The mother of a nine-year-old boy with a rare form of epilepsy has warned her son’s life is at risk because his medical cannabis can no longer be imported from the Netherlands due to Brexit.
Hannah Deacon said she had only learned of the change in policy less than two weeks before the Brexit transition period came to an end at the end of 2020.
She said she now has just six weeks’ supply left of the Bedrolite oil on which her son, Alfie Dingley, depends to keep him free of seizures.
However when she appealed to the Department for Health and Social Care (DHSC) for help, she said they showed a “complete lack of understanding” of his condition.
“For them to brush this off like it doesn’t matter is utterly disgraceful. It does put my son’s life at severe risk,” she told the BBC Radio 4 Today programme.
In 2017, Ms Deacon’s campaigning led to a change in the law which meant that the medicine could be prescribed in the UK.
However, the DHSC has said since Britain finally left the EU single market and customs union, Bedrolite oils dispensed in the Netherlands against UK prescriptions were “no longer an option”.
Ms Deacon said she only learned of the ruling by chance after a letter was sent to stakeholders in the medical cannabis sector on December 17.
“I was only told because someone who knew me was told about this letter, which is utterly disgraceful in itself. The lack of notice is disgraceful also,” she said.
“When we have appealed to the Department of Health they said to us in writing they understand it is concerning but there are other products available, so we should swap products, which shows a complete lack of understanding of refractory epilepsy, a complete lack of empathy.
“Every cannabis product has slight changes in it depending on the plant used to grow it. My son benefits from Bedrolite because of the quality of the product.
“If we move him to another product there is no guarantee that he is going to be safe. That is very dangerous.”
She appealed to Boris Johnson to take up the issue with the Dutch authorities so that supplies of the oil could resume.
“We hear every day he (Mr Johnson) wishes to save lives due to coronavirus. He has it in his power today to save my son’s life and 40 other children who are on this medicine,” she said.
“I want him to show that he wants to talk to the Dutch authorities to find a solution for us and not just to try to brush us under the carpet like we don’t matter.”
A DHSC spokesman said that while they sympathised with patients dealing with “challenging conditions” there was a range of alternative cannabis-based medicines available to UK patients.
“The decision on what treatments to prescribe for patients is rightly one for clinicians to make, on a case-by-case basis and dependent on the specific needs of the individual,” the spokesman said.
“If patients have any concerns, they should discuss them with their doctor.”