A nine-year-old boy has written to the prime minister asking if he can help his brother access medical cannabis.
Thomas Braun lives with his parents and younger brother, Eddie, who has up to 100 seizures a day. “My mum and dad love us both, and they have to help Eddie a lot and sometimes I have to help too,” he wrote in the letter. “They have the added worry of having to find lots of money to pay for his medicine.”
Medical cannabis was legalised in the UK in 2018, but families have previously told HuffPost UK they’ve been refused prescriptions and have had to access the substance abroad, or via expensive private prescriptions.
In April 2021, a cross-party letter from 100 politicians suggested only three NHS prescriptions have been given out since it was legalised.
Thomas’s mum, Ilmarie Braun, says she feels proud of her eldest son for making a stand on behalf of his younger brother.
“Beyond proud, but also conflicted,” she tells HuffPost UK. “Thomas shouldn’t have to worry about this. He’s nine years old. I am constantly proud of him, and what he has done today is incredible. I just wish he didn’t feel he had to try to help in this way. I hope the Prime Minister listens, and is moved to step in and change this impossible situation.”
Thomas delivered his letter alongside Hannah Deacon, who was among those who campaigned for the original law change.
Her son, Alfie Dingley, aged nine, successfully gained a prescription, which she says “saved his life” and stopped his severe epileptic seizures. She’s now calling for an end to the “abominable situation” where parents can’t access treatment for their children, without a nationwide media campaign.
“We are asking the PM to intervene in this terrible situation which means many families can not access medical cannabis on the NHS,” she tells HuffPost UK. “We need him to recognise the issues and help these families now.”
Billy Caldwell, 15, from Co Tyrone in Northern Ireland, has also added his voice to the campaign. Billy is among the few who’ve been prescribed medicinal cannabis, but it took more than five years of campaigning alongside his mum, Charlotte. The teenager, who has epilepsy, celebrated one year of being seizure-free on May 2.
He visited the capital earlier this week after completing a sponsored 1,000-mile walk with his mum. The pair travelled from their home in Co Tyrone to the Department of Health and Social Care to hand-deliver documents about their I Am Billy campaign.
There is currently no ongoing, government-funded clinical research into the efficacy or safety of medical cannabis and the I Am Billy campaign calls for a change to this.
Billy and his mum are raising awareness of the benefits of medical cannabis they’ve experienced and calling for more research to allow other vulnerable patients with medical conditions to receive their medication for free.
The campaign calls for the government to support the first NHS medical cannabis clinical study and for the National Institute for Health Research (NIHR) to fund it.
Over the last 16 days, Billy has walked approximately 162 miles and over 250,000 steps, and supporters of the campaign have joined him along the route.
Dr Leon Barron, a GP who works in Hertfordshire and around London, previously told HuffPost UK he believes one of the major barriers to accessing medical cannabis is that GPs can’t prescribe it, it has to go through a specialist.
“GPs are being left out of the conversation around medical cannabis – but we are the ones dealing with the bulk of queries from patients and are seeing a lot of complex conditions which are difficult to manage,” he said.
“When patients are in pain and have exhausted all other treatments, it can take eight months for them to be seen by a specialist. So it leads to them being prescribed stronger painkillers – including opioids.
“The UK has the fastest growing use of opioids. We know cannabis is safe – particularly in comparison to opioids.”
A Department of Health and Social Care spokesperson tole HuffPost UK: “We recognise the huge challenges faced by children living with rare and hard to treat conditions. The government changed the law to allow specialist doctors to prescribe unlicensed cannabis-based products for medicinal use where it is clinically appropriate and in the best interests of patients.
“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their safety and clinical effectiveness.”