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​Educate M.E. awareness raising session South Ayrshire

February 08, 2019

Teachers in South Ayrshire have been learning about the impact of M.E. and how to support young people with the condition, thanks to Action for M.E.’s Educate M.E. project in Scotland.

Funded by the National Lottery Community Fund (formerly known as the Big Lottery Fund), Educate M.E. has been a one-year project set up to develop and deliver awareness-raising sessions in secondary schools in Scotland, co-produced with a steering group of parents of young people with M.E., living in five local authorities.

When speaking about their involvement in the steering group, Caroline said:

"As a parent of a child with M.E. and a former primary teacher I have enjoyed being part of the steering group and am delighted that we are beginning to raise awareness of the illness. At the beginning of her illness it fell upon me to explain the illness to her school and to offer suggestions to help teachers on the best way to support her in the learning she was able to participate in. I am delighted that we are now developing resources to help schools and teachers in a similar way and in this way ensure children and young people with M.E. are supported in their learning and able to fulfil their full potential."

South Ayrshire is the first local authority in Scotland to participate in our awareness-raising sessions targeting educators, to equip them with the tools and information they need to improve the support they offer young people with M.E.

Eight Principal Teachers (Support for Learning) and Inclusion Coordinators attended the two-hour pilot session last week, taking the opportunity to learn about the condition, its impact on young people’s lives, and to provide feedback on the resources developed by the project.

The session was led by Theresa Burns, Scotland Project Co-ordinator; and Avril McLean, Project Worker, using materials developed with our Educate M.E. steering group, and based on the results of our recent survey of children and young people living with M.E. in Scotland.

Using feedback from this session, plus further input from our steering group, we are continuing to refine our Educate M.E. resources for teachers, and will publish these on our website in due course.

As part of the session, we shared what young people in Scotland told us what they want their teachers to better understand, in their words, including:

  • that M.E. is an invisible illness, which fluctuates in nature and can be severe, having a serious impact on every aspect of their lives
  • how M.E. impacts on their ability to learn, and how important it is that they are not forgotten
  • that young people with M.E. still want to learn if they can, to be included and to achieve, and for teachers to explore their role in supporting this.

We used How to Help, a mind map developed for educators by a young person with M.E., based on their experience at school, and provided information about practical adjustments, both of which we positively received. Teachers said these were well put together and could potentially be used to support young people with other chronic conditions.

We also used Christine Miserandino’s The Spoon Theory, adapted to reflect the usual daily activities of a young person of school age, and this was an effective way of demonstrating how difficult it can be for young people with M.E. to get to school. One group of teachers working together on the activity realised it was “not good: we couldn’t make it to school even with skipping a shower” while another said it “highlights the struggle to function and that you don’t have choices.”

None of the teachers present had any experience of supporting a young person with M.E. though this did not prevent them from asking lots of questions about the condition, and suggesting how the session might be improved to be of even more value to their colleagues.

As funding for our Educate M.E. project comes to an end later this month, we are working with the steering group to finalise our resources for teachers, and planning our next steps with them, including leading further training sessions, with two already confirmed.

We are hugely grateful to the children, young people and parents who have shared their experience, time and energy with us to develop Educate M.E. Thank you.

For more information this project, please contact Theresa Burns, Scotland Project Co-ordinator.