Cannabis, evidence and policy: The case of Alfie Dingley
Hannah Deacon has answered these questions before.
When she speaks about her son Alfie, diagnosed as a baby with a vanishingly rare form of epilepsy, and the battle of attrition which would eventually lead to his prescription for medical cannabis, she’s fluent about the particulars of a disease in a way that only two sorts of people are: people who have studied it, and people who have lived with it. She recounts the bruising details of Alfie’s story without reliving them. She doesn’t sound uncaring - just tragically practiced. Hannah Deacon has answered these questions before in dozens of interviews - as the media, the public and the government weighed drug policy against the life of her son.
Alfie’s form of epilepsy is particularly vicious, both for the patient and the patient’s family. Though it can present differently in each patient, in Alfie’s case it is marked by clusters of seizures that roll from one into the next for hours. Each attack required hospitalisation, each hospitalisation was followed by days of violent tantrums as Alfie struggled with both his condition and the side-effects of the medications prescribed to treat it.
“From age five until age six… he was in hospital every week,” Deacon says. “At that point he was having up to 150 seizures per cluster. He was receiving up to five doses of intravenous steroids every week to stop the seizures. Those were the only things that worked. But we also had to use a lot of 'rescue' medications, like benzodiazepines, to calm him down while the steroids were working.
“When we were at home, he was very aggressive. He would want to be with me because he was poorly, but he would hit me, scratch me, kick me, punch my face... And try to do the same to his sister, who was only two. So we had to always keep him separate from our daughter; we had to always make sure he was with someone who was responsible to make sure he didn't attack anyone else. I got the brunt of it, because I was the full-time carer; my partner went to work full-time to keep a roof over our head because I couldn't work anymore… It was hugely traumatic for all of the family, for my daughter especially, and for everyone who was trying to help. There was absolutely no quality of life for him, or really for us, as a family, either.”
Deacon was told by one of Alfie’s doctors that the steroid treatments would likely kill him - that he could die of a heart attack or liver failure before he reached his teens. Nevertheless, the treatment he was receiving was what was on offer. It was that impasse that drove Deacon’s search for an alternative, and eventually to medical cannabis.
“I started to research epilepsy treatments on my own... And cannabis kept coming up,” she says. “And initially I just thought, 'Well, cannabis isn't a medicine; it's a recreational drug'. But I kept researching - watching films, joining groups, talking to families all over the world who were using cannabis to treat their children - and realised that while this wasn't some sort of miracle cure, it did give children who were very seriously ill like Alfie a better quality of life. As a parent, I wanted to do anything to help him. Because if I did have to bury my son I needed to stand there and know that I'd done everything in my power to give him the best life. Otherwise, I would never have forgiven myself.”
It was Deacon and her husband's decision to have their son treated with medical cannabis abroad and the subsequent political fight to have the drug prescribed in the UK that made the family a case study in how politics can clash with science. Through crowdfunding and the Twitter account ‘Alfie’s Hope’, the family raised the money to relocate temporarily to Holland, where they had found a doctor willing to take Alfie on as a patient.
As Alfie’s case became a national news story, Deacon found an ally in Professor Mike Barnes, a neurologist and founder of the pro-medical cannabis campaign End Our Pain and The Medical Cannabis Clinicians Society. In 2016, two years before the government would grant a special licence for Alfie’s treatment, Barnes decried the government’s stance on cannabis as “unjust, unfair and unkind,” in a video for End Our Pain, providing a long list of conditions and symptoms for which, he said, more than a million people in the UK were using cannabis illegally as treatment. In the video and in many interviews before and since, Barnes pointed to other countries in Europe and States in the US which have successfully regulated cannabis for medical use.
“I became interested in the medicinal effects of cannabis 20 years ago, when about 50% of my multiple sclerosis clinic patients told me that they were using cannabis,” says Barnes. “Then I was asked four years ago to write a summary of the literature for cannabis efficacy for a government body and became nationally involved from there. Finally I helped Hannah to get a special, first, licence for Alfie.”
Deacon had hoped that Alfie’s story would unbar the gates for medical cannabis in the UK. After Alfie received his medical cannabis, Deacon gave some final interviews on the sea change visible in her son. In October 2018, she told the BBC that Alfie was “amazingly well” and that she had cried through most of a parents’ evening as his teachers expressed astonishment at his change in temperament. But despite this apparent success story, in the following months the availability of cannabis for other patients barely changed. Cannabis did not become a recommended treatment for any disease and many doctors, untrained in the use of cannabis as a medicine, continued to recommend alternatives to patients seeking the drug, citing - again - a lack of evidence of its efficacy.
“We are hampered by dreadful and restrictive guidelines from the Royal College of Physicians and NICE [the National Institute for Health and Care Excellence],” Barnes says. “Our doctors are very conservative and uneducated in cannabis medicine… We know about 38 prescriptions have now been written in the private sector and only two in the NHS. Hopeless.”
Both Deacon and Professor Barnes continue to campaign for the widespread use of medical cannabis. For Barnes, its eventual adoption is inevitable, even if the UK now trails far behind other medically advanced countries.
“The UK is moving slowly in the right direction - very slowly,” says Barnes. ”We need more educated doctors willing to prescribe which will need more and better training. We need better guidelines and a less restrictive supply chain. We will get there, but it will take in my view three years or more for us to catch up with established countries like Germany and Australia.”
Deacon is more scathing of the lack of progress. She still runs the Alfie’s Hope Twitter account, which has become a campaign platform for medical cannabis. The feed is updated regularly, mainly retweeting news, events and testimonies from other parents on the benefits of medical cannabis - and criticisms aimed at government and health bodies accused of blocking its availability. Alfie’s prescription may be secure, but Deacon is keenly aware of the role that the media pressure played in the granting of his special licence, and the injustice that not everyone in Alfie’s situation will receive the same outcome.
“I thought Alfie's case would help thousands of other people, but unfortunately at the moment it seems that the brakes have been firmly put on and the government and NICE and all the other institutions that should be helping people like me and families like mine really don't want to and aren't going to.
“It's very sad that the vulnerabilities of people with disabled children, who need access to medication that's been proven effective around the world, is not just given. It should be given. I'd defy anyone to spend a week as the parent of a child with a condition like Alfie's and disagree.”