We all know SNP health secretary Humza Yousaf has more on his plate that he can cope with, and in the midst of crisis in Scotland’s NHS it wouldn’t be surprising if what are regarded as non-life-threatening conditions fell down his priority list.
But while illnesses like ME (myalgic encephalomyelitis) or fibromyalgia might not be imminently terminal, they are certainly life-wrecking to the point of utter despair. And for sufferers in the depths of helplessness who can say their lives aren’t at risk?
Last September, Mr Yousaf told the Scottish Parliament that progress was needed in the treatment of ME, saying he did not want to be back in six months without progress being made. No prizes for guessing no progress has been made and when I led a debate about the failure in ME services last week he was nowhere to be seen.
Not for nothing is ME becoming known as Scotland’s forgotten illness.
But the public gallery was full of ME sufferers to hear the discussion, many of whom will have made themselves ill just to get there, and for their pain all they heard were warm words from Public Health Minister Maree Todd, who could only cite an online training course as evidence of any commitment to help.
What those sufferers wanted to hear was a Scottish Government commitment to find £6m for specialist treatment, and with an estimated 21,000 Scottish people living with this devastating and misunderstood condition it’s not as if the need isn’t clear.
MSPs from all parties told of how ME had crushed the lives of constituents, like ultramarathon runner Brighid Ó Dochartaigh who told me she can now barely walk 20 minutes, and Jo Bussell Bruce whose 21-year ordeal has been dismissed as mental illness. “We face systemic bias within the medical community that needs education and consequences,” she said.
Their heart-breaking stories have been echoed by the many messages of thanks I have since received, including one from a former political opponent. When you’ve been desperately ill, political division doesn’t matter so much.
Scotland only has one specialist ME nurse, Keith Anderson, who has told of how ME sufferers are “isolated, ignored and even ridiculed by many, including health professionals, because of poor awareness, poor education, and no training,” and a website is no substitute for proper instruction and ongoing expert care that £6m would buy.
It is more than disappointing that ME diagnosis and management has changed little in recent years despite best practice guidance being available on how to support and treat patients, hundreds of patients are still being encouraged to “push through” their symptoms by well-meaning but ill-informed GPs who unwittingly make things worse.
At least the voices of sufferers were heard last week, and awareness raised for #MEAction Scotland’s campaign, but what’s the odds on any meaningful change in the next six months?
Maybe we should be generous and give Mr Yousaf another six months and see if he is able to report the delivery of genuine progress. That’s twice as long as he gave himself, but like so many other SNP promises, he could have another decade and nothing will change.
So go on, Mr Yousaf, prove me wrong and give ME sufferers the help they deserve.
