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“You made a promise” – families release moving video two years on from law change



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The Health Secretary has been urged to ‘stop ignoring’ desperate families in a new video released by loved ones of critically ill children.

In a fresh plea launched by medical cannabis education platform MEDCAN Support, the Government is being urged to deliver on its promise to give children access to life-saving medical cannabis on prescription.

In March 2019, Health Secretary Matt Hancock reassured parents of children living with life-threatening epilepsy when he said medical cannabis would be available on NHS prescription ‘in a matter of months.’

Over one and a half years later there has still been no change.

MEDCAN Support’s film features many of the families affected by the lack of NHS access to medical cannabis. In it they tell Matt Hancock that he made them and their loved ones a promise – and now he should ‘stop ignoring’ their plight.

A recent YouGov poll found that 1.3 million people are using cannabis illicitly for medical purposes.

“Families are forced to either fundraise for private prescriptions, look to black market products which are unsafe, not consistent and illegal, or just simply watch their children suffer,” said Matt Hughes, Director of MEDCAN Support and dad to three-year-old Charlie.

Matt is pursuing legal action to demand a review of the National Institute of Care and Excellence (NICE) guidelines which prevent his son – and many other children – from accessing an NHS prescription.

The Department of Health has repeatedly said that it is the decision of the clinicians whether they legally prescribe the medicine. But many doctors feel unable to due to a lack of funding, lack of evidence and restrictive guidelines from NICE and the British Paediatric Neurology Association (BPNA).

Matt continued: “We have seen recently media reports that a third NHS prescription has been funded by the NHS after a two-year battle for the family. Are we really saying that this is the best way to treat these families? Many of them have a private prescription which has been issued by a private physician trained in the use of medical cannabis.

“This is a clinical decision which should be recognised but funding must come from the NHS, families can no longer bear the burden of paying for these treatments themselves.”

MEDCAN believes there are various ways the Government could help these families, such as helping fund the prescriptions, allowing GPs to prescribe and making a clear pathway for Make it clear what the pathway to prescription is for doctors and patients and their families.

They could also work with NICE to look at the evidence base and how observational and real-world data could be accepted and Project Twenty21 on their observational database which will provide evidence on medical cannabis.

At the end of the video, Hannah Deacon, whose son, Alfie Dingley, received the first medical cannabis prescription on the NHS makes a personal plea to the Health Secretary, asking why her son should have access when these children don’t?

Hannah commented: “Matt Hancock and the NHS have a duty of care to these families. Why were we promised medical cannabis on the NHS for these children yet nothing to facilitate this has happened? We have seen three prescriptions for whole plant cannabis in two years on the NHS. This is unacceptable. Are we saying if you run a campaign you are able to access medical cannabis and if you don’t you can’t?

“If private clinicians are deeming there is enough evidence to prescribe for these children, then the medicine should be funded by the NHS to take the huge burden away from families. These children and their families are some of the most vulnerable in our society, how much more do they need to put up with?”

The MEDCAN Support video will be shared on social media during Medical Cannabis Awareness Week 2020, with campaigners changing their profile pictures to raise awareness.

Watch the video

Sign the petition here