Working Groups

AYME continually pushes at the boundaries of awareness, working at government level and with professional bodies.
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.
The voice of young people with ME is being heard ever more strongly.
Jill Moss
Founding Chairman

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. DCSF-sickchildren

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 paediatric medical advisor, chair of trustees and an AYME member. This report was published in January 2002 and provides best practice guidelines as to how the NHS might best provide care for people with ME. www.doh.gov.uk/cmo

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 it's draft strategy in December 2002. http://www.mrc.ac.uk/

Royal College 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. The Children's NSF will develop new national standards for children across the NHS and social services. The recommendations of the Ill Child Module will become mandatory towards the end of 2003 or early 2004. www.doh.gov.uk/nsf

Dept of Health - Services for ME/CFS
The DoH has announced £8.5m for developing new health services at six centres in England between 2004 and 2006. AYME will be involved as the voice of young people at discussions about how the money is spent.

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. We lectured to all Edinburgh-based community and school doctors at their annual in-house training weekend in August 2003.
AYME is advisor to the hospital in its application for an outreach/key worker for children and young people with ME in Edinburgh. The outreach/key worker would link health, education and social services professionals with the parents and young person with ME.
This work could pave the way for better services for young people with ME all over Scotland.

Article last edited on Wednesday 29th July 2009                          Printable Version