For most people, epilepsy is associated with uncontrollable shaking known as fits, but for mum-of-two Elle Humphries*, her condition causes absence seizures, a loss of awareness that results in blanking out, or ‘daydreaming’ as she describes it.
Undiagnosed throughout her childhood, her condition had a significant impact on her education. Although she was able to eventually go to university with ambitions to become a midwife, her GCSEs were severely disrupted due to seizures that could occur every day.
After one of her seizures ended, she would experience nausea and extreme tiredness which caused her to sleep for the rest of the day and often forget what happened the day before.
It was only at university that she finally got her diagnosis. After telling roommates about her “funny turns” they told her to go back to the doctor – it could be epilepsy.
Elle was forced to give up her career ambitions in healthcare and move back to her home town of Antrim, in Northern Ireland.
She was prescribed several different medications in an attempt to manage her condition. Each one stopped working after a time as ‘auras’ started to break through. At this point, Elle was in her late 20s but says she “felt like a 60-year-old woman”.
Discovering medical cannabis
As a young mother-of-two, Elle started looking into alternatives to pharmaceuticals.
She started taking medical cannabis to manage her symptoms and the treatment transformed her quality of life.
“It just opened up my whole world,” she said.
“It helped me every day… I was actually able to function.”
But she couldn’t talk to anybody about the positive impact cannabis was having on her life and her parenting.
“I have two teenage daughters and they’re both very smart and intelligent. They are not the product of a drug appeasing mother,” Elle said.
“They are the product of a loving mother who has done everything to stay well so that I could be my best self for them.”
A battle with the DVA
In November 2020, Northern Ireland’s Driver & Vehicle Agency (DVA) called for a medical review after Elle requested a change to her name on her licence.
She contacted her GP to give permission to share her documents, but discovered that in her notes from earlier that year, a healthcare professional had kept a record of a conversation in which she discussed her cannabis use and its benefits.
The DVA asked her GP to provide clarification as to whether her cannabis use was ongoing, but on two occasions her doctor failed to comply.
As a result, in October 2021, Elle’s licence was revoked, a decision which she immediately appealed and has been battling ever since.
Despite a new GP following the necessary protocol, the DVA insisted that Elle undergo a blood test at a private hospital in Belfast, miles from her home.
Although she was assured that it would be just a physical assessment, she says she was met with “unnerving” questions about her mental health.
They also requested she take a urinalysis, which she was not expecting, and so refused.
“I was not expecting to have my psyche picked apart,” she said.
“It was so traumatic, unexpected and unnecessary. They had my anxiety through the roof in minutes, asking me about my aunt’s mental health and things like that. How is that relevant to my licence?”
Refusing to give up
Elle is still fighting to get her licence back over a year after having it revoked, but she refuses to give up.
“I got myself seizure-free to get my licence,” she said.
“My medication helps me so much, that’s why I refuse to just give up.”
Living without a driving licence has taken a huge toll on Elle and her daughters.
She is paying for a car she isn’t using during a cost-of-living crisis, while supporting her two children who previously relied on their mum to get to school from their home in a rural part of Northern Ireland.
“The lack of my licence doesn’t just impact me, it impacts my children and it’s putting their safety at risk,” said Elle.
“I live in the countryside so I don’t have access to public transport. I am a disabled person and I have pernicious anaemia, which means I fight fatigue every day. I have to get a friend to run my children to the train station at 7am in the morning.
“It’s just layers of stress I don’t need on top of what I already have each day.”
Having recently acquired a medical cannabis prescription legally, the DVA has now requested she complete another DL1 form and medical form, although there is no guarantee her licence will be restored.
The whole experience has left her feeling like a “second-class citizen”, she says.
“It’s as though I’m not worth being heard,” Elle added.
“I’m so tired of being treated like a drug abuser. My knowledge of living with my condition and how I choose to medicate is just ignored. It is dangerous for my care.”
Elle added: “It’s insane that people keep judging me just because I’m using cannabis to keep me well. I have never abused a drug, I don’t even like pharmaceuticals. I should be the walking example of why it needs to be legalised.”
What the current guidelines say
UK law requires that drivers tell the Driver and Vehicle Licensing Agency (DVLA) about any medical condition that could potentially affect their driving.
