Education

Education can be a real challenge for young people with M.E./CFS; some attending school on a reduced timetable, others following alternative provision and for some, education is withdrawn as they are just too poorly to manage.

We have tried to put as much information on these pages as we can, to guide you through what is available and make you aware of a young person's rights and entitlements.

  • Communication is key: make sure you have regular meetings with school and ensure you keep a record of actions and agreements made
  • If you are thinking about requesting an Education Health and Care plan (see below)  – what needs are not being met by school or the local authority that would help your child continue in education?
  • If not in school – keep links with your friends 
  • Refer to our Education Fact Sheet for practical information on managing your education

If you need more information or support, please call our helpline on 0330 2211223 or email helpline@ayme.org.uk

Individual Healthcare Plans

Individual Healthcare Plans can help schools to effectively support pupils with the medical condition M.E./CFS, so that they can attend school for as much as their medical condition allows. Individual Healthcare Plans are compiled by school professionals in consultation with health professionals, parents/carers and the child/young person.

Example Individual Healthcare Plan

Education, Health and Care Plans

An Education, Health and Care (EHC) plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.  EHC plans identify educational, health and social needs and set out the additional support to meet those needs.

You can ask your local authority to assess the needs of a young person with special educational needs or disabilities, taking into account their individual social environment, care, special educational needs, health and support. This information is then brought together on an Education Health Care Plan (EHCP or EHC plan) which allows decisions and targets to take into account numerous areas that affect a young person's life.

All local council websites will show their 'Local Offer', which is a list of education, health and social care services in their local area provided for children, young people and families who have SEN or disabilities. 

Find out more: 
https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help 

Download the SEND pdf

Living in Scotland?

We receive many calls from families and young people who live in Scotland, and we know that dedicated specialist health services for children and young people with M.E./CFS in Scotland are limited. Many young people have to access vital heath care outside the area in which they live; this can involve travelling great distances and many are left unable to access appropriate care.

We have compiled this short reference leaflet that provides useful information relating to M.E./CFS in Scotland. 

According to theNICE guidelines:

Healthcare professionals should follow the guidance from the Department for Children, Schools and Families on education for children and young people with medical needs, or equivalent statutory guidance.

Healthcare professionals should work closely with social care and education services to ensure a common understanding of the goals of the person with M.E./CFS. The use of a flexible approach should be discussed, including home tuition and use of equipment that allows a gradual reintegration into education.

Time in education should not be used as a sole marker of progress of M.E./CFS, and education should not be the only activity a person undertakes. There should be a balance between time spent attending school or college and doing homework, and time spent on home and social activities.