AYME continually pushes at the boundaries of awareness, working at government level and with professional bodies so that the voice of young people with ME/CFS is being heard ever more strongly
The influence which our organisation is able to bring should not be underestimated. Our members are being invited to work with major research bodies and their views are being sought by Government departments and Royal Colleges.
Dept for Education and Skills - Access to Education guidelines<
The Access to Education document published in November 2001 lays down statutory guidelines for schools dealing with children with medical needs. AYME sat on the working group and continues to participate in the committee that monitors the way that LEAs are coping with the legislation.
Dept of Health - Chief Medical Officer's report
AYME was represented at the Children's group of the Chief Medical Officer's working party on ME, by our then paediatric medical advisor, chair of trustees and an AYME member. This report was published in January 2002 and provided best practice guidelines as to how the NHS might best provide care for people with ME/CFS (now superseded by NICE).
Medical Research Council
Following the CMO's report the Dept of Health asked the Medical Research Council to develop a strategy for advancing biomedical and health services research on ME. The MRC visited AYME and some of its members to find out what we saw as priorities for research before publishing its draft strategy in December 2002.
RoyalCollege of Paediatrics and Child Health - Guidelines for Paediatricians
AYME is the only lay representative on a three-year epidemiological study of children with ME, gaining data from GP surgeries across the UK. This will culminate at the end of 2003 with the college publishing guidelines to paediatricians about ME in children.AYME is also chairing a sub-group which is drafting a leaflet for patients and their carers, to be published by the college.
Royal College of Physicians - Education & Training Committee
AYME chair of trustees was invited to assist in the monitoring of RCP training and education of doctors.
Dept of Health - National Service Framework
National Service Frameworks were established to improve NHS services by setting national standards to drive up quality and tackle existing variations in care. AYME was involved in the Long Term Conditions Working Group, which formed part of the Ill Child Module of the Children's National Service Framework.
Dept of Health - Services for ME/CFS
The DoH announced £8.5m for developing new health services at centres in England between 2004 and 2006. AYME was been involved as the voice of young people at discussions about how the money was spent and in setting up the service. AYME is the only national charity still represented on this group and we regularly speak at NHS conferences and events. AYME facilitates a conference every 18 months for specialist NHS services and therapists run by the British Association of CFS/ME (BACME), and has a seat on the executive committee.
Edinburgh Royal Hospital for Sick Children
AYME is working with the Royal Hospital for Sick Children in Edinburgh to improve services for children and young people with ME/CFS. We lectured to all Edinburgh-based community and school doctors at their annual in-house training weekend in August 2003. AYME was advisor to the hospital in its application for an outreach/key worker for children and young people with ME in Edinburgh.