The mother of a nine-year-old boy with a rare and severe form of epilepsy has told how she fears her son could die after the government announced his supply of a life-changing cannabis medicine from the Netherlands would stop because of Brexit.
Hannah Deacon was given just two weeks notice by the Department of Health and Social Care (DHSC) that due to the end of the transition period “prescriptions issued in the UK can no longer be lawfully dispensed in an EU member state”.
Her campaign to save her son Alfie Dingley’s life in 2017 led to a change in the law enabling the medicine which has seen him seizure free after years of 150 seizures a week, to be prescribed in the UK.
Deacon told the Guardian she is in despair about her child’s future if he cannot get the Bedrolite oil he now takes three times a day.
“They [the DHSC] said they understand our concern but they can’t do anything. Well let me tell them, it is not concerning, it is terrifying.”
She says she wasn’t even told directly by the DHSC that she would no longer get the drug, something she describes as “galling”.
Instead the letter went to pharmacy suppliers around the country who were told to advise on “alternative” prescriptions which would be “clinically appropriate to switch patients on to”.
“I am facing the fact that my son might go into refractory epileptic seizures again which can kill people. That’s how dangerous this is. So to say ‘oh you can swap it for another product, sorry we can’t help’ it is grossly unacceptable. It’s very very dangerous and I’m really frightened about what is going to happen,” she said.
“The letter was sent on the 17 December, so we had no time. We’re very lucky that we were able to secure a couple of months worth of medicine. But that is not long. What makes me really angry is the lack of time we have, the lack of empathy, of care. My son is on a medicine that works for him, why would they take that away?,” she said.
Neurologist Mike Barnes who led the fight with the Home Office to get Bedrolite prescribed for Alfie accused the DHSC of “an astonishing level of ignorance” to think every cannabis product is the same when there are “147 different cannabinoids” in each plant in addition to terpenes which create very specific medical properties.
“Each variety of cannabis is subtly different and you can’t just swap a child from one product to another,” he said.
In desperation Deacon wrote to Boris Johnson begging him to intervene on 29 December.
“I just got an automatic response to say that he doesn’t reply to people that aren’t his constituents, which I find shocking because he is the prime minister,” said Deacon.
Alfie was born in 2011 and was “perfect” she says but when reached four months he was constantly sick.
At eight months he had his first “tonic-clonic seizure” and deteriorated from then losing every skill he had developed. By the time he was five years old he was having up to 150 cluster seizures every week, leaving him in intensive care once a week.
“He would sometimes have these seizures for three or four days and then have a massive inflammatory response with back to back seizures that would mean he was pretty much flying off the bed they were so bad,” his mother said.
He was diagnosed with a rare epilepsy syndrome caused by a mutation in the gene that codes for the protein protocadherin 19, something only nine known boys worldwide have so prognosis and clinical trials of potential drugs was not possible.
She went on to research treatments for epilepsy and found evidence of cannabis being used in 1841 leading her to developments in the Netherlands by a specialist pharmacist Arwin Ramcharan at Transvaal Apotheek.
She moved to the Netherlands in September 2017 and Alfie began the treatment which saw his seizures stop but had to return five months later after money ran out, prompting her battle to get it legalised.
“He has been seizure free for eight months,” she said on Tuesday. And before a tweak in the combination of drugs had an 11-month seizure free stretch before that.
“We don’t have a perfect life and then he has a very difficult genetic epilepsy which causes behaviour problems; he has autism. Life is definitely not rosy but his quality of life is amazing he hasn’t been near a hospital for two years,” she said.
Barnes said the situation was “appalling”. It is “not an exaggeration”, he says, to say that “one or two” of the 42 children on the drug “will die” if they can no longer receive this medicine.
He said the way the DHSC has dealt with the situation was “lazy and flippant” and these families are now in crisis.
Deacon says she would like to speak to Johnson and health secretary Matt Hancock to ask them what are they doing to protect her child.
Ramcharan said: “For me, it is really sad. We are not allowed to send this medicines whatsoever to the UK after Brexit. It is now a battle between the UK government and the Dutch government.”
Deacon said her boy had “a horrendous quality of life, no quality of life” when he was ill, he is now able to attend to school.
“I fought for two and a half years to keep my son well and to get him help on the NHS and it’s a real kick in the teeth, to be honest, for them to just, you know, not do anything to help us,” she said.
“For the prime minister to ignore me, and all the other families, is an utter disgrace,” she said.
The DHSC said: “We sympathise with patients dealing with challenging conditions. There is a range of alternative cannabis-based medicines available to UK patients.
“The decision on what treatments to prescribe for patients is rightly one for clinicians to make, on a case-by-case basis and dependent on the specific needs of the individual. If patients have any concerns, they should discuss them with their doctor.”