Three years ago, on June 19, nine-year-old Alfie Dingley became the first patient in the UK to receive a permanent license for prescribed medical cannabis from the NHS.
This decision by then Interior Minister Sajid Javid led to a change in law on November 1, 2018, which made it possible for the first time to legally prescribe medical cannabis in the UK.
But for vulnerable families who are already grieving for a seriously ill child, this optimism has now been replaced by utter misery.
To date, these vulnerable children have only private access, and the NHS has only issued three prescriptions for whole-plant cannabis.
Alfie’s mom, Hannah Deacon, sent a letter to Boris Johnson today asking him to meet so they can work together to finally give the NHS proper access to medical cannabis.
Canex has decided to publish Ms. Deacon’s open letter without changes:
“Dear Prime Minister,
Three years ago, on June 19, 2018, my son Alfie Dingley became the first patient in the UK to receive a permanent license to prescribe medical cannabis from the NHS. This drug saved his life and stopped his severe epileptic seizures for many months.
Before that time, the only way my son could legally get this treatment was via the Netherlands, where we had to live for five months in 2017 to prove that the drug worked.
In February 2018, we worked closely with the End Our Pain campaign group, MP Nick Hurd, Prime Minister Theresa May and Interior Minister Sajid Javid, who loved Alfie and helped us ensure his safety and health.
This paved the way for the law change on November 1, 2018, following a review by the NHS Chief Medical Officer Dame Sally Davis. 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. As the reality of this scenario became clear, I and several other troubled families met with Mr Hancock in March 2019, where he told us directly that the drugs that Alfie had been prescribed would be in the NHS “normally” over a period of time. would be available a matter of months.
Unfortunately, this just wasn’t true. 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. To date, these endangered patients have only private access to medical cannabis – and at an enormous financial cost. So far, only three whole-plant cannabis prescriptions have been issued by the NHS, and each and every one of these children has had a media campaign to put pressure on the government.
So why wasn’t the NHS more accommodating?
The answer is, these unlicensed drugs are not commissioned by the NHS. According to NICE, “there is not enough pharmaceutical-grade evidence (randomized controlled trials, RCTs)” to warrant their approval with the NHS. However, cannabis is a medicinal plant with multiple compounds, so RCT data developed for individual compounds cannot collect effective data on the medicinal properties of that plant without losing the benefits of the whole plant. Unless the fact is widely acknowledged, we will be forever locked out of entry to very poor children who are either suffering unnecessarily, paying thousands of pounds privately, or even more worryingly drawn to the black market.
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.
I believe we can solve this mess together. I ask you to listen, not only as our Prime Minister, but also as a co-parent. You and you alone have the power to get this right, so please please take this letter seriously.
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 drugs approved through the MHRA. Why is this path not available for medicinal cannabis products?
Please meet with me to discuss how we can end this suffering from patients, especially children like Alfie, and make access to medical cannabis products a reality in the NHS. There are many ways you can help. I just ask that you listen to me and take the time to help me work with NHS England and NICE to find a solution that will benefit patients. There is enough real-world evidence to move now to observational clinical studies, which was promised in the NHS England review commissioned by Mr Hancock in March 2019. So far, nothing has been changed from the review recommendations.
I wrote to you in January 2021 about access to medical cannabis for my son. 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 “