After every possible legal avenue has been exacerbated pressure on the Government finally made them cave when Hannah Deacon, mother of Alfie Dingley who suffers from a rare debilitating form of epilepsy broke down their walls and managed to start the process for applying for a licence to import medical cannabis products from the Netherlands legally. Alfies mum shares an update about the process which sounds like some positive news.
What started out as hope has now converted into belief for one mother desperately and diligently fighting for safe legal access to cannabinoid medicines through the NHS.
In a video update via a Facebook live stream, Hannah Deacon, mother of Alfie Dingley, the four year old boy who has featured in a number of news stories about his epilepsy condition leading him to have up to 100 seizures a day – each one leading to brain damage. The medicine that can prevent this from happening, THCa is available on prescription through GPs in the Netherlands and Hannah had taken Alfie to stay there in order to trial the medication. The result? Alfie became almost seizure free but upon returning to the UK where the law meant he had to leave his medicine behind he suffered a further 5 hospitalisations due to serious life threatening seizures. Simply because the law says he can’t have THCa, a natural compound to prevent it.
You can imagine the distress this causes parents when seeing their child turns gray and stops breathing – knowing in that moment that politicians are dragging their heels through the bureaucratic process.
Alfie, as a UK citizen should be given access to his life saving medicine free of charge through the NHS like any other patient and it is the hope of his family that this will be the case once the application has been approved.
And we finally have some information on the application process which everyone has been wondering about – just how is this going to work? Well now we know a bit more. Hanna Deacon has had to apply to the Government in a similar way to that of a pharmaceutical company a process that takes 16 weeks.
Licence Application Process
“So just an update, we have a fantastic team of doctors behind us, led by a wonderful guy who is very passionate about helping my son.
The home office are actually being very good so far, they initially said it would take 16 weeks (four months) to do this, they are basically asking our team to go through a similar application process as a pharmaceutical company that wants to get a licence, which is… which was what they were asking us to do in the beginning.
We have managed to now get that down to a much shorter process, they do have to do things like compliance checking where the oil is going to be kept at the pharmacy obviously, which is fair enough, I spoke to nick hurd personally this week and he said, if our side do everything we have to do, in the time that we have to do it then we will have a decision within 4 weeks. Which is a massive improvement on 16 weeks.
They are being very supportive, obviously it’s not going to be done over night, which is a shame, we all know, everyone that supports us, we all know that cannabis as a medicine for things like epilepsy is safe and effective.
There are over 20,000 research projects that have been done around the world to prove that, but in this country it’s still a schedule 1 drug, we can say we would like it done quicker but the fact is we are…we have put an application in and we are going through the process which is just a fantastic result that they have even allowed us to do that.”
Within four weeks, Britain should know if cannabis, when in the UK, can and does therefore have medicinal benefits – an admission they have refused to show any movement on despite Sativex containing a two strain blend of whole plant extracts being a Schedule 2 drug.
“So we have to stay positive we have to know this is going in the right way and in four weeks we will have a decision. We are hoping that decision is going to be favourable, all the doctors supporting us in the team that we have got are fantastic and they have no reason to refuse it – i don’t think, as we are doing everything, we are jumping through every hoop we are being asked to do.
Hopefully we get a favourable result otherwise we kick up a big storm, and we are good at that, we managed to have a good campaign up until we managed to put the application in, we’ve got amazing media support so we know if we have got to access that – we can. But I want to give the home office the chance to do the right thing and that is what we have agreed. We will stay silent and media silent to let them go through the process and hopefully we will get the right result.”
Quite where this will have to go next if this application process is refused is to be questioned and there is outright belief from all at Alfies Hope that this is going to be the case that makes the change we have all been urging and campaigning for. The idea is sickening, that mothers looking after their children with a disability should have to jump through hoops or drum up media frenzies to get heard by the protectors of the people when the evidence is as clear as day.
How Alfie Is Doing
“Alfie is doing well, we have put up his dose of CBD which he has tolerated, he’s doing well, he could stil be doing a lot better with his THC, we do know that, he is doing better, but taking him off the THC really knackered him up and thats why he ended up in hospital 5 times in a row when we got back from Holland, but he has settled down again now which is fantastic but we just plough on, we keep strong.
Obviously we have days where we are exasperated by it all, I get upset, there’s lots of other things that have gone on that I can’t talk about now but i will, I’ll tell you all everything when we have sorted it, but there are days where it is very upsetting and difficult and you just think “this is my boy, he needs this medicine and it shouldn’t be this difficult, but i do believe this is the beginning of change.”
We will get there, we just need to stay strong, we thank all of you for your support and I really do believe that we will get there. We actually have amazing government support believe it or not, I know people say “you haven’t you haven’t” but I can’t tell you everything that goes on because I can’t but I will in the future but we have got amazing cross party support from lots of MPs Liberal Democrat, Conservative, Labour, all lobbying for us, and I do believe this will happen, we just have to stay strong.
It is inspiring to see this level of positivity after so much adversity and it shows you that you don’t have to resort to brash tactics that aim to offend people to be heard or make some progress, and I think we can all agree that some good progress has been made, politically and through social awareness for people who need medical cannabis. It goes to show also, that those who do have a battle and have their own voices to be heard (unlike Alfie) should think about the best way they could be heard that puts the bigger picture into the fighting perspective rather than immediate personal gain.
On the 28th of April, Ben Rocke, friend of the family organised a climb up Snowdonia to raise money for funding Alfie’s oil.
What a great way to show support and raise awareness in the process, it looks like a great time was had by those who participated! (hint to clubs wondering how to fund their collective dreams).
This should not have to happen though,
“We have some amazing people supporting us, asking them to do the right thing, so we have to stay positive, I believe if you stay positive, positivity will come your way, so that’s the saying of the day!”
Good luck Alfie and family, you have our support – and power to you Hannah Deacon, you are fighting the good fight in a very good way.
The UK Cannabis Social Clubs are actively campaigning for social change so the sale of cannabis is not left to gangs to use children to push their product. Age regulation from authorised retailers will keep consumers safe and products out of the reach of youths.
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