Your child and M.E.
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Your child's education

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).

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.

Schools must have an Individual Healthcare Plan (IHCP) in place for every child with a long-term health condition. For young people up to age 25, an Education, Health and Care Plan (ECHP) can be put in place. We have a free downloadable factsheet on support plans that you may find helpful. It's best to start the EHCP process as early as they can, as it's harder to put one in place when your child has left school.

It's also useful to know that, according to the NICE guideline for M.E. (currently being revised with a new guideline expected April 2021), healthcare professionals should:

  • follow the guidance from the Department for Education on education for children and young people with medical needs, or equivalent statutory guidance
  • work closely with social care and education services to ensure a common understanding of the goals of the person with M.E. The use of a flexible approach should be discussed, including home tuition and use of equipment that allows a gradual reintegration into education
  • not use the amount of time which a young person attends education as the sole marker of progress of M.E. Additionally, 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.

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.

We have a free factsheet on exam accessibility and special considerations that you may find helpful.

What can I do if my child isn't supported at school?

While some schools are very supportive of children and young people with M.E, we know that others get it wrong, not always intentionally. Sometimes this can be resolved by asking for a meeting with the school and having a conversation to address misunderstandings and concerns. In other cases, parents/carers feel that their concerns can only be addressed with a formal complaint. We advise that you contact Action for M.E. first in order to get support with mediation otherwise the complaint can become the focus, and take your valuable energy and time, rather than the focus being your child’s needs. If you feel that you do you need further information and support, please get in touch.

If you have come to this page after the relationship with school has broken down, please read on for general advice on how to make an effective complaint; you can still contact us for information and support.

Government advice sets out three steps for complaining about a school’s provision of support for Special Educational Needs (SEN).

  1. talk to the school’s Special Educational Needs Co-ordinator (SENCo). If you or the school believe that your child is failing to make sufficient progress with the level of support that the school can provide and or is an appropriate level for your child, you can request that your local authority carry out a statutory assessment of your child's SEN.
  2. then follow the school/academy’s complaint’s procedure.
  3. if the issues remain unresolved then you can pursue a complaint with your local authority. If your child attends an academy or free school, or the complaint is not in regards to an Education Health and Care Plan, you should complain to the Education Funding Agency instead.

Your local authority may have more than one stage in its complaint’s procedure. If you are unhappy with the final outcome, or the local authority is taking too long to look into the matter, you can complain to an ombudsman via the Local Government Ombudsman website.

The Local Government Ombudsman (LGO) is a provider of free, independent and impartial service. Part of their role is to consider complaints about the administrative functions of councils and local authorities. The LGO’s role is to evaluate whether or not you may have received a poor service, this might be through delays, poor advice or a failures within the service. If a person has suffered as a result of poor service then the LGO aims to rectify this by providing suitable recommendations.

The LGO is able to investigate a complaint that a council has failed to deal properly with assessing a potential special educational need and issuing an Education Health and Care Plan, or failing to implement an Education Health and Care Plan, or carry out an annual review.

The LGO’s focus is on the administrative processes, not whether or not the council has made the correct decision. Additionally, legislation means that if there is a remedy available through the first stage appeal process of an Education Health and Care Plan (ie. to complain against the local authority’s decision not to assess for an Education Health and Care Plan) then this must be done in place of LGO complaint.

Meetings with the school

All parents or carers of young people with M.E. are likely to have a meeting with their school at some point. These may be with a teacher or a panel of professionals representing the school or Local Authority, with or without medical professionals present. Sometimes parents tell us that they feel like these meetings slip out of their control, leaving them alienated from the decision-making. So, we want to share some tips to help parents feel more confident about the process.

Before the meeting

  • From the beginning of your child’s health issues (even prior to diagnosis), keep all letters and documents relating to your child's education in a ring binder and in date order.
  • Have a bullet point chronology at the front to enable you to find things easily. Letters are proof of what has been agreed. If phone calls are necessary, follow up with a letter or, at least, keep a log of these phone call.
  • Agree your plan of action with your child and have a clear idea of what you and they want you to say or ask for at the meeting. Make bullet point notes to use as a crib sheet. Decide what you are prepared to compromise on and to what degree.
  • Ask your partner or a friend to come with you for support. Discuss with them, in detail, the points you want to make and how they can best support you.
  • Make copies of relevant documents you wish to hand round at the meeting. Choose documents that support the points you want to make. These may include hospital reports, a health diary, a letter or voice recording from your child, and copies of the documents listed at the end of this sheet.
  • Don't forget pen and paper to take notes. It can be difficult talking, listening and note-taking at the same time, so agree with your partner or friend who will be note-taker. With permission of everyone at the meeting, it may be possible to use an audio-recorder.

During the meeting

  • Keep calm. We all get nervous at times like this and being informed and well-prepared will make you feel more confident. Remember, you are the expert here!
  • Ask everyone to introduce themselves, as some people in the room may not have met before.
  • Unless this is a follow-up meeting, the safest starting point is to assume that no-one knows anything about your child or M.E. - but keep it brief and specific to your child. You need to keep your audience alert.
  • Ask questions about anything you don’t understand. Professionals can sometimes use jargon or acronyms that they are familiar with, but you might not be
  • Keep an eye on the time. Don’t let the meeting finish before you have covered the points you want to make. If this happens ask for another meeting. Also be aware they probably can’t run over time, so cover your important points first.
  • If a professional suggests an unreasonable target (e.g. a date for your child to return to school too soon), remind them on health matters you will be guided by the child’s doctor, consultant or therapist.
  • Don’t lose your temper. If the meeting is going wrong, give reasoned counter-arguments and stick to your plan. Save your frustration for later.
  • Remember if at any time you feel you are getting upset or angry you can take time out.
  • Finish the meeting with a summary. This is a verbal agreement of what has been decided and what is to happen next.

After the meeting

  • Write up your notes as soon as you get home or as soon as is practical. Send a copy to the professionals at the meeting and ask them to confirm the content. Tell them that if you don’t hear from them in two weeks you will assume they agree with the notes.
  • At larger meetings, minutes will be taken. Ask for a copy, agreeing a date you will receive them by, and check them for accuracy against your own notes. If you disagree with the content, challenge the minutes with a letter containing your own understanding of the meeting.
  • It can be easy to forget about your needs during this process, but self-case is very important. Now the meeting is over, find time to do something for yourself if you can.