14 June 2014
'If an ME sufferer looks fine, the school assumes they are'
After years struggling with chronic fatigue syndrome, student Rhia-Louise Nixon tells Peter Stanford how specialist support helps keep her schooling on track
Rhia-Louise Nixon estimates that she was absent for between 40 and 60 per cent of her time at secondary school, right up to GCSEs, because of ME (myalgic encephalopathy, more often called chronic fatigue syndrome by doctors).
It began, she recalls, when she was 11, soon after she had started at Hazeley Academy, near her family home in Milton Keynes.
“I got a virus. I didn’t really think much about it at the time. I just assumed I would get better, but then it wouldn’t go away. I lost co-ordination of my body and I even lost my eyesight for a time. My whole brain felt as if it was wrapped in cotton wool.”
It took a year for ME to be diagnosed, and that despite having a supportive family (her mother, Claire-Louise, went down to part-time working to concentrate on helping her daughter), a good local GP and a sympathetic paediatric consultant. Others have to wait much longer, some up to five years.
A good day, says Rhia-Louise, now 17, was when she managed to make it into class, perhaps not for the register, but in time to manage most of her timetable, despite near-constant migraines and the pains in her joints that are dulled by the 11 different sets of pills. And on a bad day?
“My legs would just give way under me and I’d be on the floor and tearful. That’s when I couldn’t even get out of bed.”
She describes it all without a trace of self-pity. Indeed, she is telling me such details only because I’ve asked. She is taking A-levels at Hazeley – a mark, her mother says, of how flexible and encouraging the school has been.
But Rhia-Louise is one of the lucky ones, says Mary-Jane Willows, chief executive of Ayme (Association of Young People with ME). Without a formal diagnosis, other schools can refuse to see prolonged absences “as anything but truanting. Some blame the parents and call in social services.”
Rhia-Louise shakes her head as she listens to what others go through. Warm, articulate and smartly turned out, it wouldn’t cross your mind as she talks that there is anything amiss.
That’s part of the problem, says Cath Kitchen, acting head teacher for Hospital and Outreach Education in Northamptonshire, a specialist support facility for youngsters whose education is being affected by health problems.
“There is a disbelief around ME. If a pupil looks fine, the school assumes they are fine.”
Read more: http://www.telegraph.co.uk/educatio...r-looks-fine-the-school-assumes-they-are.html