Ill boy’s mother urges re-think over Government’s ‘cannabis medicine’ decision
Six-year-old Alfie Dingley suffers from agonising seizures as a result of his rare form of epilepsy.
The mother of a seriously ill six-year-old boy has described a government decision to deny him a life-changing cannabis treatment as “astonishing”, and pleaded with the public to help lobby for a change of heart.
Alfie Dingley’s mother Hannah Deacon said she felt the Home Office was not applying common sense in refusing to shift from its default position and grant the youngster a licence to use cannabis oil to treat his rare form of epilepsy.
The product is currently illegal in the UK despite being available for medical purposes throughout Europe, including in the Netherlands where Alfie and his family spent five months paying for treatment which they said soothed many of his symptoms.
Speaking to the Press Association following the Home Office’s statement on the weekend, Ms Deacon said: “I find it astonishing that they are treating our case like we’re trying to get our hands on snake oil.
“It (medicinal cannabis) is legal throughout Europe, it’s recognised throughout Europe as a proper treatment – as a pharma-grade product – it’s just that the UK has not caught up yet. yet the Home Office can’t see that. It’s wrong.”
Last September, Alfie went to the Netherlands to take a cannabis-based medication prescribed by a paediatric neurologist, and saw his seizures reduce in number, duration and severity.
But the family returned to the UK a week ago to continue fundraising for the campaign and to lobby for the licence to be granted.
On Sunday, the Home Office said the drug “cannot be practically prescribed, administered or supplied to the public”, meaning Alfie’s family’s request will not be granted.
Ms Deacon, from Kenilworth in Warwickshire, said: “Our neurologist said that if we don’t get him off these prescribed drugs, it can have serious mental health implications for my son.
“Alfie understands a lot more than he can say. He’s traumatised when he has to go to hospital.
“He cries and screams. He’s had to be held down by numerous people.
“We don’t have ten years to wait for this. Alfie might not be here by the time the drug is approved in this country.
I find it astonishing that they are treating our case like we're trying to get our hands on snake oil Hannah Deacon
“We’re not opening the door to the whole world – there are about nine boys with the same condition as Alfie.
“He deserves to have a better quality of life and I will not stop fighting for him. He’s a six-year-old boy, there’s only so much fighting he can do. So it’s up to me, the family, supporters, politicians to help.
“I would urge people and politicians to support us and raise this with Amber Rudd to save this little boy’s life. If it strikes a chord with anyone, it would mean so much to us for you to help.”
It came as members of the all-party parliamentary group on drug policy reform called on the Home Office to assist with Alfie’s plight, in an effort to reduce his seizures and hospital visits brought on by his condition.
Alfie’s seizures, which can number up to 20 or 30 a day, can gradually be controlled in UK hospitals, but over time it is likely he would be institutionalised with psychosis and die prematurely.
- More information on the campaign is available at https://endourpain.org/