Supplementing self-help

12th February 2016 at 00:00
How schools can better support children with long-term illnesses

I can’t count the number of times I’ve heard “You can’t do that”. And often it has been me shouting it the loudest. Going against your beliefs is one of the hardest things you can do, so when you start believing that you are incapable of something, that “reality” becomes a part of you.

In Year 7, I developed ME. The following years are a blur of sick bays, consultancy rooms, medication and lessons leaving me behind. There is no cure or treatment for ME; the approach is to blunder through and hope that you make it. The statistics are promising; 98 per cent of adolescents recover, but that little whisper in my mind was always present: “You’ll be that 2 per cent. Someone has to be.”

There are few reliable estimates of the number of children who are affected by ME. According to Dr Neil Abbot, research and operations director at ME Research UK: “It is likely that around 9,000 people under the age of 16 in the UK have this diagnosis.”

ME is hard to diagnose. There’s no test and the symptoms vary between sufferers. For six months, I had no diagnosis, which left me stranded in uncertainty and illness.

This was not understood by my school, who attributed my absence to fear and “encouraged me in”. The school put me on report, sent letters home and categorised me with misbehaving students.

Once you’re labelled, you begin to believe the label – I became scared of school. The diagnosis came, along with a part-time timetable, but I was in a “negative cycle” and my attendance plummeted.

I found a release in writing, and with that came my aspiration to be a writer. I saw a course at Exeter College that was perfect for pursuing this ambition, but GCSEs were fast approaching and my attendance meant that I only met half the criteria – I was absent from school so often that half my class didn’t even know my name.

But with a clear goal in mind – getting on my writing course – I began attending school every day, no matter how I felt.

My teachers helped me catch up on the time that I had missed. My exams arrived. I was terrified; I’d taught myself over a third of each science syllabus and my maths was shaky to say the least. I went through revision book after revision book, exam after exam, but came out standing.

Somehow, the exams boosted my recovery. With ME, often the body is forced to repair. I left secondary school with eight amazing GCSEs, a brilliant friendship group, a stronger faith and a closer relationship with my parents.

Looking back, there are things that both the school and I could have done better. For my part, a key tactic was going in every day, even for only an hour. It sustained my friendships and helped me stay on top of schoolwork.

What can schools do better?

Improving communication – between parents, students, doctors and teachers – would be a great start. Parents and doctors should be involved in discussions about falling attendance for medical reasons and teachers should be informed about students with ME and how best to help them, including setting up an email system so that students can easily access missed work.

Schools could also consider a meeting for parents at the start of Year 7 that details staff contacts beyond the tutor and the support that the school offers, such as the special needs team. The school should also have a clear system that is communicated to students and parents that dictates what happens when long-term illness occurs.

I managed to get on my course at Exeter College and things are going really well. Now people are telling me “you can do this”, and often it is me shouting the loudest. I remember those days when I used to hear the opposite, and it makes me more determined than ever that schools know how to help people like me – and that those students know how to help themselves, too.

Kira Taylor is studying in her first year at Exeter College. @KiraTaylor15

What is ME?

Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities.

Several thousand children and young people in the UK have ME, many becoming ill after an acute, often viral infection. Their quality of life is often lower than in equivalent youngsters with diabetes and asthma, as our funded research has shown. Crucially, the condition is one of the most important single causes of long-term absence from school, so education can be disrupted at a particularly vulnerable time of life.

Kira’s story suggests several practical ways that teachers can help, but central to all these efforts is empathy and understanding. Students with ME should receive the same encouragement and help as those with other physical diseases. Early diagnosis, acceptance and medical support can help many along the path to recovery.

Dr Neil Abbot, ME Research UK meresearch.org.uk

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