Action for M.E. have responded to two consultations highlighting the need for better support to be in place in schools for children and young people with M.E.

The Department for Education have been consulting on their update of Keeping children safe in education, a safeguarding document that provides guidance to teachers and other education professionals. Action for M.E. responded to this consultation highlighting the opportunity to bring in health professionals as early in the safeguarding process as possible, in order to ensure teachers are fully aware of any health conditions, and to speak to both parents and the child involved where appropriate to more fully understand the circumstances of the family.

Our survey of families affected by M.E. found that one in five (22%) had been referred for safeguarding/child protection proceedings, and that 96% felt that a lack of understanding of M.E. negatively impacted on the support that they receive. Of those who were referred, 70% of all cases were dropped within a year and Action for M.E. have not been involved in any cases where the case has been upheld. This demonstrates the need for wider understanding among education professionals of the symptoms of M.E., and the impact that false accusations can have on young people and families.

We have also responded to the government’s green paper on mental health provision in schools, Transforming children and young people’s mental health provision. In this, we stated the need for any new provision to also be accessible to young people with M.E. who are either learning from home or are not able currently able to take part in education. Access to mental health support is vitally important given that this group frequently experience misunderstanding from peers and professionals, and social isolation, which can lead to co-morbid anxiety or depression. We shared the experiences of young people with M.E., including that of one young person who told us:

• “I feel completely alone with handling my CFS – I’ve had to leave school and lost all my friends as a result… My life’s been completely halted and I’m seriously struggling to see any way to get it going again because I can’t find enough help.”

As well as our individual submission, we have contributed to a joint response to this consultation with other M.E. organisations as part of Forward M.E., a coalition of charities convened by the Countess of Mar.

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