Forward ME

Minutes of the Meeting held in the Television Interview Room

House of Lords

Tuesday 4 November 2014, 2pm


Countess of Mar (Chairman)

Nicky Strong (MEA)

Sonya Chowdhury (AFME)

Bill Kent (reMEmber)

Jane Colby (Tymes Trust)

Anita Williams (Tymes Trust)

Sue Waddle (ME Research UK)

Christine Harrison (BRAME)

Dr Paul Worthley (ME Trust)


Dr Michael Devlin (Medical Defence Union)

1.      Apologies had been received from Dr Charles Shepherd, Janice Kent, Mary Jane Willows and Hannah Clifton


2.        Presentation by Dr M Devlin, Head of Advisory Services at the Medical Defence Union (MDU)


2.1The Chairman welcomed Dr Devlin who said he would start with some background information about the MDU. It represented doctors and other medical professionals. It had been formed 125 years ago and membership had grown continuously since then. They defended doctors who were being sued and those accused of crimes, but they also helped those against whom there were complaints. Their advice line dealt with about 20,000 calls a year relating to complaints whereas actual claims amounted to 4,000 to 5,000 a year.


2.2 Dr Devlin said with today’s meeting in mind he had looked up the files involving ME/CFS patients since 2003. There had been 140 complaints over that eleven year period – a prevalence of 1/8 of one per cent which, he said, sounds small but is about the same proportion of complaints as for other conditions. He had identified some general themes and had found that the biggest area of complaint (12%) had been the attitude of practitioners. The next highest area (10%) related to medicines (eg unlicensed drugs) and treatments; for example where a patient asks for something and the doctor disagrees. There is then conflict. 9% of complaints were about failure to properly diagnose. There were very few actual claims by people with ME but there were a few over failure to diagnose. About 7% of complaints were about inadequate treatment and about 4% each on delay in diagnosis and doctors’ assessments for benefits purposes. There was a variety of other complaints including some relating to deaths (eg reports to coroners). On this point he referred to a handbook for doctors written by Dr M Sharpe which said that people do not die from ME. However, he was aware that deaths of ME patients had been recorded; there had been several suicides and one patient who had starved to death.


2.3 Dr Devlin asked what could be learned from this. On the attitude of practitioners he suggested the main problem was poor communication. There appeared to be still as much ignorance about the illness as there had been when he was a student. Better training was needed. On complaints relating to medicines (eg unlicensed drugs) he explained that since the 1980s the emphasis had been on evidence-based medicine, and this could be a problem. Also many doctors don’t know what works, and he was aware that not enough money was going into ME research. This also applied to dentists. The MDU had received some complaints about mercury fillings for example. He commented that dentists know less about ME than doctors. He concluded his talk by saying that he spent a lot of time talking to patient and professional groups, and would glad to receive feedback from Forward-ME members. The Chairman thanked Dr Devlin for a very helpful presentation.     


3.      Questions


3.1  The Chairman asked whether the MDU had any input to doctors’ training. Dr Devlin said their input was limited but important. Directly they could suggest that more/better cover was given to ME in doctors’ training. Indirectly they could encourage students to enquire into this important subject.

3.2   Sue Waddle had two questions. She referred to the handbook by M Sharpe which Dr Devlin had mentioned. The information in it about ME and deaths was inaccurate. How could this be refuted? Dr Devlin replied that if problems of this kind were put in a complaint to the MDU they could take it up with the person concerned. Sue’s other question was about the instruction that doctors should “do no harm”.  But Graded Exercise could be harmful (even though it is recommended by NICE). A patient who refused that treatment might then be left without any help, or referred to a psychiatrist, and given the impression it was their fault. Dr Devlin said that in the absence of a well-defined pathway and centres of excellence this was a difficult problem. The solution lay in having good facilities everywhere which was not the case at present. But the injunction to “do no harm” was of great importance.  

3.3  Dr Paul Worthley said he had been very interested in complaints relating to unlicensed drugs, and he would like to see a breakdown of the complaints. Many palliative care doctors used unlicensed drugs, and they were prescribed in a number of cases. The Chairman mentioned the case of a child whose consultant had recommended vitamin B12 injections but the district nurse refused because the medicine was not licensed. She also referred to a child taken abroad to receive medicine that was unlicensed in the UK. Dr Devlin said that unlicensed drugs could be used, and the GMC had given clear guidance on their use. There could be a problem where the doctor had insufficient knowledge, and it was important that this sort of information was shared and not just known to a few. 

3.4  Jane Colby said she had been informed that in 2001 doctors were warned of the possible dangers of exercise and told to use caution in prescribing it. Dr Devlin said that was not about ME; it was to do with people who wanted to use gyms/fitness suites. The people running those places would ask the individual to get a doctor’s certificate to say whether they were fit for such activities. Jane said some doctors were keen on Graded Exercise but there was a lot of evidence it made ME patients worse. Had the MDU received any complaints about this? Dr Devlin said he was not aware of any. The Chairman pointed out NICE had said no doctor should practice GET unless they fully understood ME.

