An Edinburgh family is demanding answers after they say they have waited three years for a promise made to them by the then secretary of state for health and social care, Matt Hancock.
On March 19 2019, several families from across the UK ventured to Westminster in order to put pressure on the UK government to prescribe THC cannabis medicines to their epileptic children through the NHS.
Karen Gray, from East Craigs, was in attendance at the meeting as mother to Murray, nine, who suffers from a rare epileptic condition called Doose Syndrome.
His rare condition had left him in a constant state of status in hospital, having several seizures a day which threatened his life, before he accessed cannabis medicines Bedica and Bedrolite that his mother had smuggled across the border from the Netherlands.
Access to the medicine is now available through a private prescription in Scotland at a clinic in Stirling - but this costs Murray’s family around £1,400 a month - something they claim Hancock promised would change.
Caring Karen and her son are part of the End Our Pain campaign group that has been vocal on the matter for years and often organises events in Parliament, like the one mentioned above, to try to persuade MPs to support their cause for THC cannabis medicine prescriptions to be made available for free on the NHS.
At the aforementioned March meeting, End Our Pain invited Matt Hancock to hear stories from families who have been struggling to make ends meet with the cost of the medications, whilst also trying to keep their children alive.
During the video, Hancock can be heard giving assurances to the parents that the medicine would be available on the NHS without charge in the coming months but accepted that months are no good for some of these families.
He said that he “understands how important it is” that parents can gain access to THC cannabis medicines such as Bedrolite and Bedica that are used to treat rare forms of epilepsy through prescriptions on the NHS.
Hancock adds that the drugs were going through the relevant tests but said that the decision will have to be based on a clinical decision - something the British Paediatric Nurses Association (BPNA) has yet to offer.
There is also an acceptance that the families with children whose lives have been improved by the drugs should act as a reasonable trial to understand the effectiveness of the medicine.
But Karen says that she feels let down by the promise made several years ago, and although she is hopeful that the current Health and Social care secretary, Sajid Javid, will push the issue along, she says that she will not be holding her breath after several failed promises came to pass.
She said: “Hancock made the promise to us in London on March 19 2019 that our children would be able to access their life saving medication. But we are now into 2022 and we are still having to fork out around £1,400 to meet Murray’s costs.
“I had recently met with Christine Jardine, my local MP, who assured me that Sajid Javid was hopeful of finding a solution in the coming months.
“But the reality is that the government continues to cite the BPNA who have little to no understanding of what medicinal cannabis can achieve. They require training to understand the benefits of the treatment and so that our children can be properly medicated.
“We were promised observational trials as our children’s own lived experience and years of treatment was deemed insufficient evidence that THC cannabis medicines work. But we have not heard anything.
“We were also told that within seven months we would have access to the prescriptions through the NHS but we are still having to go and have our prescriptions filled out privately.
“The cost of keeping Murray in hospital, before the Bedica and Bedrolite medicine, was around £100,000. The cost for his medication through the NHS would be around £16,000. It doesn’t make sense - it saves the taxpayer money.
“I hope the UK government can see the reason and prescribe this life saving medication.”
Hancock is no longer in the role after a leaked video appeared to show Hancock groping and kissing a colleague in the midst of the pandemic but families feel as though the Conservative government should still honour their promises.
It is understood that the UK government believes that more evidence is needed to routinely prescribe and fund other currently unlicensed treatments on the NHS and that they continue to back further research and look at how to minimise the costs of these medicines.
They also believe that the majority of THC/CBD products are unlicensed and have not demonstrated clear evidence of their safety, clinical and cost effectiveness.
This is despite several years of successful treatment of tens of children in the UK - including Murray.
The treatment was also backed by Murray's former paediatric neurologist, Dr Adelaida Martinez, who wrote a letter to Sajid Javid last year professing the success of the treatment.
A department of health and social care spokesperson said: “Our sympathies are with all patients and families dealing with rare and hard to treat conditions.
“The UK government has already changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients, and we are working closely with partners to establish clinical trials to test further products for safety and efficacy.”
The UK government continues to argue that health matters are devolved to Scotland and therefore this is a matter for the Scottish government.
However, it is understood that the decision lies with the UK Government as the issue is seen as an illegal substance issue and not a health matter.
A Department of Health and Social Care spokesperson said: “Our sympathies are with all patients and families dealing with rare and hard to treat conditions.
“The UK government has already changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients, and we are working closely with partners to establish clinical trials to test further products for safety and efficacy.”
