For any parent to hear a child’s horrific scream as they have a seizure, not breathing or responding, is a rude wakeup call that life will be far from normal.
Alfie was just eight months old and diagnosed as suffering from a rare form of epilepsy. For us as a family, every day became crisis mode.
For years, Alfie experienced excruciating painful seizures — up to 150 a day, never quite knowing which one was going to be his last. After he was admitted to hospital for the 48th time and told that he couldn’t have the only treatment that could save his life, I decided to take drastic measures and pursue his only choice: medical cannabis.
The doctor told me I would “never” get a prescription on the NHS for medical cannabis. The government maintained a staunch position that cannabis had no medical value — despite the UK growing and exporting the drug for medicinal use.
Like every parent, the need and desperation to protect my child was ingrained in of me. I began to build a medical cannabis campaign, and finally Alfie 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 later that year, that would allow specialist doctors to prescribe cannabis-based medicines where appropriate.
For Alfie and many other patients, medical cannabis was life-changing in terms of quality of life. And for me and countless other parents with children suffering from rare medical conditions, this change brought hope and signified a momentous shift to a new era of alternative medicine.
Two years on, this optimism has now been replaced by abject despondency. Though medicinal cannabis is legal, it is still very hard to get without an expensive private prescription (Alfie was lucky). NHS doctors are reluctant to prescribe medicinal cannabis, citing lack of guidance and funding issues, leaving parents struggling to pay costs of up to £2,000 a month. These financial pressures have been compounded by the coronavirus crisis.
Restrictions continue to tighten and the process is saddled with bureaucracy. Despite a country awash with positive opinion and support for medical cannabis, its use still sits in political purgatory and medical no-man’s land.
In my letter to the Prime Minister and his cabinet, I implore the government to progress medical cannabis access rather than repress it. We need to address a history of prejudice which has impeded research and denied millions of patients’ access to therapies that might help them.
We are now back in crisis mode. Living alongside Covid-19 for the foreseeable future will mean stark choices for these families. We need to 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.
The plight of our children and need for medical cannabis is so much more than just a political soundbite. It’s time to move it forward.
I implore the government to all come together and finally deliver appropriate access to medical cannabis on the NHS.
Main image credit: Getty