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Children and young people

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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 keep up 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.

The information on this page will give you an idea of what’s available for young people with M.E., along with their rights and entitlements, and what to do if you feel your child isn’t getting the support they’re entitled to.

Find out more:

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 Education Authority, or medical professionals. 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

  • Keep all letters and documents relating to your child's education in a ring binder in date order. 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 the phone call.
  • Agree your plan of action with your child, and have a clear idea of what you want to say or ask for at the meeting. Make 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 you will divide this between 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 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 a tape recorder.

During the meeting

  • Keep calm. We all get nervous at times like this and being informed and well-prepared will make you 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. 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.
  • If a professional suggests an unreasonable targets (eg. a date for your child to return to school that feels too soon), then suggest you use these targets at a later date when your child’s health has improved.
  • 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.
  • 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. 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 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.
  • Treat yourself to something special – you deserve it!