Discussion in 'General ME/CFS News' started by Andy, Feb 5, 2019.
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.
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
I had a look at the survey. It seems to assume that there is only one school to deal with. For children with ME for any length of time, there will probably be more than one school as well as some distance education/tutoring approaches too.
For instance, for my son
Year 1: decreasing attendance over the year until there was no attendance. The year coordinator was unhelpful and accusatory, and bullied my son and I. Only the intervention of our GP stopped the hassling. No subjects completed.
Year 2: home schooling using distance education that we paid for. An expensive option but it worked. Full year of study completed and this was able to be done in just a few hours of study a day. Health improved.
Year 3: return to school full time ( a new school) as a result of a psychologist aggressively encouraging my son to do so. Rapidly became more unwell. Variable reaction from school staff; one was very unhelpful and demanded daily medical certificates to explain absence. When it was explained that the effort of getting to the doctor on one day would result in two more days of absence, it was suggested that we get a doctor to make a home visit each day. This was despite a good letter from the hospital fatigue clinic. Some staff tried to help but son became too sick. Very little attempt made to provide class material when son was away and no options for home tutoring provided. Only completed one subject, with attendance minimal.
Year 4: studied a tertiary qualification part-time; most of it done online but with some work experience. Worked well.
Year 5: completed the tertiary qualification part-time (mostly online) and did a couple of secondary school subjects at local high school known for its flexible approach to course delivery (new school). High school brilliant and accomodating. Worked very well.
Year 6: completed secondary school, completing a nearly full time course of study. Significant absences but school was accommodating.
I guess any brief survey is going to struggle to capture anything from that range of good and bad experiences, but I suspect something like it is the reality for many of us. There's a constant reassessment of what's possible and distance education is very important. The AfME survey doesn't mention distance education at all.
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.
Head of Communications and Engagement
Action for M.E.
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