Hannah Deacon and Medcan Family Foundation Trustee Alice Jones joined the BBC Breakfast team and BBC 5 Live radio show on 13 September to highlight the lack of access to medical cannabis following the change of law nearly five years ago.
Patients looking to access this treatment are being turned away say campaigners, because doctors do not know about the medicine, which is not on NHS trusts' approved lists or have funding pathways to prescribe cannabis based medicines.
Speaking to the BBC ahead of the launch of a new documentary due out this week - Cannabis: Prescription or Pot Luck - Hannah told the BBC's Alastair Fee that she felt Alfie was only given his NHS prescription because she spearheaded a very public campaign in the media. "I think they changed the law to take the wind out of my sails because the campaign was very effective."
Alice Jones, mum of Jasper Salisbury-Jones shared her family's experience of the transformation seen with medical cannabis for her son's rare condition, "It's just jaw-dropping. For this medication to do this is incredible." Alice and her family spend £1600 every six weeks on Jasper's treatment, paying privately. "We're not choosing between this and another medication or a form of treatment, we're choosing between this and watching my son slowly slip into mental disability and then probably paralysis and death."
Shared by the BBC on Twitter/X, you can watch the interview on the BBC Breakfast sofa here.
Listen to the 5 Live Clip
Hannah and Alice also spoke to 5 Live's Rachel Burden on the same morning. Hannah shared:
"Alfie has a very rare condition. He's one of nine boys in the world, and he was spending every week in hospital having hundreds of seizures, very unresponsive to mainline treatments until he used cannabis treatments.
He used to suffer with what's called tonic clonic seizures, so that's the whole body into a seizure. Alfie has a clustering type of activity where you have lots of lots of seizures in one go within a few days, always a risk of death and always very much unresponsive to the mainline treatments that were available to doctors within a hospital setting. And the impact on him was he had no quality of life. He was either having seizures, or he was at home, being very violent and aggressive and very upset because he suffered severely from side effects of having hundreds of seizures he was having.
The impact on us as a family - I was a full time carer - was a huge amount of trauma, something that will never leave me what I've seen my son go through. Every week holding his hand, hoping he wouldn't die. That's the reality of me and many other families who have severely ill children with severe refractory epilepsy. It is a horrendous condition. There is very little research into it because it's so rare, very difficult to develop treatments and actually, you know, that's why I feel so passionately about this because cannabis medicine has changed his life. He's been seizure free for over three and a half years.
When the law changed we had the Health Secretary Matt Hancock standing up in Parliament many times when he was questioned on this saying, 'it's now available, we've changed the law doctors can prescribe' but that simply wasn't true. The rhetoric changed who we need to have trials for children - this product can't be available unless it's licenced and trialled. The issue with that is that it does block access because, as I've said, we're talking about very rare conditions and very poorly children.
Are we saying that pharmaceutical companies are going to create randomised control trials for nine boys in the world? Give them a placebo? That's very unethical. It's not going to happen.
So it's basically blocked access and the government are just saying 'we need trials'. Most drugs that children are given in a hospital setting have no randomised control trials - such as something called chloralhydrate - which has never had a randomised trial - they are unlicensed and they give them freely in the NHS. All we are saying is treat this drug as you treat other pharmaceutical drugs and prescribing medicines because the very nature of these conditions is they will not have trials in their condition."
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