1st November 2020 – Matt Hancocks Broken Promise.

Matt Hancock's Broken Promise

Families still waiting 2 years on from the law changing....

November 1st 2018 after a successful campaign for Alfie Dingley, cannabis was moved from schedule 1 to schedule 2, to allow for research and prescriptions.

The expectation was that families with children suffering severe refractory epilepsy would have access in the normal way to cannabis based prescription medications (CBPMs). The Government subsequently asked the National Institute of Health Care Excellence (NICE) and the British Paediatric Neurology Association (BPNA) for further guidance to clinicians in prescribing.

Their guidelines were extremely restrictive, so much so that NHS trusts and clinicians had no confidence in prescribing with NICE calling for further research in the form of randomised controlled trials against a placebo.

NICE had narrowed down over 1000 anecdotal and open labelled studies to show safety and efficacy of CBPMs to just 4 randomised controlled trials run by GW Pharmaceuticals for Epidyolex which is a CBD isolate. As much as we all agree more research should be conducted, cannabis has over 150 active compounds and as such cannot be tested in the same manner as a pharmaceutical medication. That being said there are large collections of data around the world of robust evidence especially in Epilepsy.

The NHS have recently announced they plan to run trials in 2021, although using isolates and not a true whole plant oil which raises doubts as to whether prescriptions would be available for oils which are currently accessed via the private route.  These trials would also take many years to complete.

In March 2019 the 20 families of End Our Pain travelled to Parliament to meet with MPs and talk about the lack of access. That day, the Secretary for Health and Social Care, Matt Hancock met with the parents to try to understand the blocks and promised that in the "normal way" CBPMs would be available. Shortly after that meeting Matt Hancock asked for a review by NHS England to the blocks with interviews conducted with the families of End Our Pain and their respective NHS clinicians and trusts treating their children. The recommendations from the review called for a new department to look closer at children who have failed numerous medications. In November 2019 RASCAS based at GOSH was formed. Unfortunately children who have been seizure free using whole plant cannabis have continued to be denied, with only one case being allowed.

November 2020 and only three prescriptions exist.  One of which was recently granted, but needed the backing and support of The Centre of Medical Cannabis (CMC), a legal challenge, continued high media interest and discussions with the Northern Irish government and senior neurologists at Great Ormond Street over a period of 2 years.

For the average family who doesn't have any access to campaign groups or media, their only route is via the NHS or private clinics, assuming of course they can afford it.

Many families have tried the same route as two of the existing NHS prescriptions, via local clinical commissioning groups (CCGs), but were declined.

Another family have resorted to challenging NICE on their guidance.

Many families are now using whole plant cannabis to treat their children with great success when conventual medications and treatments simply have not helped. These children are no longer costing the NHS thousands for weekly trips to hospital under blue lights and consequent stays, some of which are in intensive care.

There is no argument that cannabis helps these children. This is a funding issue.

Families are now calling on the government to act and act fast. There are solutions similar to that used for cancer based medications of which have not yet undergone any trials to be accessed by patients and funded by government. This type of scheme could be used whilst the UK awaits trials, and NICE and other organisations open up guidelines.

These children are some of the most vulnerable in society, with life limiting conditions, they are the evidence. It's cruel and inhumane to force these families to find hundreds, even thousands per month to keep their children alive.

Please help these families by sharing and signing Hannah Deacons petition calling for the government to intervene.


Below is a video put together by the families of MedCan.




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