Edinburgh family say UK government ‘broken promise’ of medicine for son

An Edinburgh family are demanding answers after saying they waited three years for a promise made to them by then-Secretary of Health and Social Care Matt Hancock.

On March 19, 2019, several families from across the UK ventured to Westminster to lobby the UK government to prescribe THC-based cannabis medicine to their epileptic children through the NHS.

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Karen Gray, from East Craigs, was present at the meeting as the mother of nine-year-old Murray, who has a rare epileptic condition called Doose syndrome.

His rare condition had left him in constant condition in the hospital, having several life-threatening seizures a day, before gaining access to the cannabis-based drugs Bedica and Bedrolite that his mother had smuggled across the country. border from the Netherlands.

Access to the drug is now available by private prescription in Scotland at a clinic in Stirling – but it costs Murray’s family around £1,400 a month – something they claim Hancock has promised to change.

Caring Karen and her son are part of the End Our Pain campaign group who have been vocal on the issue for years and often hold events in Parliament, such as the one mentioned above, to try to persuade MPs to support their cause to prescriptions for THC-based cannabis drugs. be made available free of charge on the NHS.

At the aforementioned March reunion, End Our Pain invited Matt Hancock to hear stories of families struggling to make ends meet with drug costs, while trying to keep their children alive.

During the video, Hancock can be heard reassuring parents that the drug will be available free on the NHS in the coming months, but accepted that the months may not be good for some of these families.

He said he “understands how important it is” that parents can have access to THC-based cannabis drugs such as Bedrolite and Bedica which are used to treat rare forms of epilepsy through prescriptions on the NHS.

Hancock adds that the drugs are undergoing the relevant tests, but said the decision will have to be based on a clinical decision – something the British Pediatric Nurses Association (BPNA) has not yet offered.

It is also accepted that families with children whose lives have been improved by the drugs should act as a reasonable trial to understand the effectiveness of the drug.

But Karen says she feels let down by the promise made years ago, and while she hopes current Health and Social Care Secretary Sajid Javid will push the issue forward, she says she won’t hold her breath after several broken promises have come true.

She said: “Hancock promised us in London on March 19, 2019 that our children would be able to access their life-saving medicines. But it’s now 2022 and we still have to shell out around £1,400 to cover Murray’s costs.

“I had recently met 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 or no understanding of what medicinal cannabis can accomplish. They need training to understand the benefits of treatment and so that our children can be properly medicated.



Murray before accessing the THC drug.

“We were promised observational trials because our children’s experience and years of treatment were deemed insufficient to prove that THC cannabis drugs work. But we didn’t hear anything.

“We were also told that within seven months we would have access to prescriptions through the NHS, but we still have to go and have our prescriptions filled privately.

“The cost of keeping Murray in hospital, before the drugs Bedica and Bedrolite, was around £100,000. The cost of his medication through the NHS is said to be around £16,000. It makes no sense – it saves taxpayers money.

“I hope the UK government can see the reason and prescribe this life-saving medicine.”

Hancock is no longer in the role after leaked video emerged showing Hancock groping and kissing a colleague amid the pandemic, but families feel the Tory government should still deliver on its promises.

It is understood that the UK government believes that more evidence is needed to routinely prescribe and fund other treatments currently not licensed on the NHS and will continue to support further research and seek ways to minimize the costs of these drugs. .

They also believe that the majority of THC/CBD products are unlicensed and have not demonstrated clear evidence of their safety, clinical effectiveness, and cost.

This despite several years of successfully treating dozens of children in the UK – including Murray.

The treatment was also backed by Murray’s former pediatric neurologist, Dr Adelaida Martinez, who wrote a letter to Sajid Javid last year professing the treatment’s success.

A spokesperson for the Department of Health and Social Care said: “Our sympathies go out to all patients and families facing rare and difficult to treat conditions.

“The UK government has already changed the law to allow specialist doctors to prescribe cannabis products, where clinically appropriate and in the best interests of patients, and we are working closely with partners to establish clinical trials to test other products for safety and effectiveness. .”

The UK Government continues to assert that health matters are a matter for Scotland and therefore a matter for the Scottish Government.

However, it is understood that the decision rests with the UK government as the issue is considered an illegal substance issue and not a health issue.

A spokesperson for the Department of Health and Social Care said: “Our sympathies go out to all patients and families facing rare and difficult to treat conditions.

“The UK government has already changed the law to allow specialist doctors to prescribe cannabis products, where clinically appropriate and in the best interests of patients, and we are working closely with partners to establish clinical trials to test other products for safety and effectiveness. .”

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