By Roland Sebestyén
Three years ago on June 19th, nine-year-old Alfie Dingley became the first patient in the UK to receive a permanent license for prescribed medicinal cannabis on the NHS.
This decision by then Home Secretary Sajid Javid led to a law change on November 1st 2018, which enabled medicinal cannabis to be legally prescribed in the UK for the first time.
Yet for vulnerable families already suffering from the grief of looking after a seriously ill child, this optimism has since been replaced with utter misery.
To this day, only private access is available to these vulnerable children and only three prescriptions for whole-plant cannabis have been issued on the NHS.
Alfie’s mother, Hannah Deacon, has today sent a letter to Boris Johnson, asking him to meet, so they can work together to finally deliver appropriate access to medical cannabis on the NHS.
Canex has decided to publish Ms Deacon’s open letter without edits:
“Dear Prime Minister,
Three years ago, on 19th June 2018, my son Alfie Dingley became the first patient in the UK to receive a permanent license to be prescribed medicinal cannabis on the NHS. This medication saved his life and stopped his severe epileptic seizures for many months at a time.
Before this time, the only way for my son to access this treatment legally was through the Netherlands, where we were forced to live for five months in 2017 to prove the medicine worked.
In February 2018, we worked closely with the campaign group End Our Pain, Nick Hurd MP, Prime Minister Theresa May, and Home Secretary Sajid Javid, who took Alfie to their hearts and helped us secure his safety and health.
This paved the way for the law to be changed on 1st November 2018, following a review by the NHS’s Chief Medical Officer Dame Sally Davis. It meant that doctors on the specialist register would be able to legally prescribe unlicensed medical cannabis products on the NHS and save the lives of potentially thousands of children – or so we thought.
It soon became clear that the legal change was, however, well intentioned, a complete failure, with families still denied access to an NHS prescription at every turn. When the reality of this scenario hit home, I and several other struggling families, met with Mr Hancock in March 2019, where he told us directly that the medicines Alfie had been prescribed would be ‘available in the normal way’ on the NHS within a matter of months.
Sadly, this was simply untrue. Mr Hancock’s promise gave futile hope to many families that were already suffering terribly and trying to cope with the grief of facing a life looking after a seriously ill child. To this day, only private access to medicinal cannabis is available to these vulnerable patients – and at huge financial cost. So far, just three prescriptions for whole plant cannabis have been issued on the NHS, and every single one of these children had a media campaign behind them to put pressure on the government.
So why has the NHS not been more forthcoming?
The answer is that these unlicensed medicines are not commissioned by the NHS. According to NICE there is ‘not enough pharmaceutical grade (randomised controlled trials RCT) evidence’ to warrant their approval on the NHS. Yet cannabis is a multi-compound medicinal plant so RCT data which is designed for single compounds, cannot effectively gather data on the medicinal properties of this plant without losing the benefits of the whole plant. Unless the fact is more widely acknowledged, we will remain forever stuck with access blocked for very poorly children who are either left suffering unnecessarily, forced to pay thousands of pounds privately or even more worrying drawn to the black market.
This abominable situation is putting the power of some of these children’s wellbeing at the hands of criminals. As a parent, you would do anything to ease the suffering of your child and that is what we are seeing: desperate parents forced to purchase dangerous products off the black market to treat their children with substandard, dangerous, and most importantly illegal products.
I believe that together we can sort this mess out. I implore you to listen, not just as our Prime Minister but as a fellow parent. You and you alone have the power to make this right, so I implore you to please take this letter seriously.
There is clear real-world evidence that this medicine is helping children, for instance though Project 2021, so why is NICE not prepared to accept this? We know there is a new pathway to licensing medicines through the MHRA, so why is this pathway not available to medicinal cannabis products?
Please meet with me to discuss how we can stop this suffering of patients especially children like Alfie and make access to medicinal cannabis products on the NHS a reality. There are many ways in which you can help, I just ask you to please listen to me and take the time to help me to work with NHS England and NICE to find a solution which benefits patients. There is enough Real-world evidence to now move to observational clinical trials, something that was promised in the NHS England review which Mr Hancock commissioned in March 2019. So far nothing has been actioned from the review recommendations.
I wrote to you in January 2021 about the issue on medical cannabis access for my son. You kindly wrote back to me stating ‘The health of children like Alfie is of paramount importance to this Government’. Please Mr Johnson stick to your word and ensure there is access to funded treatment that drastically improves the lives of these children and their families.