‘My son has had hundreds of seizures this week – please give him medical cannabis before it’s too late’
“It feels as if we are losing a piece of him every time he has a seizure. We need action now before it is too late, and the next seizures end his life,” the mum wrote in her letter to Carwyn Jones
The mum of a teenage boy with severe epilepsy has written to the First Minister asking him to intervene to secure medical cannabis for her son.
Bailey Williams’ parents have been calling for him to receive medical cannabis for years but, after his condition drastically deteriorated in the last week, his mum Rachel Rankmore decided to write a personal note to Carwyn Jones as the parents now fear for his life.
In her letter, Ms Rankmore, from Cardiff, explains that her 16-year-old son was admitted to the University Hospital of Wales on Wednesday, November 29 with swollen lips and mouth, adding that during his admission he suffered more than 300 seizures.
Since November, patients have been able to be prescribed medicinal cannabis by specialist doctors, and not GPs.
A spokeswoman for the Welsh Government said that it is for clinicians to decide on the best treatment for their patient, not politicians, with the health board adding they have been in regular contact with Bailey and his family and have met with them to discuss treatment and pathway options.
Ms Rankmore wrote: “The emergency medication Bailey was administered helped for a few hours, but the seizures quickly returned upon returning home. Since then his body continuously pulsates with seizure activity.
“It is horrendous to watch our child suffering every minute of every day from his seizures.
“The Tonic Clonic seizures and myoclonic seizures are uncontrollable and relentless, meaning that no emergency intervention is working to stop the continuous seizures.
“His seizures are leaving him unable to swallow, walk, talk or function normally and we fear for his life during every single seizure.
“I cannot explain the pain of seeing our son suffer this way is when he has been well for more than three years.
“It feels as if we are losing a piece of him every time he has a seizure. We need action now before it is too late, and the next seizures end his life.”
Ms Rankmore writes in the letter that, in the latest admission, they were not seen by their prescribing neurologist but the head neurologist Dr Francis Gibbons.
During that conversation, Ms Rankmore said she was led to believe that she could not prescribe Bailey Bedrocan Oil (which contains CBD and THC).
“Whilst I am aware Bailey could be treated with CBD only Epidiolex, our previous experience with Bailey on CBD only products do not control his seizures,” the mum wrote. “This is why it’s essential that we introduce the THC component.”
Tonia Antoniazzi, MP for Gower, has also written an urgent letter to the First Minister asking him to personally intervene to secure medical cannabis for Bailey.
Ms Antoniazzi added: “This is an extremely upsetting time for the family, and I am worried that as a result of undue caution or lack of clarity over the guidelines Bailey’s condition will continue to worsen and could even cause his death.
“The Welsh Government and NHS Wales can act now and potentially save Bailey’s life.”
A Welsh Government spokesman said: “This is a very upsetting time for the family but whilst we recognise the difficulties and distress they are facing, it is for clinicians to decide on the best treatment for their patient, not politicians.”
A spokeswoman for Cardiff and Vale University Health Board said they always act in the best interests of patients and put patients at the centre of everything they do.
She added: “We have been in regular contact with Bailey and his family and have met with them to discuss treatment and pathway options and we have discussed the concerns the family have raised about the management of his condition.
“We will continue to work with the family to best manage his condition in the future.”