Cross-party MPs have called on ministers to deliver a clear funding pathway to allow medical cannabis to be prescribed on the NHS.
Several MPs have signed a letter to the Prime Minister urging him to ‘finish what was started’ and give children with incurable epilepsy medical cannabis through the NHS.
Families from across the UK travelled to London and braved torrential rain on Tuesday 14 November, to take part in the ‘March of the Unicorns’ to raise awareness of the current inequality in access.
As part of the Save the Unicorn campaign, spearheaded by Medcan Family Foundation, they called on MPs to find an immediate solution for children with rare and severe forms of epilepsy, who are currently without access to effective medicines.
One of those attending was Charlene Londra, mum of eight-year-old Gino who was diagnosed with treatment-resistant epilepsy at the age of two.
The family have spent £37,000 funding a private medical cannabis prescription for him for the last three years, reducing his seizures by around 80% from 800 a month to just 100.
But due to their fears over the long-term inconsistency in access, Gino has come off his prescription to begin a new treatment on the NHS.
“Our worst fears have already happened,” said Charlene.
“Due to the worry of not having a prescriber, we have had to explore another treatment route, because £37,000 later it’s just not do-able. I’m terrified. If it doesn’t work, will I be able to get him back on a private prescription? Will he regress? It’s just horrific.”
Charlene Londra, mother of Gino.
Outlining the injustice
Charlene and other families were joined by co-founders of Medcan Family Foundation, Matt Hughes and Hannah Deacon, along with other high-profile advocates such as Professor Mike Barnes, who donned a unicorn suit to march from Archbishop’s Park to College Green in the heart of Westminster.
Professor Mike Barnes and Medcan co-founder, Matt Hughes
The march was followed by an event inside the Houses of Parliament, at which Professor Barnes spoke about the fact that not only is there no clear route to NHS access, but no consultants are willing to come forward to prescribe for these children privately.
Thirteen-year-old Jasper illustrated the current injustice with a presentation about him and his friend Alfie, who both have treatment-resistant epilepsy. Jasper has a private prescription for cannabis medicine, while Alfie’s parents have been unable to find a doctor to prescribe for him.
After one of two prescribing consultants recently retired, Professor Barnes felt he had no choice but to go back to the specialist register in order to continue prescribing to children whose conditions have vastly improved through the use of cannabis-based medicines.
He outlined what he described as two key issues preventing prescribing; the lack of a clear funding pathway through the NHS and the need for further training among the medical profession to address the knowledge gap around cannabis.
Professor David Nutt, founder of Drug Science, went onto share some of the research that the organisation has conducted in this field, including one study which showed cannabis medicines have a 96% chance of being effective for seizure reduction. In contrast, if two conventional anti-epileptic drugs fail to manage a child’s seizures, the chance of another being effective drops to less than 5%.
In his closing remarks, Professor Nutt likened the number of children who may have died due to not having access to medicinal cannabis to those who lost their lives in the Bristol Heart Scandal in the early 90s. Around 30-35 children undergoing heart surgery at Bristol Royal Infirmary died between 1991 and 1995 who would probably have survived if treated elsewhere, a report found.
Save the Unicorn campaigners at College Green, Westminster
Hannah Deacon, whose son Alfie was the first child to be prescribed cannabis oil on the NHS spoke on behalf of the mothers in the room, saying they were ‘resilient’ and ‘would not give up’ fighting for fair access.
Opening the event, Baroness Walmsley who has been a longtime supporter of the campaign, said: “While progress has been made, I’m sorry to say that five years later the policies of many of the trusts and the Royal Colleges, the lack of the right medical training in the face of so much convincing evidence, has meant that some children have been prevented from accessing the potentially life-changing medication that they so desperately need through the NHS.
“On the other hand, there are many GPs who I think would happily prescribe cannabis based medicines, but policies prevent them from doing so.”
