For any parent hearing their child’s scream as they have a seizure, and not breathing or responding, would be a harsh wake-up call that life is far from normal. My son, Alfie Dingley, was just eight months old when he was diagnosed with a rare form of epilepsy. For us as a family, every day became crisis mode.
For years, he experienced excruciatingly painful seizures, with us never quite knowing which one could be his last. From the day of his diagnosis, we continued to follow doctors’ advice, trying nearly 20 combinations of anti-epilepsy drugs, the ketogenic diet and immune therapy. The only treatment that helped stop his seizures was steroids.
I spent a lot of time researching new treatments for Alfie and it seemed medical cannabis may work for him. It was available legally in many countries throughout the world so why couldn’t Alfie try it? Yet even after Alfie was admitted to hospital in the UK for the 48th time, I was told he would “never” get an NHS prescription for potentially the only treatment that could save his life. I decided to take action and build a medical cannabis campaign.
Determined to find a workable alternative without the potent side effects, we went to Holland to use medical cannabis in 2017. This is when Alfie’s miracle happened. Medical cannabis stopped his seizures so much that his quality of life changed immeasurably.
A face to face meeting with the then UK prime minister Theresa May, led to Mike Barnes, a cannabis expert and campaigner, applying for a license to prescribe on Alfie’s behalf. My son eventually became the first person in the UK to receive a permanent medical cannabis licence on 19 June 2018.
This opened the door for a law change in November of that year, that would enable specialist doctors to finally prescribe cannabis-based medicines where appropriate. For Alfie and many other patients, medical cannabis was life-changing for their quality of life and we hoped the law change signified a momentous shift to a new era of alternative medicine.
The reality is nothing of the sort. Neither the government nor medical profession seem to be able to agree on who should take responsibility for unlocking this stasis. Restrictive guidance from NICE and the British Paediatric Neurology Association and a reluctance from the government means that not one new NHS prescription has been written in the last two years.
Though legal, it is still incredibly hard to get without an expensive private prescription. NHS doctors are reluctant to prescribe medicinal cannabis, citing funding issues and a lack of guidance, leaving parents struggling to pay costs of up to £2,000 a month. These financial pressures have been compounded by the current pandemic.
Restrictions continue to tighten and become saddled with bureaucracy and despite a country with support and positive opinion of medical cannabis, its use still sits in political purgatory and medical no-man’s land.
Now more than ever we need to address a history of prejudice which has curbed research and denied millions of patients’ access to therapies that might help them.
Living alongside coronavirus for the foreseeable future will mean stark choices for these families. We must make sure the needs of those with severe and enduring illnesses are not overlooked. This is about timely and early intervention, prevention and ensuring the right medicine is accessible.
Hannah Deacon is a medical cannabis campaigner and co-founder of Maple Tree Consultancy.
Competing interests: HD is an executive director for the medical cannabis clinician’s society (currently unpaid). She is a medical cannabis campaigner. She works one day a week as a patient access advisor for Lyphe Group. She is a patron of drug science (unpaid.)