3.5  Sonya Chowdhury said that NICE specifies that doctors would work in partnership with patients and therefore if a person does not want a specific therapy such as  GET or any other therapy they can refuse this., How could we, the patient charities, support patients and GPs and other therapists to work better together – and make complaints if necessary as we know often complaints are not pursued when they could be helpful? Dr Devlin advised raising your concerns early. Most complaints were resolved at an early stage but the longer things go on the worse it can become. He pointed out that complaints can be taken to the GMC, and patients should not be afraid to ask for a second opinion – you have that right. He added that there is good practice out there and championing good practice is important. Sonya commented that it is not easy for debilitated patients. The Chairman asked if the charities could complain to the GMC on the patient’s behalf. Dr Devlin said this would be difficult. The Medical Act requires the patient to make the complaint, unless they are without capacity – we could try then.

3.6  Christine Harrison pointed out that with ME there was the problem of the patient   (or parent) being disbelieved. Patients were reluctant to complain for fear that a psychiatrist or social worker would be brought in. A number of health care professionals regarded the condition as psychosomatic or psychosocial. The Chairman said this was particularly so where children with ME were concerned.

Dr Devlin said all this pointed to the need for a better deal for patients. Designated local experts and a clearly defined pathway were needed. Because we haven’t got that yet individual GPs make individual decisions which vary tremendously.

3.7  Nicky Strong said her daughter had ME and POTS. She had been prescribed a                        particular drug by a cardiologist but when it ran out the GP refused to prescribe more. Dr Devlin said that in 1990 the Department of Health had issued advice that there should be a protocol between specialists so that all involved would work together. That is what should happen here. It had nothing to do with budgets.

3.8   Jane Colby wondered whether GPs were sticking rigidly to the NICE Guideline in every case and not looking at other possibilities for patients. Dr Devlin said the MDU had not received complaints about adherence to NICE. It was made clear to GPs that NICE Guidance is just that. Doctors should consider all possibilities.

3.9  Sonya Chowdhury said good guidance was needed for patients on how to raise problems such as not getting a particular drug. Was there something we could signpost patients to? Dr Devlin said he had done some work with the Department of Health in 2008 developing complaints procedures. Every Clinical Commissioning Group (CCG) should have guidance on how patients can raise concerns and a lot of GMC Guidance was very clear and helpful. There were also organisations like Healthwatch. Sonya replied that Healthwatch provision was patchy. What was needed was perhaps a small, clear leaflet advising patients what steps to follow. We could produce something ourselves, but what about NHS England? Dr Devlin added that complaints could be taken directly to the NHS Ombudsman, and also the Care Quality Commission. He left his card for people who would like to obtain figures etc. The Chairman thanked Dr Devlin and said he had been extraordinarily helpful. 


4.      Minutes of last meeting (21 October 2014)

Item 6, DWP Matters. Christine Harrison said she would send further details to be included. Jane Colby said she would do the same re item 8 (NICE and children), and item 7 should be amended to show that she had asked about money received as a result of the collaborative, not as a result of the conference. Item 3.6, Jane said it was Prof Lewith who had used the term “burnout” not her; she would send an amendment. The minutes were then agreed as a true record.


5.      Matters arising

5.1 Healthtalkonline. The Chairman send that the charities individually could decide whether to give any support to the proposal but, having given due consideration, she had decided Forward-ME could not give its support. Sue Waddle said MERUK could not support it. In reply to Dr Paul Worthley she said this was because they could not justify the cost of the project (£350,000) to their members when money for much needed research was so hard to come by. Sonya Chowdhury said AFME were happy to support it in principle but there needs to be clear justification for the cost of the project. The Chairman said she would write to Prof Lewith and colleagues saying that Forward-ME could not support the proposal.

5.2 NICE (item 8.2 of last meeting). Members thanked the Chairman for getting NICE to remove CFS/ME from their mental health section. However, it had also been removed from their neurology section and was now listed as a “stand alone” condition. The Chairman said that under the ICD classification it was a neurological condition. She would write to Professor Baker to try to get it restored.

5.3 Contact with NHS England (item 5 last meeting). Christine Harrison said she had followed up Dr Charles Shepherd’s suggestion and had established Mike Durkin was the National Director of Patient Safety for NHS England. This would be followed up.


6.      DWP Matters

Christine Harrison said she had met DWP again. She had waiting for an approved version of their discussions which could then be minuted. The Chairman thanked Christine on behalf of all members for the great amount of work she had put in on this subject.


Christine Harrison reported on her work with the DWP:

·         She was due to have a private meeting with Capita at a later date regarding ME and CFS. She is a member of the Capita PIP Expert Collaboration Forum.

