Summary of APPG meeting: Wednesday 2nd July 2008

Ed: All four transcripts of the presentations on child protection issues given to the July meeting of the APPG on ME are now available on the MEA website:

Ed: This is a personal summary prepared by Dr Charles Shepherd.  These are not the official Minutes of the APPG meeting held on Wednesday 2 July 2008.  If reposting please ensure that it is clear that these are not the Minutes.



This is a summary of key points to emerge from a business meeting and the AGM of the ME All Party Parliamentary Group (APPG). The meeting was held in Committee Room 20 at the House of Commons on Wednesday 2 July 2008 from 1pm to 3pm.

The minutes are being prepared by the ME Association and will be published in due course.



Dr Des Turner MP (Chairman)
Andrew Stunell MP (Vice Chairman)
Tony Wright MP (Vice Chairman)
Dr Ian Gibson (Secretary)

Countess of Mar

Koyes Ahmed (Office of Des Tuner)


Tony Britton (MEA)
Dr Charles Shepherd (MEA)
Sir Peter Spencer (AfME)

National and local charity representatives:

Joy Birdsey (Kent and Sussex Alternative Group)
Jane Colby (Tymes Trust)
Christine Harrison (BRAME)
Bill and Janice Kent (ReMEember)
Diane Newman (Peterborough)
Janet Taylor (Kirklees Independent ME Support Group)
Mary-Jane Willows (AYME)
Nicky Zussman (Kent and Sussex Alternative Group)

Several members of the public were also present

There were apologies from several MPs – including David Drew, Kerry McCarthy and Peter Luff.
Charity apology from Doris Jones (25% Group)

The meeting was chaired by Dr Des Turner. The Countess of Mar took over when MPs had to leave for division bells on the Finance Bill.


The main part of the meeting consisted of presentations on the subject of child protection issues as they affect children with ME/CFS.

Jane Colby and Mary-Jane Willows outlined a long list of concerns relating to the way in which child protection conferences and child protection proceedings in the courts are being initiated and dealt with by social workers, education officials, health professionals and lawyers.

There were also two powerful presentations from parents of children with ME/CFS who had been involved in very distressing cases where suspicions and allegations had turned out to be unwarranted and unproven.

Key points to emerge from all four presentations:

There is still a great deal of professional misunderstanding about the cause/management/prognosis of ME/CFS – despite official reports from the Chief Medical Officer (CMO), the Royal College of Paediatrics and Child Health and NICE. In particular, important recommendations contained in Chapter 5 (section 5.2.8) of the CMO report regarding the need for evidence that is clearly suggestive of harm to be obtained before child protection conferences or care proceedings are pursued was being ignored.

The fact that a child or young person has unexplained medical symptoms, or the parents/carers of the child are exercising selective choice about treatment or education, does not constitute evidence of abuse.

Cases are often being driven by non medical professionals acting on suspicion, or the misguided aim of ‘wanting to speed up the recovery process’ and so ‘get the child back to school away from over-protective parents’. This then has a ripple effect on all other professionals who become involved in the case.

Proceedings are often held in family courts, which do not demand the same level of evidence as the criminal courts.

There is too much secrecy surrounding proceedings in court along with a presumption of guilt rather than innocence.

If child abuse is suspected the process can move very swiftly and parents are left unprepared as to how to deal with the circumstances they find themselves in.

Families are not being informed about their rights or about the procedures that are being followed.

A proper account of the feelings and wishes of the child and what has been happening to them is not being sought. All too often the children are not being listened to.

Specific action that needs to be taken:

The Department of Children, Schools and Families should urgently alert Social Service professionals to the frequent misunderstandings regarding ME/CFS.

A leaflet clarifying procedures that should be adhered to in child protection investigations should be given to any family under suspicion.

Families must be fully informed of their rights and about the procedures being taken.

Families must be informed about organisations that can advise and assist them.

During subsequent discussion the Countess of Mar added that she had been in discussion with the Inspector of Social Services to point out what was happening to children with ME but this had not produced a satisfactory result.

Summing up, Dr Des Turner described the evidence that had been presented by the parents as ‘harrowing’ and noted that ‘problems would not arise if all doctors were aware of the information in the CMO report’. Dr Turner will now make contact with the relevant ministers and pass on details of what had been presented to the APPG. He will also try to set up a ministerial meeting.

A more detailed summary of these presentations can be found on the Tymes Trust website  and in the next AYME magazine.

Personal note: This was the APPG at its best – four excellent presentations covering key issues, personal experiences, and action that needs to be taken. The major defect was that the Department for Children, Schools and Families had been unable to send a minister (Ed Balls), or anyone else to attend the meeting. Clearly, this is an issue that the APPG will need to return to.


