Murray Gray’s life was ruined by a form of epilepsy that led to multiple seizures on a daily basis – until they stopped after he started taking medicinal cannabis, writes Christine Jardine.
I had a visitor this week who brightened my day and reminded me again why I got into politics.
For most of the time since I was elected, I have been working with Murray Gray’s mum, Karen, and others to get him the treatment she was convinced would alleviate his rare form of epilepsy. Myoclonic astatic epilepsy, or Doose syndrome, affects only around 1,500 children in the UK. It can be completely debilitating, causing dozens of seizures a day, interrupting schooling and meaning regular hospitalisation.
So many of the conversations I’ve had with Karen have taken place against a background of the unpredictability of his condition, the frequency of his seizures and the frustration of the inability of available medicines to help.
Her greatest fear was that if the situation didn’t change, he might die. But not now. No.
Here in my office was a happy little boy, amusing himself with his Nintendo Switch, chatting excitedly about dinosaurs and looking forward to getting back to school. He didn’t just light up the room. He made everyone in it feel a little bit happier.
The seizures have completely stopped. He no longer has to take steroids and gone is the protective cap that he wore in case of a sudden attack.
Murray’s case was one of those which attracted the massive public support which persuaded the UK Government to legalise medicinal cannabis.
But all of that may be under threat, and his health could go backwards, because neither of his two governments nor the medical profession seem able to agree who should take responsibility for getting him the treatment which has made that difference.
Murray’s astonishing improvement is largely down to his parents’ determination to overcome that political and NHS stasis.
I’ve written before, and spoken in the House of Commons, about the relief so many of us felt when Sajid Javid announced that medicinal cannabis was being decriminalised. So many people – adults and children – would have their constant suffering relieved. That was back in November.
But nine months later, that optimism has been replaced by abject despondency. Every time Karen and I speak, it is off the back of another rejection by the medical professionals or one of our governments at Holyrood or Westminster. They are equally culpable.
Yes medicinal cannabis is now legal – but just try getting a specialist to prescribe it. Murray’s improvement is simply because his mother, like other affected parents, has been prepared to take matters into her own hands.
She has travelled to Amsterdam and brought back medicine prescribed for Murray there, that the medical profession here still will not provide.
To be fair to them, they are caught in the same Catch-22 as Murray. Although cannabis-based products such as Bedrolite and Bedica are now legal and can be prescribed, they are not licensed medicines and there are no prescribing guidelines.
There have been no clinical trials in this country to ensure their safety and efficacy. Under those circumstances doctors are, perhaps understandably, reluctant to prescribe.
For parents like Karen, that is not enough. They see the improvement in their children and they want action. Speaking to her, it is clear she feels she is being passed from pillar to post with nobody prepared to take the difficult decision.
It seems that when medicinal cannabis is discussed the fact that it is based on a controlled substance is the overwhelming problem.
But there is surely a precedent of which we are all, or at least those of us who have ever had surgery or needed pain relief in hospital, only too aware. Morphine.
The omnipresent painkiller has helped many of us – myself included – cope with the pain of major surgery.
It is a derivative of opium, a much stronger, more addictive and in the wrong hands, more dangerous drug, than cannabis.
Surely if we can successfully harness the medical benefits of one, we can also do it with another?
This past week, there was one glimmer of hope for Murray and the many thousands of others who believe medicinal cannabis could be key to ending their pain.
On Thursday the National Institute for Health and Care Excellence (Nice), which is part of the Department of Health in England, released a draft guideline for the prescribing of medicinal cannabis, kicking off a four-week consultation.
It’s not clear exactly what the impact, if any, will be north of the Border where the same role is filled Health Improvement Scotland.
And already the UK-wide MS Society has expressed reservations about the recommendations which, as I understand it, do not seem to tackle the issue of pain relief at all.
At least, however, it is a start.
What we need is to ensure that it doesn’t stop there or get bogged down in political arguments which can now just add to the already lengthy delay in taking action.
If anyone is in any doubt about the value of opening up the availability of medicinal cannabis where it’s appropriate, I would like them to look at some pictures with me.
I would like them to see what Murray had to cope with.
How his Doose syndrome invaded and limited his young life.
Then I’ll show them the pictures of the playful little boy whose beaming smile lit up my office and whose world is now so much happier.
In all of the controversy and debate, it’s the only argument that really matters.