·         She continued to be active with Atos as a member of their PIP Engagement Group and has already given information and feedback on ME and CFS.

·         She had not received a response from Mike Penning MP, Minister for the Disabled (17 June 2014) or his successor, Mike Harper MP to letters similar to the one sent to Lord Freud about ESA and WCA.

·         She fed into the final independent review of WCA and ESA in July.

·         She re-emphasised the need for DWP PIP to accept ‘further evidence’ from carers, support workers and family as well as ‘further medical evidence’ as many with ME and CFS have little or no support. Claimants should send photocopies (not originals) of the relative supportive evidence.

·         She had successfully ensured that everyone applying for PIP should be given a personal password as an extra security measure, to prevent scams, for example.

·         DWP, Capita and Atos were all working towards paper-based assessments when presented with good supportive evidence of severe and late-stage conditions, in particular.

·         She had responded to the First Independent Review of PIP. A key message was that there should be 5 and not 2 Independent Reviews.

·         Natural reassessments of those on DLA for PIP would begin in mid-November in selected areas of the country where PIP assessments were achieved on time.

·         Claimants should ask for previous relevant medical evidence held by the DWP for their DLA claims to be carried into their PIP files. They should also ask for a copy of the evidence held for their previous DLA claims to be given to them before their DLA files are destroyed subsequent to the decision on their PIP claim.

    The following statement of Christine’s work with PIP had been cleared by the DWP for inclusion in Forward-ME minutes:

“On 17 June 2014 Christine Harrison, BRAME, formally asked the DWP PIP Team

                In the June statistics report Page 7 – Caseload by main disability

1.      In which group ate ME (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) included?

2.      ME and CFS are classified by WHO ICD 10 G93.3 as neurological diseases – so if they are not included in the “Neurological Group” then why not?

3.      If they aren’t can this be addressed and corrected?


   The response received from the DWP PIP Team in time for the PIP ISF meeting on 25 September 2014:

After discussions with the Medical Policy Officers and analysts we have made a decision about how we will group the published data in the future. In addition to the PIP categorisation of medical conditions, main disability will also be published according to the International Classification of Diseases and related Health Problems (version 10) i.e. ME and CFS will be grouped under neurological diseases under the ICD categorisation. Statistics on the ICD categorisation basis are provisionally scheduled for the December 2014 publication – with a contingency of March 2015 if the necessary development and quality assurance work require more time.

Christine had achieved the clarification she had wanted that the DWP would recognise the WHO classification of ME and CFS as neurological diseases – however she is seeking clarification on another point, which she hopes to have by the time of the next Forward-ME meeting on 4 November 2014”

For the 4 November meeting Christine reported that she had asked the DWP PIP Team for clarification on the statement:-

In addition to the PIP categorisation of medical conditions, the main disability will also be published according to the International Classification of Diseases and Related Health Problems (Version 10)i.e. ME and CFS will be grouped under neurological diseases under the ICD10 categorisation.

On 3 November Christine received a response stating:-

For both PIP categorisation and ICD 10, ME/CFS will be shown in the statistical outputs within ‘neurological conditions’.


7.      Research collaborative

Sonya Chowdhury said there had been new collaborations forming as a result of the conference that were exploring new applications for research. They would be doing a review/evaluation six months after the conference to determine what had come out of it. Sue Waddle said MERUK had recently received five “high value” research bids; whether they are of high quality remains to be seen.

She does not know whether or not they were received as a direct result of the collaborative conference[SC1] .

8.      Kumar and Clarke

The Chairman referred to a draft letter written by Dr Charles Shepherd which all members had received for consideration, Christine Harrison proposed the word “uncertainties” (penultimate para, second page) should be removed. Agreed unanimously that after that one amendment the letter should be sent. Sue Waddle proposed that Charles and Dr Nigel Speight compose a similar letter about the entry in the Oxford Textbook (M Sharpe).  That too was agreed unanimously.

9.      Royal College of Paediatrics and Child Health

The Chairman said she had written to them. Sue Waddle asked whether any of the parents had taken legal action. There was considerable discussion about the work involved in trying to complain or to get a case before the GMC.

10.  Any other business

Sonya Chowdhury referred to the letter from Karen (a member of their Patient Reference Group). She had proposed the charities work together to agree on the language used in leaflets etc. about the illness. There was concern about the use of words like “fatigue” and “tiredness”. Bill Kent said reMEmber did not use the word “tiredness” at all. They referred to muscle fatigue and weakness, cognitive difficulties etc. Others agreed. Sonya asked if she, working with Karen, could produce a proposal on wording which members could consider and hopefully agree. This was agreed. The Chairman suggested thinking of words to avoid for discussion at the next meeting.

11 . Date of next meeting – Tuesday 2nd December

The speaker would be Oliver Timmis on fundraising.

The meeting ended at 3.30pm

 [SC1]This was what my note said but Sue can clarify.