11th May 2011

FORWARD-ME

Minutes of the meeting held on

Wednesday 11 May 2011

2.00 PM

HOUSE OF LORDS.

1. Present:

Margaret Mar – Chairman

Christine Harrison – BRAME

Bill Kent ReMEmber

Sue Waddle – MERUK

Tristana Rodriguez – Action for M.E.

Sir Peter Spencer – Action for M.E.

Apologies:

Tanya Harrison – BRAME

Jane Colby – TYMES Trust

Janice Kent – ReMEmber

Mary-Jane Willows – AYME

Charles Shepherd – ME Association

2. Arlene Wilkie, Chief Executive of the Neurological Alliance

Ms Wilkie introduced herself as relatively new to the position having only been in post for two months. She had spent this time attending meetings with member organisations and key contacts.

Ms Wilkie gave an introduction to the work of the Neurological Alliance, which is an umbrella organisation consisting of 70-80 national, local and regional organisations. Any neurology organisation could be a member and she noted that Action for M.E. had recently joined. The NA aspired to be firstly the voice of neurology and, secondly to facilitate networking amongst the neurology community. There were 8 million children and adults with neurological conditions in England.

Neurological Alliance had activities in all areas experienced by people with long term conditions, including diagnosis and awareness (a particularly big issue in neurology), living with neurological conditions, and living wills and advance directives.

Another area of work included aiming to influence service provision with a particular focus on the Health and Social Care Bill. They were also involved with the Richmond Group of over 10 national charities including British Heart Foundation, Stroke and Asthma UK who had forthcoming meetings with Andrew Lansley, Secretary of State for Health, and the NHS Futures Forum regarding the Health and Social Care Bill to which Ms Wilkie was able to invite 6-8 attendees.

Further activities included working with the Association of British Neurologists and the Royal College of Physicians who were about to publish a joint report regarding commissioning of adult neurology services at district general hospital level following consultation with members of Neurological Alliance.

Other areas of work included the potential to develop specialist neurological nursing roles, issues around low volume commissioning, research and social care, palliative care.

Neurological Alliance would shortly circulate a position statement which had been developed by the organisation’s policy group for member consultation.

3. Question and answer Session

Peter Spencer asked about Neurological Alliance’s work on welfare benefits.

Ms Wilkie said that this was not currently a focus for Neurological Alliance because of the work of the Disability Benefits Consortium.

Christine Harrison commented that M.E. was often not encompassed within neurological services although the World Health Organisation defined M.E. as a neurological condition.

The Countess of Mar told the Group that at a meeting between Paul Burstow and the All-Party Group on M.E. the previous day, Mr Burstow had advised the APG that he hoped they would work with the Neurological Alliance.

Peter Spencer spoke of the NHS Scotland approach where M.E. was more readily included within the umbrella of neurological conditions. However it was important that, in working with the Neurological Alliance, members of Forward M.E. did not feel that the M.E. specific issues were watered down and so a balance must be struck.

Sue Waddle asked whether and how the Neurological Alliance engaged with neurologists.

Ms Wilkie said that the Association of British Neurologists were members, as were the British Paediatric Neurology Association.

Sue Waddle expressed concerns that there were not enough neurologists in the country and that many did not accept M.E. as a neurological condition.

Christine Harrison said that there are also concerns about the lack of training that doctors have on M.E.

Ms Wilkie said that Dystonia had set up an award scheme to recognise medical students who have made particular efforts for people with dystonia, which she thought was a very good idea.

Ms Wilkie also advised that Neurological Alliance also had a group called the National Leadership Group which was a round table discussion group between the charity sector, the Care Quality Commission, NICE and others.

The Countess of Mar said that the Royal College of Nursing seemed to be more proactive in its training of nurses regarding M.E. Given that most of the treatments available were given by GPs, having a nurse who understood the condition could be very helpful, but this was only a minor step forward.

Peter Spencer mentioned that lots of conditions including Parkinson’s Disease had been affected by low volume commissioning issues. One of the frustrations for the group had been that when they had asked health ministers of previous Governments how they retain accountability for local care delivery when those decisions had been delegated they could not get a satisfactory response. There seemed to be no feedback loop. Local accountability meant that small patient groups could be overlooked. If just left to local market forces, the services could well disappear. To what extent did Ms Wilkie feel able to bring any weight to bear on the definition of the responsibilities NHS Commissioning Board to widen the criteria so that it did admit neurological conditions which would not be protected if left to purely local decision making?

Ms Wilkie said this issue would be taken to future meetings with the NHS Future Forum and Earl Howe, minister for Health in the House of Lords.

Peter Spencer asked Ms Wilkie to insert M.E. along the other conditions as an area with specific problems.

Sue Waddle asked whether higher profile members such as Parkinson’s UK and MS Society had ready access to neurologists.

Ms Wilkie said that the report she mentioned earlier from the Association of British Neurologists talked about a shortage of neurologists in the country.

The Chairman said that she could table some questions on this issue.

Peter Spencer asked for Ms Wilkie’s views on the consultation processes on NHS commissioning.

