Plea for more families to get prescription medicinal cannabis

  • Published
Alfie with his mum Hannah DeaconImage source, clc portraits/Claire Carrol
Image caption,

Alfie, 10, used to suffer up to 30 violent epileptic seizures a day.

A mother who fought to get medicinal cannabis on the NHS to help her son's epilepsy is urging the government to make sure more families benefit.

Hannah Deacon's son Alfie was the first UK NHS patient given a long-term licence for medicinal cannabis in 2018.

Since then three NHS prescriptions have been issued, campaigners say.

Ms Deacon, of Kenilworth, Warwickshire, said Health Secretary Sajid Javid has the responsibility to sort the problem out.

She and campaign group End Our Pain lobbied for action on Tuesday.

Alfie's epileptic seizures improved since using the drug, Ms Deacon said, and it has been 500 days since his last seizure.

"It's so important that any other child like Alfie gets the chance to access this product as well," she said.

"Others remain blocked from NHS access to this vital medicine and are at emotional and financial breaking point."

Image caption,

End our Pain held a lobby in London

The law was changed in 2018 to allow medicinal cannabis to be prescribed on the NHS in "exceptional" cases.

At the time Sajid Javid, then home secretary, said: "Recent cases involving sick children made it clear to me that our position on cannabis-related medicinal products was not satisfactory."

Ms Deacon thanked him for doing the right thing for her family, but said: "Now as the Health Secretary he really does have the responsibility to sort this problem out. He knows this is a problem."

Ms Deacon said she has asked on "numerous occasions" for a meeting with Mr Javid and said she would continue to campaign "until this mess is sorted out".

A Department of Health and Social Care spokesperson said: "Our sympathies are with all patients and families dealing with rare and hard to treat conditions.

Image source, Getty Images
Image caption,

Sajid Javid changed the law in 2018 to allow medicinal cannabis to be prescribed in "exceptional cases".

"The Government has already changed the law to allow specialist doctors to prescribe cannabis-based products, where 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 quality, safety and effectiveness."

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