Daughter’s battle as NHS ‘dithers over cannabis oil’
THE dad of a seven-year-old girl who is in and out of hospital with epilepsy claims that the NHS are “neglecting the care” of his daughter after failing to provide her with CBD oil.
Lola Clark has suffered with epilepsy since she was three years old.
Her dad, Ceri Clark, desperately wants his daughter to be provided with CBD oil, known as cannabidiol to help with her condition.
He claimed that he was told by staff at Morriston Hospital that his daughter was able to have the oil before changing their mind.
“Lola has episodes where she has two to three seizures every day,” he added.
“Every couple of weeks she clusters. She had 24 seizures on Monday and 20 on Tuesday.
“We have to take her to hospital because it could cause brain damage and when she falls she hits her head from falling to the ground.
“She was in hospital this week but she came out on Tuesday evening.
“We have been told since CBD oil was made available via the NHS that Lola would be put on it to help.”
The 33-year-old, who lives in Morriston, believes that the oil has the potential to help.
He added: “In November 2018 we were told that Lola will be put on it. We thought it was great news as its something that can work to help her have a nice normal life.
“I have done my research and I fully believe that it is going to help her and not harm her.
“But the NHS are not providing it, it has the potential to stop her from suffering. I understand that there are guidelines but its been well over a year now.
“They keep dragging their feet and changing their minds over whether she can have it.
“They feel that it wouldn’t work on her last November, but they said it would in November 2018.
“The reasons they gave was because she is not clustering but she is clustering, she has had clusters twice in the last month.”
Medical trials in the US and Europe have provided strong evidence that CBD works as an anticonvulsant.
These trials say that it has shown itself efficient at reducing the symptoms of children with two types of epilepsy, known as Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS).
These types of epilepsy are not well treated by existing drugs but the trial suggest that medical cannabis products are safe for children and young adults and efficient at treating them.
Ceri said that all he wants is his daughter to live a normal life.
“I bought a bottle of oil myself and I made the nurses aware of this. It had a temporary effect on her but the hospital said that the oil they have is stronger than what I am giving her.
“I feel so sorry for her, she has a mind of a two to three-year-old. The epilepsy has knocked her so far back she doesn’t understand things.
“I just want Lola on the oil, I’ve lost count on the amount of times she has been to hospital.
“Its so dangerous,” he said. Gareth Howells, director of nursing and patient experience for Swansea Bay Health Board, said: “We are very sorry that Mr Clark has concerns regarding his daughter’s care.
“Mr Clark has raised those concerns with the health board.
“We can assure him we are looking into them, and we will be responding to him directly as soon as possible.”