Health CommitteeWritten evidence from the Association of Young People with ME (LTC 92)

1. Submission from the Association of Young People with ME (AYME) representing children and young people with ME/CFS.

2. The main issues faced by children and young people, particularly those who are long-term severely affected in summary are:

(i)Long delays waiting for diagnosis, we regularly receive calls from parents whose children have just been diagnosed after three—five years, when is should be three—five months (NICE Guidance)

(ii)GP’s unaware of referral process—leaving children without treatment, management and care.

(iii)Parents are faced with providing twenty-four hour care, seven days a week often without support.

(iv)No specialist paediatric hospital beds.

(v)Much of the child population with ME/CFS has to rely on out of area referrals which, if moderate to severely affected, they can’t access.

(vi)Poor communication between services that are provided unless the family is fortunate enough to be in an area with a specialist services (only 8 in England—cut from 11)

(vii)Children and families are still faced with threats of safeguarding proceedings where there is no specialist support.

(viii)40% of those who finally get to a clinic have been misdiagnosed.

3. ME/CFS is the main cause of long-term school absence yet children are not able to access the care pathways, services and treatment provided to children with other long-term conditions.

4. Prognosis for children is vastly improved if diagnosed correctly and promptly—this is not happening.

5. Awareness in schools needs to be raised and education and health services need to work together to ensure the estimated 33,000 children and young people (1/100 children in secondary schools) are picked up early and the correct information provided. Where this has been implemented it has been effective but to date this only covers a minority of the estimated population.

16 May 2013