Chair: Annette Brooke MP
Vice-Chairs: Countess of Mar, Ian Swales MP
Treasurer: Martin Vickers MP
Secretary: Russell Brown
Meeting held Wednesday 2nd November 2011
Tim Loughton MP, Children’s Minister, and All-Party Parliamentary Group on M.E.
Tim Loughton MP, Children’s Minister (TL)
Annette Brooke MP (AB)
Countess of Mar (CM)
Ian Swales (IS)
Tristana Rodriguez (Secretariat)
Rafi Addlestone (Office of Tim Loughton MP)
Marcus Starling (Office of Tim Loughton MP)
AB opened the meeting by explaining that the All-Party Parliamentary Group on M.E. had reformed in 2010 and was now making a lot of progress. She added that CM also chairs a coalition of M.E. charities called Forward M.E. AB said that, at the last meeting of the APPG with M.E., the Group had heard a presentation on child protection issues from the two major charities helping children and young people with M.E. She said that the evidence she had heard was so alarming that she might not otherwise have believed it.
CM asked TL what he knew about M.E. He responded that he did not know very much. CM explained that there are estimated to be 250,000 people with M.E. in the country, 20% of whom are thought to be children, however the diagnosis is not notifiable and so there are no reliable records. CM said that there are various grades of M.E. and that it can be severe enough to lead to the person being bedbound. Less severe cases which are identified quickly and given the proper advice with regards to pacing have a good chance of recovery, however children often want to keep up with their peers and do not pace themselves.
CM said that she recognised that teachers are under pressure to minimise truancy levels, but that they need a better understanding of M.E. so that children are not labelled as “school refusers” as is often the case currently.
IS presented the results of a survey of children with M.E. conducted by the Tymes Trust:
87% said that they had struggled for recognition of their condition
81% said that they had changed schools
65% had paid for education
63% had left state education
84 % felt bullied by healthcare professionals
CM commented that parents were often falsely accused of Munchausen’s Syndrome by proxy, and more recently were labelled with the term False illness ideation. Such allegations would be permanently documented even if the parents were exonerated.
IS said that there is a lack of awareness in Social Services, NHS and Education. The problem cuts across several Government Departments.
AB said she would like to see hard evidence, in particular on how many children with M.E. have been taken into care. AB is convinced that this is necessary and that the Department of Education need to respond.
CM said that both Mary-Jane Willows of the Association of Young People with M.E.(AYME) and Jane Colby of the Tymes Trust spend a great deal of time representing children and their families.
TL said that he found it most alarming that a significant number of children are taken into care.
IS said that if a child is misunderstood at school they may be forced to carry out tasks which will be detrimental to their health. There are also difficulties for children who have recuperated from M.E. becoming re-integrated with education at sixth-form level.
CM said that the Tymes Trust and AYME both report that levels of understanding seem to be improving within Social Services, but that headteachers continue to be discriminatory with regards to school absence due to M.E.
CM commented that the Scottish Parliament seemed to be much more effective in addressing the issues faced by people with M.E. TL said that he needed to speak to his counterpart there.
The meeting concluded with Mr Loughton saying that he was very happy to take the issues away and discuss them with colleagues and that he was particularly alarmed in response to the issues with safeguarding. He advised the Group that he would write to Ms Brooke to follow up on the outcome of the meeting. He would like to receive more information on the statistics. The Countess of Mar said that she would speak to Mary-Jane Willows and Jane Colby so that they could provide data.