Louis Petit’s neurologist was amazed by the effect medical cannabis had on his seizures and was even willing to prescribe it through the NHS, but at the last moment they withdrew their support out of the blue. The family wants to know why.
Earlier this year, 19-year-old Louis Petit and his mother, Emma Matthews, returned to London after four years living in Holland so Louis could access medical cannabis to treat his drug-resistant epilepsy.
Seizure-free for over a year at the time and about to start Fine Art school, his new neurologist at Kings College NHS Foundation Trust in London was said to be ‘amazed’. It is extremely rare for someone with such severe epilepsy to achieve seizure freedom.
Louis is the only known person in the world with a rare genetic variant on both copies of the NPAS4 gene. Until his early teenage years he lived a normal life. His first seizure came out of the blue while he was on a school trip in 2016, just before his 13th birthday.
As is customary, Louis was prescribed his first anti-epileptic drug before trying a cocktail of pharmaceuticals in various combinations, including carbamazepine, sodium valproate, keppra, lamotrigine, lacosamide, clobazam and phenytoin.
Each time a new one was introduced his seizures changed type and became more frequent.
“Before his epilepsy Louis had always been very sociable, loved sports and was doing well in school. We watched these drugs drain the life from him,” says Emma.
“He found talking increasingly hard and would spend days in bed, too exhausted to get up. We were told debilitating side effects were the price you had to pay because having seizures risks brain damage or death. But on these drugs Louis’ seizures continued and were becoming more severe.
“After two years of worsening seizures his paediatric neurologist told me his epilepsy was very complex and they didn’t know what more they could do for him.”
Louis had his first seizure just before his 13th birthday.
Blank spaces
In 2020, whole exome sequencing revealed Louis’ rare genetic mutation. The family were told that due to his condition, most of the drugs he had been taking had actually exacerbated his seizures and prevented him from processing new memories.
“Whenever I had a seizure I blacked out,” says Louis.
“I woke up knowing I’d had a seizure but was confused nonetheless. My vision would be blurred. I would always have a severe migraine and feel an immense amount of pressure, as if I was deep underwater. My skin would tingle in a slightly painful way and I would never be able to say what I was thinking.
“My mind is full of large blank spaces between brief harrowing memories. Sometimes the memories are quite specific, like when I was coming off clobazam, which is a benzodiazepine and extremely addictive, and phenytoin which also caused terrible withdrawal symptoms. Other memories are more hazy, like being on the drugs, instead of the actual experiences. I remember feeling foggy, less aware of what I was saying, like living in a submerged world.”
Since being prescribed Bedrolite in 2018, Louis was able to reduce his antiepileptic drugs. But withdrawal took months and came with its own challenges.
In May 2020 while reducing his dose of phenytoin, Louis began seizing and was admitted to hospital for three weeks, where he became severely malnourished, before being transferred to a residential clinic to continue weaning off it.
Louis writes about those three months in the clinic: “It’s like I watched a trailer for a short film and got a grasp of what went on during that time, but every part I remember is disconnected.
“I passed in and out of consciousness constantly and had no control over my own life.”
But once free from phenytoin, his cognition improved and he was able to play the guitar again, something he hadn’t done since before he became ill.
Since November 2020, Louis has been seizure-free on a combination of Bedrolite, and the anti-seizure drugs brivaracetam and sodium valproate.
Louis turned to art to express the hallucinations he experienced while withdrawing from drugs
‘It would be unethical to stop the drug’
Recognising improvement in Louis’ condition, his new neurologist in London agreed to prescribe Bedrolite through the NHS.
As Louis’ case was deemed to be ‘clinically exceptional’, in March 2022 the trust submitted an Individual Funding Request (IFR) for the medication to NHS England, approved by the chair of the trust, the chief pharmacist and the complex epilepsy multidisciplinary team.
