"On 19th June 2018, the hard battle was won to get my son Alfie Dingley, who suffers from refractory epilepsy, access to full extract medicinal cannabis on prescription on the NHS.
Alfie’s doctors received the first permanent schedule one medicinal 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 medicinal 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.
Over the last four 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 and a half years seizure free, which has not only changed his life but that of our 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 medicinal 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 other chronically unwell patient, they do not have time to wait for research to be fully completed. There is a vast amount of Real World Evidence and Observational Data which NICE should be considering when accessing the safety profile of medicinal 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. Of course research is needed to help develop better, prescriptive treatments using cannabis, but this must not block access to it. Many medicines that children especially, are prescribed in the NHS are unlicensed or off label and yet are used regularly. We want cannabis medicines to be treated in the same way, when you have a chronically unwell patient why should they not be able to benefit from this medicine, it may save their life!
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 that the Secretary of State for Health, can fund 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 the Prime Minister and Secretary State for Health, 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." https://www.change.org/p/prime-minister-rishi-sunak-and-secretary-of-state-for-health-steve-barclay-stop-denying-patients-access-to-medical-cannabis-on-the-nhs?recruiter=67213042&recruited_by_id=04a25296-a6cb-4ebb-907a-e918903141e1&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard
