From ‘Public Servant', the publication for today's public service leaders, SEPTEMBER 2011.
A blog entry by Public Servant editor DAVID ALLABY in response to a controversial psychiatrist prompted a flood of online comments. Here, David shares his experience as the parent of an ME sufferer son, picking a way through the system – to hit unexpected heights.
REACH FOR THE HEIGHTS…
I like to think my youngest son has always been an achiever: sitting up in a chair for long enough to cope with half an hour or so of home tuition; walking to the corner of the road and gritting it out for the 50-metre journey back; and somehow managing to assemble a handful of GCSEs despite missing five years at secondary school.
As an 11-year-old who was getting stuck into rugby, basketball and water sports, he was admitted to hospital with pneumonia. Recovery seemed to take months. In fact, there was no recovery. The paediatrician frankly did not believe he was still in such a poor state. He had slipped from being weakened by the mycoplasma infection into something every bit as debilitating but even more complex.
His face was grey, deep black rings circled his eyes, his lips turned white with physical effort, he could not tolerate bright sunlight, his temperature fluctuated to extremes, he suffered day-long headaches, his fingernails grew in troughs and ridges, his balance, coordination and sleep patterns were chaotic, and he spoke in a whisper because he could not tolerate noise. His central nervous system was under severe attack. According to one GP who shares similar symptoms, it was like having jet lag multiplied by five. And this was my son's lot for years.
He was, as we began to learn, gripped by a mysterious illness called chronic fatigue syndrome or, more likely, myalgic encephalomyelitis (ME). A much neglected illness, not even recognised by our paediatrician who had my son attempting a shambolic variation of a Morecambe and Wise dance down a hospital corridor, hopping on one leg and with one hand on his head. He suffered heavy repercussions for weeks.
Those were the days of “yuppie flu”. Patients were not believed, there was suspicion that parents might have abused a child showing such symptoms, and the education system fought itself for who would support a child who, at his best, might have made the car journey from home to the school gates but that would be his day's energy expended.
It was the experience of seeing my son living with the effects of ME that prompted me to write of the Public Servant web portal publicservice.co.uk recently in response to the pronouncements of psychiatrist Simon Wessely.
ME suffers are dismayed by the lack of understanding of their illness and its root causes. Despite medical research generally being focused on the causation of diseases, state-backed research into ME has chiefly focused on psychiatry and social influences, and Dr Wessely told Radio 4: “People seem to prefer to be diagnosed with a retrovirus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.” I had to disagree and felt that ME sufferers would take any cure, any relief on offer, and I was moved by the many responses I received.
Although my son eventually found a more open-minded paediatrician, the NHS was mostly hopeless in its approach to ME. We pursued private treatment from specialist osteopath Raymond Perrin and others, including fellow ME sufferer Dr Andy Wright, and there was improvement in my son's condition. After five years he reached the heights of five hours' home tuition a week. Perhaps most crucial was the support of Stockport ME Group, with its lottery-funded nurse who helped my son manage the illness and preserve energy, and in helping his mum to understand ME on many levels.
There's nothing like battling the system for toughening you up. His mum became a formidable campaigner, securing a sixth-form place for him to study A-level maths and sciences, with back-up at home if needed. The school was not impressed but Cheshire education, led by David Cracknell, and backed by home tutor John Davnel, did not want to quash his prospects at 16.
A relapse or two later, Sheffield University also backed his potential after putting him through a foundation year in maths and sciences. This summer he emerged with a master's degree in computer science with first-class honours. Not bad for one who in the past had been prepared to give his all merely to sit for an hour in an examination.
Over the years I had been heartened by one thing: no matter how physically devastating the illness became, my son's mental resolve seemed unshakeable. He was allot to stave off depression when I felt sure that, in his position, I would have been overwhelmed: the loss of childhood, so many opportunities always out of reach, including a teenager's delight in growing up as part of a crowd. Instead, he developed a remarkable maturity, a calm, an unruffled judgement under pressure, a clear identity.
Computers seemed to keep him afloat through the isolation of his illness. While screen time had to be rationed, he kept on learning and a self-taught grasp of the technology carried him confidently into higher education. It was a better of staying well, given his low levels of immunity. The last couple of years have been all-important as he bounced back from cold viruses that once would have floored him.
I wonder about the prospects of other vulnerable young people caught at crucial stages of their lives in the squeeze. My son's job-hunting has brought its surprises, with some blue-chip companies choosing to focus on A-levels – taken when he was unwell – rather than all he's achieved as his health improved. Thankfully, as before, a closed door has not been the end of the story. He starts work in September after receiving some good offers. But first he will try a mountain climbing course. Onward and upward… it seems the natural thing to do.