AfME survey: Support in School for children with M.E./CFS, closes Mon 18th Feb 2019

https://www.surveymonkey.co.uk/r/GQR9Y8M

https://twitter.com/user/status/1092710290544869376

 

This is piggy backing off of the surveymonkey survey done for the Educate ME project in Scotland. It may be applicable mostly to mildly affected - it can be difficult to articulate a detailed response for many. I'm not sure in the surveymonkey format if you can save and return (I suspect not). There were some good responses demonstrating how children are failed, which when combined with FOIs re attendance fleshes out a picture.

Anonymity was assured if wanted in previous one - I hope that there is also a consent to use anonymous quotes to enable further advocacy, where there is no identifiable info, as testimonies are very powerful.

 

Oh look here comes yet another bus for AfME to throw us under.

 

Given that most safeguarding processes and FII accusations are rooted in school absence, and too few educationalists have any clue about ME this is a potentially useful exercise. To change things, the status quo has to be challenged and enabling children/ young people ( or their parents/ carers) to describe their experience is information gathering that can be used to both raise awareness and advocate for more flexible educational provision.

Key will be how this information is used to challenge the current narrative. I think many of the experiences will be shocking for @Action for M.E. to hear. Perhaps this will hit home that this is not chronic fatigue, that recovery is not as previously intimated ( Keith Geraghty's paper is an excellent exploration of this), and that like adults, most affected children will simply not be able to be at " work", and recovery does not necessarily mean back to where you were before. Educationalists especially need to hear this.

 

Hello. We're gathering this information as part of our work with the Medical Conditions in Schools Alliance. A similar survey is being undertaken by other long-term health condition charities, and we are going to be working with them to analyse the data and show Ofsted and Department of Education (following ongoing meetings with them) of how much more still needs to be done to ensure children with long-term conditions get the right sort of support.

We'll next meet with Ofsted at the end of this month and report on this in the news section of our website, and on social media.

The survey we did for Educate M.E. fed into a separate piece of work: you can read more about this here.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

Thanks Claire. Good to hear that AfME are listening.
The Educate ME group pointed out at the first meeting that if any progress was to be made with education then alliances would need to be formed as ME is not understood at all, and children with other chronic illnesses would face similar issues and have instant understanding and appeal.

Applying prevalence rates of illnesses to rolls was an eye opener for our local council, as was finding out the embarrassingly high proportion of kids with lower attendances as this data is not automatically collated.

Hopefully such initiatives can form part of a coordinated campaign to effect the change that it sorely needed.

The awareness raising session also pointed out the need to allow rest to avoid causing harm and that school may not be possible for many in short or long term.

It was a wake up call for teachers who seem solely focussed on attainment.

Genuine interest and some empathy were generated - a good start

 

Distance education would be wonderful, but apart from a few private providers it is not really an option in uk at moment.
This is what desperately needs to change. There is an obssession about being in school - even when being there makes it unlikely to attain anything.

 

Thank you for this feedback - it's really helpful and I'll share it with my Policy Officer Sam so he can be sure to bear this in mind when analysing and reporting on the survey data.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

Action for M.E.'s response to the Ofsted Consulation
April 08, 2019

full statement here:
https://www.actionforme.org.uk/news/our-response-to-the-ofsted-consulation/

 

Scotland remains a different planet- a shame when it is a national charity.
Not only do we have no ECHPs which means you can be offrolled at 16, but we also have GIRFEC and ACEs which for a misunderstood condition tends to make life that bit trickier.