I was honoured to recently be invited to speak at the Medicalcannabiz Summit in Malta. The event held some very interesting talks and panels over two days along with an exhibition where many different companies offered a range of services and support to the many stakeholders within the medical cannabis sector.
I was asked to talk about Alfie’s story and the current issues being faced by patients in the UK who wish to access medical cannabis on prescription.
I personally love these occasions, as you get to network with other people within the medical cannabis sector, all of whom have a common goal: to ensure that medicine made from cannabis is accessible to all who need it. For me, the thought of children like my son being able to access the products they need easily with a doctor who knows how to prescribe is the goal that many of us wish to see. These sorts of events help us to network, motivate discussion and enable the connection of industry partners.
When I speak about all major hurdles we came through to achieve Alfie’s license and NHS prescription it makes me realise over and over again how far we have come. When I stepped on the boat with my family to travel to the Hook of Holland to try to save his life, I never dreamed that things may end up as they have. It just shows the amazing things parents can achieve when they have the desire to help their suffering child. As a new mother, I always asked everyone else but myself what was best for my little boy, but over time as he became ill and every treatment failed him, I knew that I had to start listening to myself and every time I tell our story I am so grateful that I did.
I was also lucky enough to take my partner and daughter with me, and we were able to travel with Professor Mike Barnes who was also speaking at the conference. Our family life has never been normal for our daughter, so sometimes when we get the chance, we take her away, so she isn’t the only child in her class who hasn’t been on holiday with her parents. It was tough though not being there with Alfie, he is part of our whole family and when he isn’t there, there’s a big hole. He just doesn’t enjoy being away from home though, he needs routine and to know that he’s going to school the next day.
I will never forget those that are not fortunate enough to have access to an NHS prescription. We worked so hard to achieve what we did for Alfie, but I realise that there are many thousands of children like Alfie in the UK who need urgent access to medical cannabis on prescription. There are many thousands of patients all over the UK who will be driven to the black market if we don’t do all we can to ensure access for all who need medical cannabis on prescription.
I work with 18 families who all have very poorly children. They are fighting every day to access a prescription which every one of them has proved helps their child. Even some of their NHS doctors have tried to secure funding or tried to prescribe and every one of them has been blocked from helping them. Much of this is down to fear from the hierarchy within the hospital trusts who simply don’t understand cannabis as medicine. So today, they continue to fundraise and worry about how they can afford the next month’s supply when they should be enjoying the extra time with their child without seizures, or the time out of hospital or the first time their child has sat unaided.
To hear the patients’ and parents’ voices is so important. We are the link between businesses who wish to help patients, the patients who need help and the doctors who need to know how to access the support they must get to ensure they can prescribe.
I very much appreciate the opportunity to talk at these events as I believe it makes everyone there remember their purpose and why they are in this industry – to help the patients that will benefit from this new and exciting medicine.
*article written by Hannah Deacon