Charles Shepherd provided an update on recent developments regarding several issues that have been discussed at previous APPG meetings.


After an exploratory hearing in the High Court lasting nearly two hours, Mr Justice Cranston agreed that the application for a Judicial Review of the NICE guideline on ME/CFS should proceed to a full hearing in the autumn. The legal challenge, which relates to the processes and procedures by which NICE produced their 2007 guideline, has been initiated by two named people with ME and one unnamed person.

Summary of the High Court hearing:


During House of Lords questions to Lord Darzi on 2 June the Countess of Mar asked whether his NHS review would include consideration of ME/CFS as a long term neurological condition. In response Lord Darzi stated that:

The long term conditions pathway is one of the care pathways that strategic health authorities are examining as part of the NHS next stage review. The review will increase awareness and ensure better care for people with ME/CFS and will help to support local delivery of the National Service Framework for long-term neurological conditions.

In response to a further question from Baroness Howe, Lord Darzi stated that the Government believes that ME/CFS should be classified as a neurological illness and that he would Encourage the Royal College of General Practitioners to take account of the WHO classification. There were also questions from Lords Swinfen, Elystan-Morgan and Earl Howe on children with ME and care proceedings, and one on medical education from Baroness Tonge.

Summary and transcripts:


The MEA has been in correspondence with Dr Bill Reith at the RCGP regarding their decision to include CFS (using the neurological Read Code F286) as a mental health disorder in a curriculum training document. The RCGP has agreed to examine this decision but say that their administrative processes mean that no change in position could be taken and confirmed before January 2009. The MEA is trying to fix a meeting to discuss the whole issue of ME/CFS with Dr Reith.

Exchange of correspondence with MEA:


At the last APPG meeting Ann Keen, Parliamentary Under Secretary at the DoH, agreed to try and arrange a meeting between Lord Darzi, APPG members and charity representatives. Despite several approaches to Lord Darzi, no such meeting materialised.

Lord Darzi published his NHS review on Monday 30 June. Three specific recommendations that could be relevant to people with ME/CFS:

a  All patients with long-term conditions will have personal care plans.
b  Five thousand of those with long-term conditions will have pilot personal care budgets
c  NICE appraisals of new drugs and treatments will be speeded up so they take a maximum of six months rather than two years


Christine Harrison updated the Group on developments and stressed the need for local groups to be proactive in making their views known to SHAs.


Following a joint initiative involving 23 local and national charities/organisations, Dr Ira Madan, who came to the APPG last year, has now produced revised versions of all three leaflets. These are now up on the NHS Plus website. Although not perfect the revision has incorporated a significant number of changes that were being requested by the charities and represent a significant change in content.

NHS Plus website:


It is now almost a year since this revised medical guidance was published by the DWP. Without any up to date figures on numbers of refusals, appeals taking place, and successful appeals it is impossible to objectively assess the result of these changes. The MEA continues to receive anecdotal reports of people being refused DLA – both existing and new applications – but there has been a reduction in the overall number of calls and emails relating to DLA problems during 2008.

One example of correspondence to the MEA will be made available to the meeting and part of the letter read out – Until May 2008 I was on high rate mobility and medium rate care. Now I have been told I will get nothing – from someone who had lost both components of his existing DLA Award. This person also reported that after being placed on a graded exercise programme at a specialist NHS ME/CFS service this had severely increased the bone, muscle and joint pain because of too much activity. As a consequence of the way I was treated I refused to attend this service any more.

Other charity representatives reported similar experiences with DLA problems and Sir Peter Spencer referred to the large number of people still having to go to appeal, where they were often successful, in the AfME patient survey.


a  Dr Des Turner proposed that the APPG. should set up a group to conduct an enquiry into NHS service provision (ie assessment, diagnosis and management) for people with ME/CFS – a process that would involve taking oral evidence from all involved. A meeting with charity representatives to take this proposal forward will hopefully be arranged before the end of July.
b  The Countess of Mar proposed that there should be a meeting of all the main ME/CFS charities to establish where they agree and disagree on key issues in the hope that common ground could be established along with closer co-operation on issues where agreement exists. The Countess of Mar offered to chair this meeting.
c  It was decided to defer an AOB item from Diane Newman on the Mental Capacity Bill to the next meeting.


Provisionally fixed for Wednesday 8 October 2008 in Committee Room 20, House of Commons Main subject and speaker/s to be arranged.



All current officers were reappointed.

David Amess MP (Treasurer) was unable to attend.

Summary prepared by Dr Charles Shepherd, Hon Medical Adviser, ME Association



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