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Without regular doses of the cannabis-based drug Bedrolite eight-year-old Murray Gray’s violent epileptic seizures will return, says mother, Karen Gray.
Before using Bedrolite Murray has hundreds of seizures each day but daily dosage of the medication, bought from the Netherlands and prescribed by a private clinical, completely stopped the fits.
Seizure free for more than two years the £1400 monthly treatment is something the young boy cannot live without but medical costs have driven his Edinburgh based family into financial turmoil.
“We can’t keep paying this,” said Ms Gray. “It’s not sustainable.”
Use of cannabis-based medicine to treat rare forms of epilepsy has become increasingly common and in November 2018 British law was changed to allow two types of this medicine to be made available on the NHS.
Provision has also been made for some British children to get unlicensed cannabis-based products. In 2018, Alfie Dingley was granted an exemption by the Home Office to get NHS funding for the whole plant cannabis oil he takes.
Ms Gray has been campaigning for two years to have a similar exemption made for her son but the UK and Scottish Government have refused this request, not enough is known about the long-term effects the medication will have on the developing brain.
GP’s want to prescribe the drug but cant, says doctor
Adding her voice to the debate, Dr Adelaida Martinex, a consultant paediatric neurologist in The Portland Hospital for Women and Children, has written to both government’s asking them to reconsider their position.
In her letter she said: “I have been prescribing CBD medication to a group of children with intractable epilepsy since December 2018.
“I have done this on compassionate grounds as these children do not have the two defined types of epilepsy that enables them to be prescribed the licensed Epidiolex through the NHS.
“Without access to their unlicensed CBD medications, many of these children would have been left fighting for their lives.
“Most children have been taking their prescription for at least two years and have been stable, or significantly improved during this time.
“ I feel it may be more clinically appropriate to transfer them to their local GP’s. I know that the majority of the GP’s dealing with this group of children wish to prescribe, but, in order to do so, they require a change of policy from the Health Department.”
More research is required, says UK and Scottish Government
The Scottish Government said that other clinicians still have concerns around the quality and safety of the medication.
While the government has committed to supporting clinical trials to build evidence it has not announced a time frame when the drug is expected to become available.
A Scottish Government spokesperson said: “The product for which the family is seeking NHS funding is not currently licensed for use on the NHS, and unlicensed products are not routinely prescribed by NHS clinicians.
“It is important to note the regulation, licensing and supply of medicines remain reserved to the UK Government and the Scottish Government has no power to alter this while responsibility rests with Westminster.
The UK Government’s Department of Health and Social Care said they had every sympathy with the Murray family but also said more evidence was required.
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