On Saturday three years ago, my son Alfie Dingley became the first patient in the UK to receive a permanent license to prescribe medicinal cannabis from the NHS.
This drug saved his life and stopped his severe epileptic seizures for many months. Alfie is having a much healthier, happier time and his quality of life has improved tremendously. However, other children with conditions like Alfie’s still lack access to NHS medication.
Before June 19, 2018, the only way my son could legally get this treatment was through the Netherlands, where we had to live for five months to prove that the drug worked. We worked closely with the End Our Pain campaign group, then MP Nick Hurd, Prime Minister Theresa May and Home Secretary Sajid Javid, who loved Alfie and helped us ensure his safety and health, to pave the way for the law November 2018 after review by Dame Sally Davis, Chief Medical Officer of the NHS.
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It meant doctors on the NHS specialist registry could legally prescribe unlicensed medical cannabis products and potentially save the lives of thousands of children – at least we thought. It quickly became clear that the change in the law was well-intentioned, a complete failure, as families were still being denied access to an NHS prescription at every turn.
To date, only three whole-plant cannabis prescriptions have been issued by the NHS, and every one of these children has had a media campaign to put pressure on the government. For others, the only way to legally access it is privately – at a huge financial cost of thousands of pounds.
In light of this reality, I and several other troubled families met with Health Secretary Matt Hancock in March 2019, where he informed us that the drugs Alfie had been prescribed would be “normally” available at the NHS within a few months . Unfortunately, this did not happen. Mr. Hancock’s promise gave hope to many families who were already suffering terribly and trying to cope with the grief for a life caring for a critically ill child. That is why I now call on the Prime Minister to step in and help.
This dire situation puts power over the welfare of some of these children in the hands of criminals. As a parent, you would do anything to alleviate your child’s suffering and this is what we see: desperate parents forced to buy dangerous products on the black market in order to treat their children with substandard, dangerous and most importantly illegal products.
According to NICE, the body that advises the NHS on medicines, there isn’t enough evidence of pharmaceutical-grade randomized controlled trials (RCTs) to warrant NHS approval. However, cannabis is a medicinal plant with multiple compounds, so RCT data developed for individual compounds cannot collect effective data that can identify the benefits of the whole plant. If this is not widely recognized, we will be stuck forever, blocking access to very poor children who either suffer unnecessarily, pay thousands of pounds privately, or, more worryingly, are dragged onto the black market.
I believe we can solve this mess together. I beg Boris Johnson to listen, not only as our Prime Minister but also as a co-parent. He has the power to correct this.
Medical cannabis treatment saved my son’s life and Brexit means we can no longer access it
There is clear evidence from practice that this drug helps children, for example through Project 2021. So why is NICE not ready to accept this? We know there is a new way to get medicines approved by the Medicines and Health Products Regulatory Agency. Why is this path not available for medicinal cannabis products?
I ask the Prime Minister to discuss how we can end this patient suffering and make access to medical cannabis products a reality in the NHS. I wrote to him in January 2021 on the subject of access to medical cannabis for my son after Brexit. They kindly wrote back to me saying, “The health of children like Alfie is paramount to this government.” Please, Mr. Johnson, keep your word and ensure that there is access to funded treatment that will dramatically improve the lives of these children and their families.
Hannah Deacon is the mother of Alfie Dingley