Ms Wilkie said that she would be clearer about this when she had attended her upcoming meeting with Andrew Lansley and Earl Howe. Her sense from the NHS Future Forums that there was a great deal of work going into consultation that it would be a huge disappointment to the charity sector if the Department of Health did not respond to concerns.

The Chairman said that she would like Forward M.E. to become members of the Neurological Alliance. The Group agreed to pay the fee. They also invited Ms Wilkie to join Forward M.E. which she agreed to do.

4. Minutes of meeting held on 1 March 2011

The minutes were accepted by the Group as a true record.

5. Matters arising

The Chairman told the Group that at a meeting with Paul Burstow, Minister of State (Care Services) on the previous day he was asked about commissioning and service models for M.E. and the proposed closure of the CFS service at Queens’ Hospital, Romford.

Peter Spencer told the group that Action for M.E. had contacted Mr Burstow and the Chief Executive of the Romford service. There may be an opportunity to defend the service and the Group may wish to offer its support.

Sue Waddle asked whether there had been any qualitative research into the efficacy of the unit as many people had reported that they felt worse after attending the unit. Peter Spencer said that he would send the some recent clinical audit results, which were available online. Sue Waddle said that the concern was that this was a very expensive service, whereby some people with M.E. in the country were not even offered tests. The Chairman said that this illustrated the patchiness of services for people with M.E. across the country. Peter Spencer said that the danger was that if the services were lost they would not be replaced.

6. DWP matters:

(i) ESA Work Capability Review – fluctuating conditions

The Chairman told the Group that Dr Charles Shepherd had circulated a copy of the report Work Capability Assessment review: Making it work for fluctuating conditions and that she had written on behalf of the Group to thank Dr Shepherd for the hard work he had done. Professor Harrington had asked to address the Group again and the date for this would be confirmed.

The next step would be for Professor’s own staff to take the report to the Ministers who they hoped would accept its recommendations.

(ii) Jobseekers Allowance (Mandatory Work Activity Scheme) regulations 2011

The Chairman told the Group that she had taken part in a debate on this subject on the previous night and had divided the house.

7. Child protection

The Chairman told the Group that she had raised this with Mr Paul Burstow MP who has agreed to look into it, along with issues with adults with M.E. who were being sectioned under the Mental Capacity Act due to a lack of understanding of the illness.

8. PACE update

The Chairman told the Group that there had been numerous complaints about the PACE Trial to The Lancet. The Group agreed that the Chair would write to the editor on behalf of the Group to express disappointment that he had not responded to the complaints. [A response from the researchers to the Editor of the Lancet as a result of the complaint from Professor Hooper was published on 6 June 2011.] Link

The Chairman commented that she had received a lot of correspondence regarding links between Atos, the DWP and the insurance industry, and was considering challenging this.

9. Adrenal insufficiency

The Chairman circulated copies of a booklet entitled What do I need to know about Adrenal Insufficiency amongst the Group and said that copies would be sent to the office holders of the APPG. The booklet had been tabled by Mrs Jill Mizen because the symptoms of M.E. and adrenal insufficiency were often confused.

10. Any other business

Christine Harrison commented that the Map of Medicine on NHS Choices had a number of errors in relation to M.E. The Chairman said that she would take a look at it.

Bill Kent said that he had attended the executive meeting of BACME recently where possible closure of NHS Services was discussed. Services under threat spanned from Cumbria down to South Devon. The concern was that this situation was likely to get worse given that the Government was looking to make cuts and that M.E. did not have a very loud voice. He was also surprised that it was reported at the meeting that 6,500 had been referred to M.E. services since they started. Mr Kent said that he understands that his local service in Sussex had received 2,000 referrals which suggested that there were places in the country where few or no referrals were made.

Sir Peter Spencer added that only 60% of England was covered by adult M.E. services and only some 15% by children’s services. There were no specialist services in Wales, Northern Ireland or Scotland. The services were already grotesquely undersized for the demand. The services were originally set up as pilot schemes but they had not grown since that time. In Scotland a strategic and methodical needs assessment was done by the Scottish and Public Health Network looking at epidemiology of M.E. region by region, which enabled a proposal for services commissioning to be put forward. This formed the beginning of a conversation which was more finely honed on finding a solution.

Sue Waddle said that an analysis of Read clinical coding across the country would enable decision makers to assess the number of people with M.E. on a geographical basis. Information that she had received suggested that it would cost around £5 in administrative costs for each GP practice to collate the information. Peter Spencer commented that it was a question of will, expertise and resource to produce this work because in the work undertaken for the National Disease Register it became apparent that the Read Code data was very variable across the country. This meant that the same patient might be given different Read Codes depending on who assessed them.

Christine Harrison commented that many of the decisions relating to specialist services would be made locally and so it was important to encourage people to campaign strongly within their local area. Peter Spencer said that it was also important for Forward M.E. to campaign at national level.

Peter Spencer told the Group that on 22 October 2011 Action for M.E. would be holding another conference which would be addressed by Sue Owen, Director General of the Welfare and Wellbeing Group at the DWP, along with updates on the Bio Bank, National Outcomes Database and the M.E. Observatory at the offices of Allen & Overy near Liverpool Street. Action for M.E. would also be holding its AGM there that morning.

The Chairman called the meeting to a close.