Luke O’Donnell worries that cannabis oil is already in short supply for those who need to use it for medicinal reasons
- Patients still struggling to get hold of medical cannabis
- Comes despite law change last year
- Man credits cannabis oil for helping him back to full-time work
This time last year, Luke O’Donnell, 25, was suffering from such severe epilepsy that his day-to-day was hampered by debilitating seizures.
His seizures were so frequent and unpredictable that he became reclusive. He couldn’t work, so he had to claim Universal Credit. But seizures meant he missed Jobcentre appointments, which landed him with sanctions.
In the last six months, his life has turned around. He barely gets a seizure now and when he does, they last for only a couple of minutes.
Luke, from Lincoln, is now working full-time as a telephone adviser for a telecoms company. To him, this transformation is down to one thing: cannabis oil.
However, due to issues with the licensing of the drug, Luke has not been given a prescription. He has managed to source some on his own and takes it, he says, with the blessing of his neurologist.
Although Luke trusts his source, those who are forced to turn to the black market cannot be as confident.
“My neurologist said you need to be careful of the source,” he tells i. “You need to know what fertilisers they are using because some of them can be very dangerous. It’s not a regulated product, you don’t know how pure it is or if someone has adulterated it.
“I trust my source, I don’t know whether other people can trust theirs. That makes me a bit uncomfortable, especially if they’re giving it to their children.”
Given his transformation and reports of how medicinal cannabis has helped others, Luke is baffled as to why the drug is not more readily available for those who really need it.
“Yes it can be prescribed but there’s nothing to prescribe. Ultimately I’d like for there to be some concrete guidelines about the kinds of oils that can be prescribed and where they come from,” he adds.
“At the minute it’s a black market. You get a bottle with a green liquid and that could be anything.”
Luke starting taking cannabis oil about six months ago, dropping a small does under his tongue every day. He went weeks without seizures and when he did have one, it was relatively minor and he only zoned out of consciousness for a few minutes. This marked a huge shift from the “status epilepticus” he used to experience.
“I would be in and out of repeated convulsive seizures. Sometimes I might have a convulsive seizure that lasts for five to 10 minutes. Other times it would last until a paramedic shoved a cannula in me and injected me with Diazepam,” he says.
The nature of his condition made him feel like he could not work. He even had a seizure during a job interview.
On another occasion, Luke wet himself following a “big seizure” on a bus. He says he lost the confidence to go out alone after this.
Luke was given medication, a type of benzodiazepine – a psychoactive drug – but it came with side effects.
“I was given it as a rescue medication but then I was told to take it day-to-day because my epilepsy had gotten that serious. It did let me function but at the same time it’s a psychoactive [substance], so it made me very slow and very apathetic.”
More control over life
With the cannabis oil, the seizures are minimal and there are no side effects. Luke says he has more freedom and control over his life and he does not live in fear of being struck with a seizure.
“I feel a lot more confident about going out. There’s not that worry at the back of my mind: ‘Oh Christ, am I going to have a seizure on a train?’
He says he no longer worries about the impact his seizures will have at him on work.
“Now my absences are really insignificant. I did actually have a seizure [at work] on Saturday. It was very small, two minutes, towards the end of my shift. My boss put me on some admin work and when I went home, I felt fine. Beforehand I would have felt really out of it for about a week. It really messes you up when you have a big seizure.
“My life isn’t ruled by my epilepsy any more. I don’t feel like someone who has severe epilepsy any more.
From Universal Credit to full-time work
“I’ve gone from someone on Universal Credit who is not even able to attend their appointments and has to battle ridiculous sanctions to working full-time and earning a salary in around six months. It’s astonishing.
“Twice a day, I take a drop of this foul tasting oil and I can go to work. I can go out. I can go to Manchester to see my brother, go on a night out. I can go down to London to see my university friends. I’ve got so much more freedom.
“If [cannabis oil] stops me having seizures for long enough I will be able to drive. I should be able to go swimming without having to pre-warn the lifeguard: ‘I’ve got epilepsy, you might have to keen an eye on me.’ It’s quite embarrassing having to do that.”
Luke is excited about his future and wants the same for others who have epilepsy. He is calling on health bodies to put a framework in place which encourages doctors to give out more prescriptions and ensures regulated supplies of medicinal cannabis are available.
The Royal Pharmaceutical Society (RPS) is advising patients to speak to their consultant about medicinal cannabis “rather than purchase an oil independently from an unregulated provider”.
“Recent changes to regulations in the UK mean there is a framework in place for specialist clinicians to treat patients with cannabis-based medicines if they think it appropriate. However, as there are not yet any licensed products available in the UK, which assure quality and efficacy, this is not straightforward and interim guidance from some royal colleges has advised caution,” said Aileen Bryson, deputy director at RPS in Scotland.
“We await NICE guidance in the Autumn to provide further direction,” she added.