Updated: Jun 30
Found via Facebook community: OVERGROW THE GOVERNMENT
"At the time of writing, this petition has reached 650,000 UK signatures - lets get it done" - Bill Hayes, Brixton UK.
Hannah Deacon started this petition to Boris Johnson MP (Prime Minister) and 5 others DECISION MAKERS:
Boris Johnson MP Prime Minister
Paul Chrisp NICE - National Institute for Health and Care Excellence
Sajid Javid MP Secretary of State for Health
On 19th June 2018, the hard battle was won to get my son Alfie Dingley, who suffers from refractory epilepsy, access to full extract medical cannabis on prescription on the NHS. Alfie’s doctors received the first permanent schedule one medical cannabis license which enabled them to prescribe the medicine Alfie had received in Holland under prescription. He then went onto receive the first NHS prescription when the law changed in November 2018. I (Hannah Deacon, his mother) also brought in THC based medicine legally into the UK for the first time in July 2018.
This fight not only helped my son, it played a big part in getting the law changed to allow access to medical cannabis under prescription in the UK.
This change came into effect on 1st November 2018. With it the hopes of thousands of patients were raised.
"No person should be denied access to medical cannabis - however some are being priced out of clinics. Is cannabis now for the wealthy?" - Nicolas Green - ProperKushty.
Over the last three and a half years, since the law changed only three prescriptions have been issued with NHS funding. The figure includes Alfie's prescription. Alfie has just celebrated two years seizure free, which has not only changed his life but that of his families who are now able to have a much more normal quality of life.
We have seen hugely restrictive guidance from the BPNA and NICE and many excuses as to why medical cannabis can’t be available on the NHS such as, lack of research, too expensive, not available to prescribe etc. None of this is patient centred and what’s best for many of these children who have refractory epilepsy and do not have time to wait for research. There is a vast amount of Real World Evidence and Observational Data which NICE should be considering when accessing the safety profile of medical cannabis. Due to the very nature of the plant it is very hard to put it through RCT's but this would also be dangerous for any child receiving a placebo.
Many parents have now spent nearly four years funding private prescriptions to keep their children well and safe and vitally out of hospital. We know that legally Sajid Javid can fund these prescriptions until a clear access route for these families and their very vulnerable children is found.
Please support the many thousands of families whose children could benefit from medical cannabis and sign this petition, which asks Sajid Javid to fund these families private prescriptions today to enable these families to try to enjoy the time with their children. We must also find a clear path of access on the NHS long term and work with stakeholders to enable this to happen.
Please support Indie-Rose (pictured) who is hugely benefiting from taking medical cannabis and the many patients who are suffering by signing this petition.