In it his neurologist wrote: “It is incredibly rare that patients with such high seizure frequency and frequent episodes of status a) respond to medication and b) respond to achieve complete seizure freedom. This outcome is truly remarkable and stopping Bedrolite would pose Louis at such high risk of relapsing into refractory seizures and potentially status epilepticus, that I feel it would be unethical to stop the drug.”
But just before the deadline for the IFR to be considered the trust was informed that NHS England had removed unlicensed cannabidiol products from its commissioning list, meaning that the treatment would not be reimbursed by the commissioner.
The family were informed by their neurologist, who said that this would not be possible as it is ‘not something currently available on the NHS’. Yet since 2018 three children with treatment-resistant epilepsy have been granted NHS prescriptions for medical cannabis, at least one of whom is also taking Bedrolite oil.
Despite this, NHS England and the Department of Health and Social Care still say it is possible to make an IFR if someone is clinically exceptional, like Louis. NHS England told the hospital that the trust could fund it, but the trust said it couldn’t as it would set a precedent.
“When I read that email from his neurologist I couldn’t stop crying, all day, the pain of years of suffering was too much,” says Emma.
“The evidence that Louis needed Bedrolite was clear. His neurologist was very distressed, knowing that withdrawing Bedrolite would be life-threatening. NHS England’s rejection didn’t make sense.”
She adds: “If the list had not been changed they would have found it impossible to reject.”
Artwork by Louis Petit
A change of heart
Eventually in July after months of going back and forth, writing to MPs and arranging a meeting with then Health Secretary Sajid Javid, the family received some good news.
The chief pharmacist had negotiated with the clinical commissioning group (CCG) medicines team and persuaded them to accept the IFR after all.
But an hour later, another email landed, informing them that Louis neurologist was no longer willing to prescribe Bedrolite, ‘due to the lack of any data on long-term medication safety.’
Just months earlier, Louis’ prognosis without Bedrolite had been outlined clearly by the neurologist in the IFR.
“Re-emergence of frequent seizures and status, deterioration in cognitive performance due to seizures and drug side effects, dependence, frequent hospital and ICU admission with related morbidity and mortality, requiring support of carers as an adult,” they had written.
Emma explains: “His neurologist was worried about future legal action because of ‘unknown side effects. The side effects of low-THC products like Bedrolite are nothing compared to the horrific side effects of all the prescribed drugs he’d been given.
“Such an abrupt turnaround made no sense after the previous support of the hospital.”
Artwork by Louis Petit
‘My whole life is in danger’
After the family got the news, Louis wrote to the chief medical officer of the trust himself.
“One thing I have discovered is how people just don’t understand what it’s like to have epilepsy,” he writes.
“We live every day with the fear of more seizures. Even when taking meds that actually work. That fear never goes away. I want to help people understand what it is like to live with epilepsy.
“So many children with complex epilepsy like mine aren’t able to speak for themselves. I have been so lucky to have found medication that works for me. Why would you want to take that away? It doesn’t make any sense at all.”
He adds: “I’m having therapy for my PTSD and that’s really helping but this news has made me so anxious. It just doesn’t feel fair at all, after everything I have been through and everything I have lost. I’m really begging you to fund this medication.
“We should be celebrating and all my doctors should be too. I am now completely well again when they told my mum I would never be seizure-free. Now I am, why wouldn’t anyone want that to continue?”
In September, he wrote to his neurologist asking for them to reconsider, saying he felt ‘anxious about the future’ and the withdrawal of Bedrolite as the family could no longer afford to pay for it privately.
“I feel like my whole life is in danger,” wrote Louis.
“I am acutely aware that if my seizures start again then my quality of life will be very seriously reduced. But, importantly, I am also aware that having seizures causes damage to the brain including cognitive deficits, memory problems and can mean seizure control can be lost permanently. I might lose the ability to study, work, or manage my own affairs. It is likely to have psychiatric and emotional consequences for me – I know it can affect my emotional wellbeing.
“I am struggling to understand how, when weighing up the balance of clinical risks and benefits, you can come to the view that an entirely unknown risk of possible long term problems can legitimately outweigh the known and very likely problems I am likely to suffer when Bedrolite is discontinued.
