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.
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You and your family can always get in touch with us for information and support: we are here to help. We have also listed some potentially useful organisations in England, Wales, Scotland and Northern Ireland on our Useful contacts page.
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.