Written by Hannah Deacon, mother of Alfie Dingley who receives one of 3 NHS prescriptions for medical cannabis
By the time Alfie was 5 years old, he was having 150 seizures a week in aggressive clusters. His seizures started at 8 months old and got progressively worse with age. In 2016, for example, he went to hospital for treatment 48 times. We had run out of options, so we moved to Holland in 2017 to seek treatment with medical cannabis products. This was not an easy decision but was the best decision we ever made, as medical cannabis gave him – and still gives him – a quality of life we could have only imagined.
In February 2018, we started our media campaign with End Our Pain to achieve a schedule one license for Alfie’s doctors, so they could prescribe the Dutch medication he had used so effectively. I met with the then Prime Minister, Theresa May, in March 2018 who promised to help us by allowing our doctors to apply for a schedule one license f rom the home office. Sadly, our NHS doctor was told he was not allowed to. This is when we met Professor Mike Barnes and our NHS GP was already supportive. They both applied for, and eventually received, a Schedule 1 license on 19th June 2018, allowing them to issue an NHS prescription. Alfie’s prescription for medical cannabis remains NHS funded to this day.
Being honest, to put our family through all we went through was cruel. We were vulnerable and needed help and support. To travel abroad, start a media campaign and stand up to Government was extremely hard, but we felt that if we could do this then it would help our son live his best life.
What started as a fight for our son turned into one for all patients – something we never set out to do – as the reality was that many people were suffering due to not being able to access cannabis medicine. If Alfie could get the help he needed, then surely it meant others should get the same help, as that would only be fair? It would make something that is so sad, which brings so much grief, turn into a positive.
– Hannah Deacon
When Sajid Javid stood up in Parliament on 19th June 2018 and announced that Alfie would receive his license, he also announced a review into medical cannabis. The Chief Medical Officer reported that there was enough evidence to reschedule cannabis products to enable them to be prescribed. On 1st November 2018 the law changed, meaning that medical cannabis products could be prescribed by a specialist doctor.
We were overjoyed that we had been a part of changing this outdated law, that many millions of patients could get the help they needed and, very importantly, move patients (both adults and children) out of the illegal market. The reality however is quite different.
Whilst we see the progress of innovative study Project Twenty21, part of a wider growing private sector, there are no further prescriptions on the NHS, except for Alfie and two other children in Northern Ireland.
This is simply unacceptable.
– Hannah Deacon
This attitude is mainly due to bureaucratic hurdles and the negative attitude of medical groups, such as the British Paediatric Neurology Association and, more recently, NICE. What message is being sent to families like mine – that you do not matter, that the ones who started the fight and got into the media first get help but everyone else must wait?
There is a vast amount of data available showing safety of medical cannabis in epilepsy, and I urge clinicians to do the right thing: focus efforts on giving patients like my son a quality of life that can only be imagined for many.
Cannabis is not a panacea, but it does work with epilepsy in many cases, and Alfie is here today because his doctors did the right thing and put his health and wellbeing first. This means that I am also now able to work, after six years of being a full-time carer. My partner and I can go out for dinner. My daughter does not see her mother cry every day. Our quality of life has immeasurably improved.
This matters more than many of you can imagine, but please, if you have the ability stand up for patients like Alfie, let’s try to improve access to medical cannabis on the NHS and do this together. We can look at evidence differently, fund prescriptions and work through the hurdles – we can help, but what we must not do is ignore this crisis.