On the 14th of June, they arrived at their destination and were thrilled to find a group of people there to meet them who represented some of the companies that had supported them along the way. When they reached Leicester Square, they were welcomed by companies who came out to show their support in person including representatives from Grow Pharma and Northern Leaf among many others Medicinal. Charlotte expressed how emotional it was to finally meet people in person who she had got to know via email, phone calls and Zoom meetings.
Unfortunately, once they had reached their ultimate destination they were informed that nobody from the government was available to meet with them. After all their efforts this was obviously a huge disappointment, but they were still happy with their achievements and the fact that more and more people were becoming aware of what they were aiming to do. However, as they were returning to their campsite for the night, before returning home the next day, Charlotte’s phone pinged in her pocket and she saw an email which apologized for them being declined a meeting and indicated that a date had been set for them to meet with the Department of Health to allow them to outline their proposals. Their sense of disappointment evaporated into joy and you can imagine that they slept well that night after the excitement had died down
Both the Under Secretary of State and representatives of the Department of Health were set to be present at the meeting and Billy and Charlotte were both excited to present their solutions to the current situation. They were confident that their ideas offer a way to unlock the deadlock of NHS-funded medical cannabis prescription as their foundation will offer to carry out real-world evidence-based studies in order to gather data on the efficacy and safety of cannabis as medicine. Their proposals are supported by NIHR and the meeting aimed to seek approval by MHRA so that the research they conduct will be used as a means of providing crucial information for doctors so that they can feel confident in prescribing to their patients. On top of this, the foundation will use donations to relieve the financial burden that would otherwise be placed on the families of the many thousands of other patients like Billy in the UK and the Channel Islands.
Charlotte plans for their foundation to set up clinics around the UK to offer support and guidance to those who could benefit from a cannabis prescription and she and her team have of partners have been working tirelessly to put things in motion. They are currently convening with almost 40 doctors and researchers who will carry out the studies and process the relevant data and she was keen to stress that “our solution is one where we will work with the Dept. of Health and the relevant government authorities in a collaborative manner, not a confrontational one.”
She went on to explain that: “This is a historic step forward and I am incredibly grateful to Jo Churchill and her officials for agreeing. This solution can and will save lives while gathering much needed data for our wonderful NHS. I know it has saved Billy’s life, and I am confident that these medicines can save many more. I am happy that the proposed real-world evidence studies can potentially bring relief to patients, including more children with childhood epilepsy, who have to endure the financial burden of private prescriptions if they are lucky enough to receive one. I am extremely grateful to the Under Secretary of State for agreeing to meet and grateful also to the campaign funding partners who are doing so much to support our efforts.”
During our conversation I said to Charlotte that this would be a great opportunity for both sides as it would allow the UK to get up-to-speed with the reality of cannabis and its potential to help people without the government having to ‘do the leg work.’ Charlotte then said that her and Billy have “already done the leg work on our way to Westminster, so it makes sense that we keep up the pace. No point in stopping now!”
We caught back up with Charlotte after the meeting had finally taken place and, incredibly, all of their gallant efforts were not in vain. The I Am Billy foundation managed to secure a historic agreement with the DHSC and the NIHR to conduct real-world studies into the safety and efficacy of cannabis based medicines, starting with a focus on patients suffering from Billy’s condition, Refractory Epilepsy. Following this landmark decision, a Conservative MP, Heather Wheeler, explained that she “wholeheartedly welcome the historical news that DHSC has agreed NIHR will work with I am Billy Foundation, investing in Real World Evidence Studies to unlock the deadlock of our wonderful NHS prescribing Cannabis based Medicine. I commend Billy and Charlotte for their determination to make this happen, in particular for groups of patients like Billy with refractory Epilepsy who are already accessing Cannabis based Medicine in the private sector. This non-profit concrete proposal is deliverable and undoubtedly will not only gather much needed data but relieve the financial burden of these chronically ill patients”.
After everything that Charlotte and Billy have been through, this is incredible news. Charlotte went on to express that Billy and I are humbled and filled with gratitude” after their meeting delivered such amazing results. “Everyone agrees that this is a problem we can solve together and I look forward to collaborating with so many fantastic people as we work towards an urgent solution. I am a mother of a patient, with real-life experience of how incredible the effects can be. This medicine has saved Billy’s life and I am confident that these medicines can save many more”.