The mum of an epileptic child relying on cannabis to stop his seizures is reviving her battle for the NHS to prescribe medical marijuana.
Around 700,000 people have signed a petition calling on the Health Secretary Steve Barclay to “stop denying access.”
It comes four years after Hannah Deacon won her fight for the health service to prescribe medical cannabis to her epileptic son Alfie Dingley.
Access to medicinal cannabis with a prescription in the UK was legalised in November 2018 for certain conditions, raising the hopes of thousands of epilepsy and chronic pain sufferers
Yet just a handful of prescriptions across England are being provided due to “hugely restrictive guidance” blocking access, Ms Deacon said.
That's despite around 20,000 patients in England currently paying for private medical cannabis prescriptions - leading to fears of a two-tier system. "There has been a total block on NHS access," the Warwickshire campaigner told The Mirror.
Some parents are reportedly paying £1,000-£2,000 per month for private cannabis treatment for their epileptic children.
"We have families fundraising to pay for a medicine which is legal. It’s an absolute disgrace. It’s really hurting people who are already vulnerable," she added.
Hannah’s petition is one of the fastest growing on Change.org after she renewed her call for change.
And she says Alfie, aged 11, has just celebrated two and a half years seizure free since being prescribed cannabis - having previously suffered up to 30 violent seizures a day.
“It has not only changed his life but that of our families who are now able to have a much more normal quality of life,” Ms Deacon said.
She is calling for a roundtable between campaigners, the NHS, Health Secretary and NICE to free up the logjam in prescriptions. "We need the PM to accept this policy isn’t working and putting our children and patients in a position where they have to pay," Alfie's mum added.
Hannah Deacon first took son Alfie to the Netherlands in 2017 where he had access to cannabis oil to treat his seizures. After a public campaign on their return to the UK, then-PM Theresa May allowed doctors to apply for a licence for prescribing cannabis for the first time - but only in limited circumstances. Alfie has been on one of the dozen or so NHS-funded cannabis prescriptions since then.
Ms Deacon says hospital trusts have effectively "blocked their docs" from prescribing cannabis over fears of contradicting guidelines from the regulator, National Institute for Health and Care Excellence (NICE).
"There are some doctors who do want to prescribe - they've seen people on private cannabis prescriptions and the difference it's made. But they're worried about being sued," she told The Mirror.
A spokesperson for NICE said: "Until there is clear evidence of the safety and effectiveness of cannabis-based medicinal products, specialist doctors need to consider...the relative risks and benefits in choosing treatments."
They added: "Even had NICE recommended widespread use of these products, it would not necessarily mean that they would become routinely available on the NHS. This is because the majority of the products are unlicensed and so access will only be available from specialist doctors."
A Department of Health and Social Care spokesperson added that licensed cannabis-based medicines are only funded by the NHS where there is "clear evidence of their quality, safety and effectiveness."
“We are taking an evidence-based approach to unlicensed cannabis based treatments to ensure they are proved safe and effective before they can be considered for roll out on the NHS more widely," they added.
NHS England and the National Institute for Health and Care research is due to start recruiting for trials into the effectiveness of medical cannabis for various conditions, which is likely to inform the guidelines.
