A South Ribble mum has spoken out against a hospital’s decision to block medicinal cannabis treatment for her son, saying “this isn’t living”.Advertisement
Joanne Griffiths of Much Hoole says Alder Hey Children’s Hospital are denying 9-year-old Ben the chance of a happy life, despite its own consultant having recommended the treatment.
Ben has severe epilepsy, and has in the past suffered up to 300 seizures per day. Born with cerebral palsy, Ben has the mental capacity of a 10-month-old.
In October Ben was prescribed Epidiolexis, a purified form of cannabidiol (CBD) that contains less than 0.1% of tetrahydrocannabinol (THC), which is the psychoactive part of the plant.
Joanne told Blog Preston: “At that point Ben was having 80-100 seizures per day but they reduced to between five and 20 per day with the Epidiolexis. This showed Ben was responsive to medicinal cannabis. However because the seizures were still quite severe we asked if we could add in a further product.
“Our consultant recommended Tilray and Bedrocan, which come in higher THC form, as he understands the dangers of Ben injuring himself when he has a seizure. However the decision had to go to a hospital panel meeting, and it’s there where the request was turned down.
“We were shocked to be told Alder Hey aren’t willing to try this new product on Ben, even though he has such extreme needs. Nurses tell us they’ve never seen a child have so many seizures per day. Ben’s consultant neurologist and another consultant have both said he has one of the worst types of drug-resistant epilepsy they have seen.”
Alder Hey have since said they would not provide these products at all, but Joanne argues that’s against guidelines.
She continued: “The decision has to be based on personal need. There have been other high-profile cases where children have accessed these drugs due to their clinical needs. Ben is in the same position, so we don’t understand why he is being denied the drugs.
“Alder Hey also said there isn’t enough evidence that these products work. But when you look at the drugs that have been used on Ben for the past nine years, there’s no evidence of them working for children, and many are not even licensed for use in children.
“Another reason they gave for blocking the treatment is that they don’t know the long-term effects of THC on a developing brain. However Ben is like a 10-month-old baby, and he isn’t going to progress much further.”
Joanne now says she feels they are coming to the end of the line: “This is about a child who has nothing to lose but everything to gain. Nothing else is available, nothing else works. He’s found a medicinal cannabis product that works, now we’re simply asking for a further medicine to gain control.
“We’ve even provided evidence from Professor Mike Barnes about how, when very low levels of THC are used with large amounts of CBD, there is no psychoactive effect. The medication we are talking about is 100 per cent CBD oil and one per cent THC.
“We’re concerned the decision is being influenced by funding issues, but we’re also worried the panel don’t have all the evidence about Ben’s case. That’s because scans and notes from Great Ormond Street still haven’t arrived since Ben transferred last year.”
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A statement from Alder Hey Children’s NHS Foundation Trust said: “The Trust cannot comment on individual cases.
“Neurologists at Alder Hey will consider whether a child is eligible to take cannabis based medical products taking into account a number of factors. This includes the clinical history of the child, the scientific and clinical evidence for use of cannabis based medical products in particular clinical situations, and published guidance from NHS England and the British Paediatric Neurology Association (BPNA).
“Alder Hey always works closely with families to discuss treatment options.”
While in the immediate future Joanne is concentrating on stabilising Ben, she is also looking ahead to getting long-term control over his condition. The family may seek a second opinion from Great Ormond Street’s Finbar O’Callaghan, who sat on the original panel that enabled children including Sophia Gibson to access medicinal cannabis.
Joanne paid tribute to the support she has received from Charlotte Caldwell and other parents in need of medicinal cannabis for their children. But the detrimental effect on the family is clear: “As well as the impact on Ben’s quality of life, the lack of treatment is affecting our other five children including Ben’s twin, Adam.
“Ben used to be part of family life. He could go to the beach and play in the water, bounce on the trampoline, go to school. Laughing and joking and having fun – that’s living. Now he can’t walk or keep his eyes open. He can barely hold his head up.
“We’ll have to wait and see what the outcome is, but one thing we will always believe is that Ben deserves quality of life, and he deserves the chance to see if these drugs will work for him.”