Colby asked about progress of the Charities Bill. The Chairman said she thought it had currently reached the Third Reading stage. Members discussed the distinction between small (“voluntary”) charities and those with very large incomes that paid large salaries.


Dr Terry Mitchell. Christine Harrison announced Dr Mitchell had died on 3 July. She read out a paper she had written which was an appreciation of Dr Mitchell’s work with ME patients. She passed it to the Minutes Secretary. Members suggested sending a letter of condolence; the Chairman said she would write and asked for an address.


Dr Charles Shepherd said that evening the TV programme “Trust me I’m a Doctor” would be about commercial nutritional supplements which, apparently, are not always what they claim to be. He also asked whether the Chairman had received a reply from Dr O’Sullivan. The Chairman said she had not; she would send a reminder.

8. The Chairman thanked all members Date of next meeting to be announced. The meeting ended at 3.30 pm

2 thoughts on “Forward-ME Group | Minutes of meeting held on 15 July 2015”

  1. When you refer to “the Canary film”, are you referring to Jennifer Brea’s “Canary in a Coal Mine”? That won’t be out till 2017. There’s another separate US documentary, “The Forgotten Plague”, that has just been released.

  2. In section 3.11, I read “Dr McShane confirmed that he would write to NICE. The Chairman asked if we could see a copy of his letter. He agreed. ” Has this letter been seen?

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