Schools should consider ways to “modify and tailor adjustments” for pupils with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), a new government delivery plan has said.
The government said the aim of the interim delivery plan was to “tackle the challenges” faced by people with ME and CFS and “maximise their quality of life”, including the experience of young people in education.
Commenting on the new guidance, Helen Whately, minister of state for social care, said ME and CFS “affect the lives of many children” across the country and make it “difficult” to access education, something she hoped the plan would rectify.
Among the recommendations made for schools - and up for consultation - are suggestions to consider lesson timings that best suit pupils and looking at ways to support energy management, such as by allowing rest breaks or access to a quiet space when required.
Schools should also understand the social and emotional impact of transitioning from home education to school and the potential need for additional support.
Settings should understand that some pupils “may require more support” and pre-recorded lessons delivered at home.
The guidance also instructs schools to consider whether a child or young person’s ME or CFS constitutes a disability.
If the pupil’s ME or CFS does constitute a disability, the guidance says that there are “additional duties on the education setting” and reasonable adjustments should be made.
A tricky balance for schools
Sarah Hannafin, head of policy at the NAHT school leaders’ union, said: “Schools and colleges work hard to ensure all children and young people, including those with ME and CFS, and other medical conditions, are supported to access education and make progress in their learning.”
But Ms Hannafin said that schools ”also need support from specialist services, which is not always available and accessible due to shortages of funding and a lack of awareness and understanding about these conditions and their impact”.
Furthermore, she said that there can often also be ”conflicts for school leaders” who have to try and meet the needs of individual children, while complying with high-stakes accountability measures, including around attendance and attainment.
“These measures are used to judge school effectiveness, but do not also take into account the circumstances facing some children and young people on roll,” she added.
Dr Charles Shepherd, honorary medical adviser to the ME Association and a member of the group who worked on the delivery plan, said many pupils with ME and CFS “face challenges at school and college in relation to modifications to attendance and school work that children with other long-term health conditions do not have to deal with”.
He added: “The Department of Health and Social Care delivery plan places great importance on the need for teachers to know about the symptoms of ME and CFS, how they are likely to impact on a child’s ability to take part in all aspects of education, and how best to help a child with ME or CFS who is able to return to school, or still requires some form of home tuition.”
The consultation closes on 4 October 2023.
