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. After his 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.

In November 2019 after a year long consultation, NICE, the National Institute of Clinical Excellence issued their guidance on whether cannabis based products should be available on the NHS. These guidelines that they have produced are so restrictive that no one has access to medical cannabis on the NHS. To date there are no new NHS prescriptions since the law changed. Only that of Alfie and one other child in Northern Ireland. This is simply shattering. Other than a small dispensation that one CBD only product will be available for a small amount of children suffering with two certain epilepsy types, no other medical cannabis products will be available until more pharmaceutical research is available.

The guidelines are so restrictive that if it wasn’t for the fact that Alfies story helped to change the law and therefore he now has an NHS prescription, he would never be given a prescription today.

Thousands of patients have now had their hopes dashed and face intense disappointment and further suffering.

In particular, I know of many families with severely epileptic children who are now having to try and fund raise to go abroad or to pay for private prescriptions to get access to medical cannabis for their seriously ill children. Many of these children have been on medical cannabis products now for over a year showing huge improvements, yet NICE did not make any allowances for those children, who are proving to their doctors and their families every day that medical cannabis works for them. Why is this not evidence enough that medical cannabis can be so helpful to many children and adults who suffer with epilepsy and other hugely debilitating life long conditions.

NICE state that there is insufficient evidence to warrant prescription for pain. That is nonsense and flies in the face of several publications and even the opinion of the Chief Medical Officer. That Recommendation effectively stops doctors prescribing.

Are all the other G7 countries with full access to medical cannabis on prescription wrong? Why is the UK Government and the Department of Health taking so long to catch up with modern medicine? How can they sit back and allow the suffering of so many vulnerable children and their families go on?

Please support Indie-Rose (pictured) who is hugely benefiting from taking medical cannabis and the many patients who are suffering by signing this petition.