The high-profile cases of the likes of epilepsy sufferer six-year-old Alfie Dingley brought the urgent need to acknowledge and harness the medical properties of cannabis to the heart of Westminster and the nation during summer last year.
Alfie, who suffered constant horrendous seizures, has now been seizure free for nearly a year.
The Home Secretary and the Prime Minister acted decisively and allowed for prescription. So, I am perplexed and bitterly disappointed that a system has been implemented that does not currently work for patients. I am not aware of a single NHS prescription for medical cannabis being written since the law change of 1st November other than for the CBD-only drug Epidiolex.
We believe there may have been a handful of private prescriptions, but are aware of only one written for a case of intractable childhood epilepsy. And in that case the family are now having to pay around £900 a month out of their own pockets for their daughter’s medicine.
So how have we got into this situation? The guidance from the NHS and medical professional bodies that accompanied the law change is overly restrictive.
So there is a high degree of fear in clinician’s minds of what the impact could be on their career if they took the decision to prescribe in the face of those guidelines and recommendations. I have confirmation from the very highest levels of the NHS and the General Medical Council that nothing in the guidance precludes a clinician from prescribing.
But that fear is so strong that they simply aren’t doing so. I accept that these medicines are new to clinicians in the UK.
I understand that caution should be the order of the day. But I am repeatedly seeing cases where the caution has become so extreme as to fly in the face of any notion of common-sense. Just as one example, there are a few cases of children with intractable epilepsy being seen to improve on medical cannabis products obtained by unofficial routes by the parents – and then the clinicians still reusing to prescribe even though they acknowledge that it works.
And let’s remember there are numerous conventional medicines being routinely given to children that may have gone through trials but have severe side effects – and some don’t even work.
If this disproportionate fear, and disproportionate reluctance to prescribe, cannot be eased I feel that only a radical overhaul of the policy will work. We need a system that considers the unique nature of cannabis as a medicine. We cannot treat it like other pharmaceutical products as it is not a single compound. There are hundreds of components to medical cannabis that all have unique properties that work together in an ‘entourage’ way.
But there are patients, lots of them kids, that don’t have the time for Government to implement a new policy.
So, in the short-term I am calling on the Government to set up a special trial made up of patients who are currently being refused by their clinicians and give them prescriptions for medical cannabis. This needs to happen urgently, so desperate patients can have relief from their symptoms and we can start building up a more solid evidence base to show clinicians that this is a safe medicine that works.
Sir Mike Penning is chair of the All-Party Parliamentary Group on Medical Cannabis under Prescription and Conservative party MP for Hemel Hempstead.