“Surely the known risks – given they are so severe, logically outweigh the unknown risks – where there is no evidence that there even is any such risks. I have not heard a rational justification for this decision and I am concerned that there are other reasons for it which do not take my best interests into account.”
Louis’ never received a response.
Earlier this month a letter came from the neurologist discharging him from their care. In their explanation they blamed the ‘pressure’ they had experienced to prescribe Bedrolite.
The letter seemingly ignored the fact that they had previously said he could be at risk of frequent seizures, cognitive decline and possible mortality without the medication.
Artwork by Louis Petit
The fight for a normal life
Emma and Louis have now made an official complaint against the hospital trust.
“I’m still reeling when I think about this response,” says Emma.
“They said Louis could die without Berolite, so of course we wanted them to prescribe it.”
She continues: “His Dutch neurologist told me that most adults with epilepsy as severe as Louis’ live their whole lives in an institution. This would cost around £100,000 per year; the annual cost of Bedrolite is £26,000.
“The decision not to prescribe Bedrolite for Louis makes no sense at all.”
While they continue to battle for NHS access, the family must fundraise to be able to afford Louis’ prescription privately.
As well as support from the Medical Cannabis Clinicians Society, Emma has collected a number of letters of support from leading neurologists beyond the cannabis sector.
Consultant neurologist, Dr Michael Gross, writes: “I found it inexorable that there could be any decision that has denied Louis this treatment after so much energy has gone into finding a treatment programme that has generated such benefit.
“In a way Louis should be regarded as a pioneer — someone who has climbed Everest, travelled to the North Pole, or gone to the deepest depths of the ocean in finding a treatment that has been so effective and may benefit others into the future but let it be sufficient that it is giving him at this moment a normal life.”
Artwork by Louis Petit
Art imitating life
In the meantime Louis is now two years seizure free and is excelling at Fine art school, basing much of his work on his own experience.
He is inspired by the likes of Fra Angelico, Bacon, Van Gogh, Turner, Caravaggio. Bosch, Bruegel and Blake, whose work reminds him of his own hallucinations while coming off clobazam, a benzodiazepine harder to withdraw from than heroin.
“I have always enjoyed life and tried to see the positive in any situation. My illness wrecked my education but it gave me something more than I could ever have learnt at school,” Louis writes.
“The only consistent things in my life have been art and music – drawing and painting even when I was too ill to get out of bed. Even when the medication stopped me processing new information I could still draw.”
Artwork by Louis Petit
He continues: “I suffered bizarre hallucinations and this gave me a chance to turn my epilepsy into an advantage by painting what I had seen. Bedridden from exhaustion, I would spend hours painting and drawing and I’ve learnt how the brain functions in the most complex, extraordinary and surprising ways.”
He is also writing a novel loosely based on his experience growing up and wants to be a voice for the thousands of severe epilepsy patients who are nonverbal and unable to express the way the condition affects them.
Louis says: “I’m scared of my own past and feel angry, angry about everything I was forced to go through and furious that I’d been put on so many heavy drugs without anybody thinking twice about what they might do to me.
“My anger increases when I think about the denial of my medical cannabis prescription because of the so-called unknown dangers it might cause, but his drug saved me and has by far the least severe side effects. I’m being denied it purely because it has been stigmatised because of street cannabis and because pharmaceutical companies won’t make any money out of it.”
Louis has now been seizure-free for two years.
Emma is angry too.
“There is something seriously wrong with the treatment of epilepsy patients in this country,” she adds.
“After years of trauma Louis is well and they are threatening to destroy his life again. We haven’t been given a logical reason why they don’t want him to remain on medication which is keeping him well and allowing him to live a happy independent life.
“Denying Louis an NHS prescription doesn’t make any sense. Not clinically, financially or morally.”
Cannabis Health contacted Kings College London NHS Foundation Trust but was told they had no plans to respond.
Donate to Louis and Emma’s JustGiving page here
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