It’s every mother’s nightmare, having your child diagnosed with a rare condition that doctors can do little about, and it happened to me. My five-year-old son Murray has a rare form of epilepsy called Doose Syndrome which means he lives with up to 600 seizures a day. The first year of his life he did not suffer seizures, the second year he had three seizures. But December 2017 was when our nightmare really began. Murray suffered 12 seizures in a single month and was finally diagnosed with Doose Syndrome.
He was put on anti-epileptic medication that sadly did not help. In fact I believe it made his symptoms worse. In January 2018 he started having up to 12 seizures a day. He has tried every anti-epileptic medication available. He was put on steroids that did not help control his seizures, in fact they did even more damage to him. He put on two stone in weight in just over three months. He was even put on ketamine for a week. He has spent far too many days and nights in a hospital bed shaking. This year, he has only been able to attend school for three weeks.
Like any mother facing a similar situation, I spent hours researching online to see if there was anything I could do for my son. From the testimonies of parents all around the world, it became clear that medicinal cannabis could help my son - but due to the Home Office blocking the mainstream use of medicinal cannabis, I would have to fight tooth and nail to get this for my son. I was lucky. Murray’s incredible NHS neurologists were successful in applying for epidiolex on a strict license. But many parents across the UK were less lucky, and many ordinary people (especially older people) have had to resort to breaking the law to get cannabis oil.
This is despite widespread public support for medicinal cannabis. Research by End Our Pain (using Populus) showed clear public support for medicinal cannabis with 68% backing legalisation. A Sky News Poll showed public support even higher with 82% of the public backing legalisation (up 10% points since 2016) with just 8% of the public disagreeing. The science was clear too with respected international bodies criticising the Home Office’s position with the World Health Organisation condemning the current scheduling of medicinal cannabis as “unjustified”.
Yet, regardless of the scientific evidence that make clear that as many as 20,000 children with epilepsy could be helped and a further 10,000 with Multiple Sclerosis, the Home Office held firm on criminalising medicinal cannabis. Until recently, the Home Office would only give a license for medicinal cannabis “in exceptional circumstances” where a doctor had advised it was “a medical emergency”. The only person in the UK who could grant a short-term license was the Home Secretary, meaning it was up to the whim of a particular politician (not a doctor) to personally sign off life-changing treatment for every patient who needed it. It goes without saying that Murray’s license was incredibly rare.
The Home Office reportedly didn’t even want to allow researchers to investigate the possibility that medicinal cannabis could be helpful. According to End our Pain, only a handful of UK universities were granted a Home Office license for research..
There remains a widespread bias against using THC medicinally, even where it can be seen to help patients. The British Paediatric Neurology Association (BPNA) guidelines are what every Paediatric neurologist refers to. In their guidelines it states that THC is harmful to a growing brain. This urgently needs to be addressed and updated. Small amount of THC (which in some cases is what is needed to break the seizure cycles) is, I believe, not harmful. There are children suffering life threatening seizures as I write this. Surely mitigating this harm is important?
When I launched my 38 Degrees petition, I didn’t see myself as a campaigner. All I wanted was for other children like Murray to get the treatment they deserve. When my petition snowballed to nearly 250,000 signatures, I was delighted - it was more proof to me of the public consensus that has grown around this issue.
Sajid Javid’s announcement means the world to me. For the first time, senior clinicians will be able to prescribe the medicinal cannabis to patients. Sajid Javid has responded to independent evidence from experts and not listened to reactionary voices who have opposed legalisation for quick headlines and ideological reasons. While this is everything I could have hoped for, I still believe as voters we need to continue to put pressure on politicians and civil servants put evidence-based public policy first.
I cannot thank the people who have supported me enough. I just hope that Sajid Javid’s review doesn’t stop at “exceptional cases” for medicinal cannabis but covers the considerable number of people across the UK whose lives would be made better if their doctor could prescribe them cannabis. here are parents giving CBD oil to their children. For some it helps a lot, for others they need the TBC component. I hope that with this rescheduling those parents will now have clinical support in helping their children.