Action for M.E.

Accessing education

Initially if you are well enough to still manage some work at home, your parents should request work from the Head of Year. They will co-ordinate the requests for work from different subject tutors. Your work can then either be collected or posted home. To ensure continuing good relations with your teachers, make sure you return your completed work, so they can give you feedback.

Communication and flexibility is important, it can help maintain a good relationship with the school and inform them of your progress.

A good way to stay in touch can be through email or even video conference. Get your parents to ask your Head of Year what is possible at your school.

If you are off school for a few weeks, your parents/ carers should contact your Local Education Authority (LEA) to find out about the procedures for obtaining a Home Tutor or the Visiting Teacher Service. At this stage it is valuable to contact your local Parent Partnership Scheme, who will offer more information and support. If you have a home tutor your school may have a link through its Special Education Needs department. If you are in hospital at any time you will be able to access your education through the hospital school or hospital teaching service.

Having a tutor can help you to feel more a part of things. Keeping up with some schoolwork might mean that you can rejoin your friends in the same year, once you're well enough to return to school.

It's really important that you explain the nature of your illness to your tutor, so that they can make sure you're not doing too much, as this could slow down your recovery or even make you worse. For example:

How your illness changes throughout the day, or from day to day. So you'll have to explain why you feel worse/ better than the day before
How some days you feel bright and others you feel terrible
How the work you are doing needs to be in short sessions and that it should vary i.e. Small bite size sessions of reading, writing, drawing, thinking, speaking - not all the same activity for a whole session
How you might need to eat or drink during a teaching session
How you might need to rest between activities, so you don't use up your energy in one big blast of activity. PACE IT!
Any change in your symptoms over time

Your study time should be built into your daily routine. It can be built up over time to include longer or more frequent sessions. Make sure you know that you can cope with the current level of teaching sessions, by staying at the same level for at least a few weeks, before you consider increasing sessions. When you do increase your level of activity just do it gradually, nothing drastic.

As M.E. is such an unpredictable illness and can affect you for many months or years, it may be the decision of your school to give you more support by issuing an Individual Education Plan, as encouraged by the Special Education Needs Code of Practice.

Read how other young people with M.E. experienced home tuition in Reality Bytes.

Information produced February 2004