Safeguarding the lives of 40 children with severe epilepsy through a high-profile media campaign on medical cannabis

In December 2020, the families of more than 40 children with severe epilepsy were informed by the Department of Health that their supply of medical cannabis (Bedrolite) from Holland would be terminated as a result of Brexit. Fearing for her son’s life, Hannah Deacon, a prominent medical cannabis campaigner and the mother of nine-year-old Alfie Dingley, the first child in the UK to receive a permanent medical cannabis license, approached The PHA Group for media support.

Hannah had been instrumental in the legalisation of medical cannabis in 2018 and was keen to lead the charge against the government on this new development. PHA launched a campaign during the Christmas break with an exclusive interview on the front page of the Guardian, and a lead feature in the Times.

This was supplemented by multiple BBC interviews, coverage in every single national newspaper and live broadcast interviews with the Today Programme, 5Live, ITV This Morning and Talk Radio.

In total, PHA secured over 50 pieces of national and broadcast coverage and 120 pieces of coverage overall during the two-week campaign. As a result of the widespread publicity, Matt Hancock was forced to directly respond to the supply issue live on MP Question Time.

Prime Minister Boris Johnson also wrote a personal letter of apology to Hannah and granted all 40 children access to the drug for another 6 months whilst a permanent solution was negotiated with the Dutch authorities.

This was a big turnaround from the letter sent by the Department of Health in December 2020, which stated that no resolution on Bedrolite was possible and that parents should seek alternative medicine arrangements for their children.

Of the campaign, Hannah Deacon commented: “You have truly saved Alfie’s life with what you have done for us.”

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