Apart from conditions where there is clear criteria for driving eligibility based on clinical history, such as epilepsy, it is down to the individual driver to judge whether their ability to drive safely is impaired.
A recent Government report into medical cannabis and road safety, recommended that prescribers should advise their patients on driving while using medical cannabis, as they would with any other medication.
According to the report, the prescribers which were interviewed expressed “little concern that patients would not adhere to the guidelines” and did not see medical cannabis as being inherently different to compliance with other prescription medicines.
While the existing literature on adherence to safe driving guidelines mostly relates to recreational cannabis use, some evidence suggests that adherence may be higher among medical consumers, as their aim is to alleviate symptoms “rather than to get high”.
The need for reform
However, there is arguably a need for reform to the current driving laws, as Elle is far from alone in her battle.
Although medical cannabis was legalised in the UK in 2018, an estimated 1.5 million people still obtain it illicitly for medicinal reasons.
As the prevalence of medical cannabis use grows, an increasing number of patients are risking driving offences due to their cannabis use, even when they have waited hours after their last dose before stepping into the driver’s seat.
Even those with legal prescriptions have faced court hearings despite the law protecting medical cannabis patients from prosecution.
Campaign group Seed Our Future is calling for the removal of THC from Section 5 and reverted to Section 4 of the Road Traffic Act 1988 (RTA), where evidence of impairment would be required to convict.
Currently, any driver who is stopped by the police can expect to be swabbed and if THC is identified, a blood test is enough to secure a conviction, whether the driver is impaired or not.
Studies have shown that the effects of THC have generally gone after four hours when inhaled, longer when orally ingested.
Meanwhile, research conducted by Seed Our Future has found no cases of any serious vehicle accidents which conclusively shows cannabis as the primary cause.
Guy Coxall, the founder of Seed Our Future, has been supporting Elle over the last few months.
“Elle is a prime example of a medical patient who, before cannabis was legally available, has defied the odds of corporate medicine by being seizure free for a decade through self research, trial and error with ratios and growing and utilising home grown medicine,” he commented.
“Proud of her achievements, she told her doctor and was met with sheer discrimination. Not just discrimination but action to have her licence removed.
“Elle is a kind and responsible woman who just wants to be well and able for her teenage children. As for many medical users, life is hard enough and the loss of her licence dramatically impedes on her life quality.
“Now that she has a prescription and the fact that cannabis continues to prevent her seizures, there is no reason for the DVA to cause further delay in returning it.”
The DVA response
A Department for Infrastructure spokesperson said:“ Ms Humphries’ driving licence was revoked in October 2021. When Ms Humphries applied to amend her driving licence in October 2020, the medical form completed by her GP to support this application indicated that Ms Humphries had reported daily use of cannabis in January 2020.
“In order to assess whether Ms Humphries met the relevant standards in relation to medical fitness to drive, our doctors required clarification as to whether the cannabis use was ongoing, or if there had been any period of abstinence and how long that had been for.
“In March 2021, we wrote to Ms Humphries requesting this information from her GP and sent a further request in August 2021. As we did not receive the information requested, her licence was revoked in October 2021 due to non-compliance with our requests for information.
“Following further correspondence, completed medical forms were returned to us in November 2021. Based on the various medical conditions reported, our doctors determined that a consultant’s opinion was required regarding her suitability to hold a driving licence.
“Ms Humphries was therefore referred for a consultancy appointment with 3fivetwo Healthcare who provide the specialist medical assessment service in relation to fitness to drive. Our doctors also requested a drug screen, as it was not clear from the information previously received if the cannabis oil she was using contained THC (tetrahydrocannabinol).
“Ms Humphries did not complete the medical assessments as required, and as a decision could not be taken in respect of her fitness to drive, her application for a driving licence was therefore closed at this stage.
“In June 2022, Ms Humphries advised that she is now taking cannabis prescribed by The Medical Cannabis Clinics in London and she was issued with forms to reapply for her licence. Her application will be progressed as soon as it is received, subject to any further medical enquiries.
“You will appreciate that the law requires us to be satisfied that licences are only issued to drivers who meet the medical standards in relation to fitness to drive and in making our decision we are guided by the assessment of our medical advisors.”
*Elle’s name has been changed to protect her identity
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