Hannah Deacon has revealed that her son Alfie Dingley’s licence for cannabis medicine has been revoked following the 1 November law change that permits it to be prescribed by specialist doctors.
Alfie was given a special licence in July after media attention around epileptic children who were having to break the law to medicate forced the Home Office to set up a temporary ‘expert panel’ to award a limited number of licences. Hannah said recently that since then Alfie has been seizure free and “doing amazingly well”.
But now that the law change has come into effect Alfie’s licence is no longer relevant. In a video posted to Facebook Hannah said that she “knew it was coming” and had received a confirmation by email. But the guidelines are so strict and the specialist doctors so reluctant to prescribe that Hannah now does not know where Alfie’s next supply will come from.
“As we know, the NHS guidelines and the reliance on professional bodies that say that nothing but pharmaceutical double-blind procedure trialled oils can be prescribed, this means that there is no doctor in this country brave enough to come out and prescribe,” she said.
“All the 17 families that I am helping whose children are having seizures everyday are being told either, ‘no we’re not going to help you’, or ‘we want to help you but we’re terrified of the General Medical Council’, which is a disgraceful situation.
“At the moment there’s a lot of fear-driven stuff about cannabis in the media that we need to fight back against. The Medical Clinician Society was launched on Monday, where hopefully doctors will come to learn about prescribing medical cannabis.
“We really need the guidelines to be changed. We had a group of doctors who were on Alfie’s licencing team, but our prescriber was a GP and he can’t prescribe for Alfie any longer, so we have three weeks of oil left with no one to prescribe. I’ve spent the last three days with the people at End Our Pain trying to get some dialogue going with the Department for Health to try to urgently find a prescriber because I’m now in the position where I was four months ago. If they don’t do the right thing then obviously this will blow up because I’m not going to be put in a position where my son is put at risk and be made ill.
“I’m not going hell for leather in the media yet because I want to give them the chance to do the right thing. Let’s hope that they do. Parents are talking about whether we have to turn to the law or judicial review, but no one wants it to have to come to that.
“At the end of the day, Alfie’s not going to go without his medicine because I’ll take him to Holland if I have to. I’ll sell my house if I have to. I’m not going to let him go back to where he was at death’s door to where he is now, which is a happy child.”
Alfie has been taking Bedrocan. Hannah noted that doctors are saying that Epidiolex – made by GW Pharmaceuticals – will be OK to prescribe, but that it won’t have a licence until May. GW Pharma’s CEO Geoffrey Guy has said that there is “no one size fits all for cannabis medicine” yet it seems that the Home Office has manipulated the guidelines to prioritise its product. Theresa May’s husband Philip’s Capital Group is the largest investor in GW Pharmaceuticals; GW chairman Geoffrey Guy is a Tory donor and drugs minister Victoria Atkins is married to Paul Kenward, boss of British Sugar, which works in partnership with GW.