The family of a Lancashire boy with severe epilepsy has launched a desperate appeal to raise £30,000 for potentially life-saving medical cannabis which has been denied by the NHS
Joanne and Paul Griffiths, of Much Hoole, say they have been forced to seek private treatment for their nine-year-old son Ben, who can have up to 300 seizures a day.
He is currently being treated at Alder Hey Children’s Hospital but after a series of epileptic drugs failed to improve his condition, his parents bought the whole plant medicinal cannabis medication online.
This appeared to be working. However, despite having the backing of their son’s neurologist, its usage was blocked by the hospital’s NHS Foundation Trust.
Joanne, 43, says the decision is unfair, especially when she knows of three children in the UK who have been allowed the drug free on the NHS after being granted a special licence to use it.
She adds Ben, who also has cerebral palsy, meets the criteria defined by British Paediatric Neurology Association (BPNA) and so doesn’t see a reason why he should not have the medication which would improve the quality of his life.
She says: “We had tried many things and, after researching, we bought some whole plant medical cannabis from health food shops. You can also buy it in your
local pharmacy. It was helping Ben, reducing his seizures to six a day.
“However, this is really expensive and they do not always have it in stock. You can’t stop and start Ben’s medication, as he needs to be given it consistently. We need it to be prescribed to us.
“We started to ask doctors for a way forward and gained early access to the drug Epidiolex on compassionate grounds due to there being nothing else left for Ben to try. This medication is only a CBD (Cannabidiol) isolate and proved to be not as effective as the whole plant oil Ben had been on before. Although seizures were down to 20 a day, when Ben became ill or changed any medication, they would dramatically increase.
“Ben’s neurologist asked the NHS Hospital Trust if he could give him a whole plant medicinal cannabis medication, which has now been legal to prescribe from November.
“This was refused by the panel at the trust.
“Their reasons are that surgery was offered. But a Great Ormond Street Hospital surgeon told us that Ben would continue to have
seizures, so why would we go for the surgery?
“The trust said it doesn’t know the effects on the developing brain, but Ben has a mental age of a 10 month baby and his brain is not developing.
“If your child is at risk of death then really the risks are worth taking, as for most of the children like Ben, it’s about quality of life and he doesn’t have that whilst having hundreds of seizures.
“There are three children in the UK who have been given the whole plant cannabis on the NHS. If they have it, others should be allowed.
“It is heartbreaking watching him go through it all. Any seizure could kill him. He could seriously injure his head and face as he could fall at any point.
“Waking up at night to check if your child is still alive is just horrible.”
With current medication, Ben’s seizures have reduced to between 80 and 100. However, if he was to take whole plant cannabis oil, these would drop to just six a day.
Joanne adds she feels she has no option now but to go for private treatment and so needs to raise £30,000 for consultation, travel and ongoing prescriptions.
She adds: “We know from NHS England and the newspapers that the only children receiving these new medications have gained access through private doctors and prescriptions.
“This costs a lot of money and the prescription alone costs £1,000 a month.
“Others are seeking prescriptions by going abroad. This costs far more. We know that people are going down this route to prove the medication works for their child, so they can eventually get an NHS prescription.
“We feel this is maybe the only way. We know we shouldn’t have to do this to help stop his seizures, but until the NHS change their views on these medications we see no other option.
“This could take time and be very costly. Firstly, we have to find a doctor willing to prescribe and then meet the ongoing costs of prescriptions, consultations and travel and accommodation expenses, to wherever the specialist may be based.”
Ben attends The Coppice School, in Bamber Bridge, and Joanne adds Ben’s condition is tough on all the family, especially, his twin, Adam, and four sisters.
She says: “It is especially hard for Adam as he has a special bond with him. He has lost his play mate as Ben can’t do things a healthy child could. I have had to rely on my two older daughters for support.
“ We are lucky to have such a wonderful community who have offered to help. Adam’s school, Hoole St Michael’s Primary, is going to do some fund-raising. Preston North End, Walmer Bridge Spar, Gales Cakes, and Taylor Made Lashes have donated items to raffle for a charity night in April.”
Alder Hey Children’s NHS Foundation Trust said it cannot comment on individual cases. A spokesman said: “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, and the published guidance from NHS England and the British Paediatric Neurology Association (BPNA).
“Alder Hey always works closely with families to discuss treatment options.”
To make a donation visit https://just4children.org/children-helped2019/boisterous-ben/