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Back to school: information, support and advice

September 07, 2020

School is now back in session, though this often means something very different for young people with M.E. and their parents.

We know that, while many will be pleased about schools going back, it can be worrying if you have a child with M.E. Some of you have said you feel hesitant about raising your child's individual needs when it feels like school is so focused on putting COVID-19 restrictions in place.

“Don’t be afraid to ask for the adjustments that they need,” urges Carla Thomas, Action for M.E.’s Family Support and Advocacy Worker. “Your child has rights as someone who has Special Educational Needs. We can support and advise you on this, as well as advocating for you and your child’s needs, wants and wishes with their school. Don’t hesitate to get in touch.”

You can contact Carla via our Crisis, Support and Advocacy Service. Parents who have done this told us:

  • "The help provided was professional and helpful. Carla listened to what I needed to help my son and added her expertise, which was an ideal combination."
  • "Excellent support and advice. Carla was one of the only people who really understood and supported me as a parent of a child with M.E."

Along with one-to-one support from Carla and our team, you can find information for young people and parents on our website, along with free resources you can download and share with the school.

Requesting adjustments at school is most easily done by developing an Individual Healthcare Plan with your child, and meeting with the Special Educational Needs Coordinator and Head of Year to discuss how it would be implemented. It will help to consider the following:

  • Be really clear about what is realistic and can be maintained each day without having an increase in symptoms. It may be beneficial to start with a quieter timetable than you think they can manage and going from there (e.g. starting with just enjoyable lessons which can be less draining)
  • Consider all the factors that impact energy (eg. noise, lights, crowds, travel) and how you can reduce these (eg. leaving lessons early, having a quiet space to engage in with friends)
  • See if your child can continue doing some subjects from home if you feel this could be beneficial.
  • Might online learning or home tutors be plausible? This can be useful if our child can only manage short amounts of time doing cognitive work.

You and your family can always get in touch with us for information and support, and we will do what we can to help. We also have information and support for professionals including our:

  • How can I help? pack for teachers, offering practical adjustments, mind map, case study and tips that have been produced in collaboration with young people with M.E.
  • factsheet for Children and Families Social Workers, offering key information and good practice guidance, as well highlighting how inappropriate safeguarding concerns are made about families with M.E., and how to address this.