An Edinburgh family has welcomed a decision by the UK government to introduce two clinical cannabis medicine trials.
Karen Gray, from East Craigs, along with epileptic son Murray, 9, have said that the announcement is “good news” but are now calling on the government to write NHS prescriptions for families relying on THC based cannabis medicines on compassionate grounds.
They say that now that trials are underway, families should no longer be forced to pay out thousands of pounds to keep their children alive.
In response to the announcement, caring Karen was reserving full judgement until all the facts about the trials were made available.
But she did say: “It is definitely a step in the right direction as we have been waiting for this for three years now and at last it's happening.
“Clinicians will be prescribing THC based medicines as part of the trial, so I cannot see why they cannot prescribe ours?
“If it wasn't for our children they would not be doing these trials as we were the ones that brought this to their attention.”
It is understood that the UK government will release the finer details of the trial later today.
Christine Jardine, the MP for Edinburgh West, secured the government promise today to support trials of medicinal cannabis which she has marked as an important step towards making it available on the NHS.
In response to a question from Jardine MP, health minister Gillian Keegan announced the UK government will be supporting a programme of two randomised clinical trials into products which contain CBD, CBD plus THC and a placebo.
This comes just days after Edinburgh Live had reported on failed Conservative promises from 2019 that stated that trials would take place within months.
The announcement follows discussions that Jardine MP had with the health secretary, Sajid Javid, in January.
It is understood that the secretary of state legalised medicinal cannabis when he was home secretary three years ago, but in that time only three NHS prescriptions have been issued.
Campaign group End Our Pain, of which Karen Gray is a dedicated member, have been heralded as the catalyst for forcing change by Jardine.
The group is made up of parents and individuals that rely on THC cannabis medicines to treat a variety of conditions.
Karen has campaigned for several years alongside these families to see the introduction of NHS prescriptions for THC based cannabis medicines.
Her son Murray, who suffers from a rare epileptic condition called ‘Doose syndrome’ that he was diagnosed with in 2017, was suffering from up to 12 seizures a day and was even confined to hospital for the best part of a year when his seizures meant that he was in a constant state of status.
To help her son, Karen smuggled Bedica and Bedrolite oils from the Netherlands which worked brilliantly at allowing Murray to lead as normal a life as possible.
Although the family were eventually able to have the medicines prescribed in the UK, they could only access this at a cost of around £1,400 - crippling the family financially.
And without this medicine Murray’s life would be placed at risk.
Liberal Democrat Ms Jardine welcomed the news saying: “I am delighted that the government has listened to our calls and is supporting these trials which, hopefully, can break the deadlock and bring closer the provision of NHS prescriptions for children who desperately need them.
“I have seen first-hand the transformative effect medical cannabis can have on children with epilepsy. That is why it is so welcome that the government has taken these steps today.
“There is however still a lot more that can be done in the short term to alleviate the strain on these families who have fought so hard for their children. I hope this signals the beginning of more support for them from this government, especially in the short term.
“We also need to recognise that medicinal cannabis can be an important contribution to the relief of pain and suffering for thousands of people in this country including those children with rare forms of epilepsy, but also many others with conditions such as multiple sclerosis and chronic pain.”
