Boy at heart of cannabis oil campaign in new fight for life-saving drug

Eight years after winning a battle to get cannabis oil on prescription for their seriously ill son, a Warwickshire family is facing a new fight to keep his supply of the drug.

In 2018, Hannah Deacon took her fight to Downing Street and won the right for her son Alfie, who has epilepsy, to have the medication on the NHS. However she passed away suddenly in 2024.

Now, there is a new threat to the supply of the drug as the company which makes it has gone bankrupt.

Hannah's mum Maggie Deacon has taken up campaigning in her daughter's memory and said : "Alfie wouldn't be with us if he didn't have this medicine, that's the reality."

Before Alfie, now 15, started taking the drug, called Bedrolite, he was having around 150 seizures a week and spent much of his life in hospital. The drug has kept him seizure free for eight years.

Dutch company Bedrocan, was declared bankrupt in October and families have been told supplies could run out within months.

Bedrolite is a specific formulation of cannabis and people who use it say an alternative cannabis oil would not have the same effect.

Maggie from Henley-in-Arden, fears Alfie's life could slip back to how it had been before he started taking it.

She said: "Alfie was in hospital every week for between three and five days.... for the family, it was just living in a crisis. It wasn't a life, it was just awful."

She added it had been proven that "if you stop giving the child medical cannabis, and then start again, sometimes it doesn't work."

"My wonderful grandson might be condemned to mass doses of steroids every week just to give him two or three days respite, no school, no football, " Maggie said.

Emma Matthews' son Louis began having seizures in 2016 aged 12. He's now 23, been seizure-free for six years and is living "a full, happy life".

She fears coming off Bedrolite could kill her son. She said: "It's a cliff-edge condition, if it's stopped, you could die that night."

Matthews from the City of London, said Louis has already tried to come off the oil in the past and his seizures immediately returned.

She said her son was "terrified of dying in the night", adding: "He knows that's a real possibility if you have severe seizures and you don't have the drugs."

Bedrocan told the BBC: "While Bedrocan Netherlands and Bedrocan International were declared bankrupt, there is still Bedrolite inventory available in the Netherlands" and "efforts are underway to secure a restart of the business."

They said they "have been in contact with several UK families" and acknowledge that there is "clearly a great deal of concern about continuity of treatment".

Labour MP for Gower, Tonia Antoniazzi, has led the campaign for medicinal cannabis in parliament and said she had urgently written to the Health Minister.

She said: "We've asked the government to secure the supply of Bedrolite for people like Alfie, because that is going to have huge ramifications to the quality of their life."

She said she wants to see the government do more to allow companies in the UK to produce their own products.

Antoniazzi added: "It's not beyond the wit of government to be able to develop a similar product in the UK."

Both Alfie and Louis' family have been told the inventory of the drug in The Netherlands is being stopped from being exported by the Dutch government to secure supplies for their own citizens.

It is believed the UK has around six months supply of Bedrolite, but it's not clear what will happen when that runs out.

"There is not a reliable source of the medicine in the UK. It's imported", Maggie said.

"So, it could be overnight Alfie and all the other children who are on this medicine will become terribly ill."

MedCan Families Foundation, which supports families of children on medicinal cannabis and the Medical Cannabis Clinicians Society, which advises doctors and pharmacists, have both written to the government urging them to act.

A spokesperson for the Department of Health and Social Care said:

"We recognise the importance of uninterrupted access to medicines for patients with severe, drug-resistant epilepsy, whose conditions are managed using unlicensed cannabis-based products for medicinal use.

"Access will remain in the short term for NHS and private UK patients, with sufficient stock currently available to support continued treatment into the coming months.

"We are continuing to work with the UK supplier and Dutch Government to understand if additional stock can be made available."

The BBC has approached the Dutch Government for comment.

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