She continued: “Today we come together as the voice for our children, and their future, as well as their present. We hope and trust that ministers will eventually see the light and support this cause. Together we can bring an end to the disgraceful situation in which so many children are suffering, whilst children with other conditions are given free care under the NHS. That is not equality.”
‘We need action’ – support from cross-party MPs
A number of cross-party MPs and peers voiced their support for the campaign, signing a joint letter calling on the Prime Minister to take ‘urgent’ action.
SNP member for Inverclyde, Ronnie Cowan, who is also a trustee of the charity, Intractable, told Cannabis Health: “We know that medicines like Bedrolite and Bedrocan are available and we know that they work for children who can access them here in the UK, but the current position is that these are only available through private prescriptions.
“We need to take the step of making it available on the NHS, and ensuring that doctors and GPs are willing to prescribe. They need to be trained so they can be confident in what they are doing and in the legality of it.”
Ronnie Cowan (SNP)
Fellow SNP member, Patrick Grady MP for Glasgow North, said he had constituents who have been impacted by severe forms of epilepsy.
“I know beyond doubt that this can make a difference,” he commented.
“There is a huge campaign dedicated to making changes in the legislation and now there really has to be action. There has to be funding, there has to be training and awareness among the medical profession so that there is confidence in prescribing.
“I know the difference that will make in the lives of these patients and families.”
Patrick Grady (SNP)
Conservative MP for Dover, Natalie Elphicke, agreed, speaking specifically in relation to her constituent Teagan Appleby, 13, who is currently in hospital as a result of not having been unable to continue accessing the cannabis-based medicine which was keeping her well.
“It’s absolutely vital that we finish the change and ensure that this medicine is available to all epileptic children like Tegan on the NHS,” Elphicke said.
Natalie Elphicke (Conservative)
Jim Shannon, Democratic Unionist Party (DUP) MP for Strangford, has also seen first-hand the impact that medicinal cannabis can have on children with epilepsy. His constituent, Sophia, was one of the few children to obtain an NHS prescription for medical cannabis after Alfie Dingley in 2018.
“Do I support this? Absolutely, because I have seen it work. I have seen the results, in a girl who was seizing numerous times a day and is now able to attend school, make friends, go on holiday and do things that would never have happened otherwise,” said Shannon.
“If you can give that quality of life back to someone, wouldn’t you want to do that?”
Jim Shannon (DUP)
Following the appointment of the new Health Secretary, Victoria Atkins, this week, Shannon added: “I hope that this new Secretary of State for Health will continue the hard work that has been done, and perhaps this one will listen to what we are trying to say.”
iNews has since reported that Atkins has recused herself from dealing with issues related to medical cannabis due to her husband’s position at British Sugar, the company which supplies cannabis for the manufacture of licensed cannabis-based medicine, Epidyolex.
‘Collaborative discussions’ and ‘tangible solutions’
Tuesday’s event was also attended by representatives from national epilepsy charities, including Epilepsy Action, Young Epilepsy and UK Infantile Spasms Trust.
Co-founder of Medcan Family Foundation, Matt Hughes, described this as a ‘great step forward’ and said the organisation would continue to engage with the government to provide ‘tangible solutions’, despite the lack of stability ‘hindering progress’.
“The aim of the #savetheunicorn campaign was to put focus back on the urgent need for NHS prescribing and funding of advanced cannabis medicines for the many hundreds of families we support,” he told Cannabis Health.
“We’re really pleased that this message came across with great national and regional coverage at a time when so much is happening in the world and here in the UK. To have Epilepsy Action, Young Epilepsy and UK Infantile Spasms Trust, taking an interest and attending the event is a great step forward. We look forward to continued collaborative discussions and work around the prescribing of these medications.”
Hughes added: “Having little stability within government – including six consecutive health ministers and five Secretaries of State – hinders progress, but we’ll continue to engage with the APPG and government departments, providing tangible solutions.”
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Author: Sarah Sinclair
