Your child's education
Education can be a real challenge for young people with M.E. Some have to attend school or higher education on a reduced timetable, some have to be educated away from school – a process known as alternative provision – and some are too unwell to receive any kind of education at all.
No matter what arrangement you end up making for your child, it’s important to maintain good communication with their school. Make sure you have regular meetings with the school and ensure you keep a record of all actions and agreements that are made and confirm these in writing.
If your child has M.E., and has special educational needs (SEN), your local authority has a legal duty to make sure that their needs are identified and met - see below.
You may also find the Health Conditions in School Alliance's free factsheet on school attendance helpful.
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 have also listed some potentially useful organisations in England, Wales, Scotland and Northern Ireland on our Useful contacts page.
What education support is a young person with M.E. entitled to?
Section 19 of the Education Act 1996 (as amended by Section 3 of the Children Schools and Families Act 2010, part 1, section 3) says local authorities must arrange suitable education (or as much education as the child's health condition allows) for children of compulsory school age who, because of illness, would otherwise not receive suitable education. This education must be full-time, or part-time if this is in a child's best interests because of their health needs.
Local authorities should:
- provide such education as soon as it is clear that the child will be away from school for 15 days or more, whether consecutive or cumulative. They should liaise with appropriate medical professionals to ensure minimal delay in arranging appropriate provision for the child
- ensure that the education children receive is of good quality, as defined in the statutory guidance Alternative Provision (2013), allows them to take appropriate qualifications, prevents them from slipping behind their peers in school and allows them to reintegrate successfully back into school as soon as possible
- address the needs of individual children in arranging provision. ‘Hard and fast' rules are inappropriate: they may limit the offer of education to children with a given condition and prevent their access to the right level of educational support which they are well enough to receive. Strict rules that limit the offer of education a child receives may also breach statutory requirements.
Local authorities should not:
- have processes or policies in place which prevent a child from getting the right type of provision and a good education
- withhold or reduce the provision, or type of provision, for a child because of how much it will cost (meeting the child's needs and providing a good education must be the determining factors)
- have policies based upon the percentage of time a child is able to attend school rather than whether the child is receiving a suitable education during that attendance
- have lists of health conditions which dictate whether or not they will arrange education for children or inflexible policies which result in children going without suitable full-time education (or as much education as their health condition allows them to participate in).
Independent and private schools
The Equality Act 2010 applies to ALL education settings, so reasonable adjustments must be made where necessary to avoid young people with M.E. being discriminated against.
If your child has an EHCP (see below), IPSEA advises that "it is the local authority’s duty to ensure the provision set out in the plan is made. However, under section 42(5) of the Children and Families Act 2014, the local authority do not need to do so if you have made 'suitable alternative arrangements'. If the independent school is named in Section I of your child’s plan, and there is no other suitable school which your child could attend, it is likely that the LA remains responsible for your child’s special educational provision and should be paying the fees."
How can schools help support a pupil with M.E.?
A number of organisations have collaborated to design Supporting children with medical needs, a flowchart that aims to help schools identify the steps they should take to make sure that children with medical needs receive the right support. You can also refer to the UK Government's statutory guidance about the support that pupils with medical conditions should receive at school.
Schools should have an Individual Healthcare Plan (IHCP) in place for every child with a long-term health condition. This should be compiled in collaboration with the young person, school, parents/carers and those involved in medical care and treatment. Your and your child can use it to explain to teachers and support staff the impact of M.E. on their daily living, how it affects them, and what may help them access lessons and stay in school. A well-written IHCP can help the school carry out their statutory responsibilities.
For young people up to age 25, an Education, Health and Care Plan (EHCP) can be put in place. A similar document used to be called a Statement of Special Educational Needs. While the name sounds similar to the Individual Healthcare Plan, they are different documents, with a different purpose.
An EHCP is for those who need more support than currently available through an institution’s general support system. For those identified as having special educational needs, ECHPs identify educational, health and social needs and set out the additional support required to meet those needs. It is best to start the EHCP process as early as possible, as it is harder to put one in place when your child has left school.
Our factsheet Education support for pupils with M.E. share information and support on liaising effectively with your child's school, and an overview IHCPs and EHCPs, plus resources and links to template letters to help you move these processes forward.
How can your GP support your child's education?
The 2021 NICE guideline for M.E. advises the following:
"1.9.3 Health and social care professionals should follow the Department for Education's guidance on supporting pupils at school with medical conditions or equivalent statutory guidance.
"1.9.4 Health and social care professionals should work with training and education services to:
- provide information about ME/CFS and the needs and impairments of children and young people with ME/CFS, including the need for a balance of activities in their life
- discuss the child or young person's care and support plan so that everyone has a common understanding of their priorities, hopes and plans
- discuss a flexible approach to training and education – this could include adjustment to the school day, online learning or education at home and using assistive equipment.
"1.9.5 Give parents and carers information about EHCPs [see above] and how to request one from their local authority.
"1.9.6 Advise children and young people with ME/CFS and their parents or carers (as appropriate) that:
- training or education should not be the only activity they undertake
- they should aim to find a balance between the time they spend on education or training, home and family life, and social activities."
Reduced school hours and learning at home
Many young people with M.E. attend school on a part-time basis as appropriate to their needs, eg. late starts, half days and attending only specific lessons. Managing continuity of lessons can be challenging; catching up with missed lessons, getting and completing homework by due date and lack of social time with friends are all challenges that your child may face.
Having regular meetings between parents, teachers and the school to address these needs as they arise is always beneficial for a young person with M.E.
Local authorities (LA) have a home teaching service (they have many names, such as Home and Hospital Teaching, or Community Teaching) to support pupils who cannot attend their mainstream school due to medical needs. For some local authorities you can find details under the education section of your local authority website, however, not all LA’s provide this information or it can be out of date. If this is the case, please contact us.
It is the responsibility of the school to make a referral, supported by medical evidence to show why a child is unable to attend mainstream school. Most home teaching services will provide up to five hours teaching a week (ideally one hour per day), although this can be more or less depending on a child's condition some start with a 5 minute session and slowly increase as the young person improves. Home teachers should liaise closely with a child's school for work and may focus on the core subjects of maths, English and science because of the limited time available. It is not essential to make core subjects a priority, particularly where a child is severely affected or has major cognitive dysfunction (brain fog), art for example may be more appropriate in these cases. This would be detailed and agreed in the IHCP.
When and only if a young person with M.E. is ready to return to school, the home teaching staff should then move the teaching from home to school, with a very carefully planned reintegration back into school. This can be perhaps visiting for breaks and then as appropriate adding one or part of a lesson, perhaps starting with one in the library with a friend.
Our factsheet Exams for pupils with M.E. covers exam accessibility, special considerations, Standard Attainment Tests (SATs), GCSEs and A-levels.