Hannah Deacon, medical cannabis campaigner and Director at The Medical Cannabis Clinicians Society, MedCan Support and Maple Tree Consultants joined the GCI Content Hub in conversation.
Could you give our readers an overview of what led you to cannabis?
My son Alfie has a severe form of epilepsy. He had his first seizure at eight months old and was diagnosed with a non-inherited gene mutation called PCDH19 when he was five. This gene mutation causes severe clusters of seizures, learning delay and behaviour problems. In 2016 Alfie was having up to 150 severe seizures a week in clusters which always needed hospital treatment. Using high dose steroids and anti-epilepsy drugs caused awful side effects and only stopped his seizures for a matter of days when his clusters would start again.
After much research into ways in which we could treat Alfie with medicines which may have less side effects, I stumbled upon cannabis being used as an anti-epilepsy medication. After immersing myself in learning, we as a family decided to travel to Holland in September 2017 where Alfie was prescribed Bedrolite for his seizures. It worked extremely well, and in February 2018 we came home and worked with ‘End our Pain’, the campaign group, to run a media and political campaign which resulted in Alfie’s doctors receiving a schedule one license on 19th June 2018 so they could prescribe the cannabis products Alfie had in Holland. On 7th July 2018 I came into the UK legally for the first time with Alfie’s CBD and THC products. These have been funded by the NHS ever since.
In the UK, despite the laws in 2018 passing to facilitate patients access to cannabis medicine, patients are still finding it difficult as ever to access these life changing medicines. What is the current guidance issued by bodies such as NICE and the BPNA?
NICE reviewed cannabis as medicine in 2018/2019 and their guidance came out in November 2019. This guidance stated that there was not enough randomised trial data to support the prescribing of unlicensed medical cannabis products in the NHS. This has caused a major block on access, especially for paediatric patients who it could be argued are in the greatest need. There has since been a clarification from NICE on prescribing for epilepsy due to a legal case with was brought by the parents of Charlie Hughes. Please see below for the clarification:-
Interpretation of the Guideline
3.1 The guideline made research recommendations for the use of unlicensed cannabis-based medicinal products for severe treatment-resistant epilepsy. The committee took the view, based on the evidence available at the time, that there was insufficient evidence of safety and effectiveness to support a population-wide practice recommendation (that is, a recommendation relating to the whole population of people with severe treatment-resistant epilepsy).
3.2 The fact that NICE made no such population-wide recommendation should not however be interpreted by healthcare professionals as meaning that they are prevented from considering the use of unlicensed cannabis-based medicinal products where that is clinically appropriate in an individual case. Patients in this population can be prescribed cannabis-based medicinal products if the healthcare professional considers that that would be appropriate on a balance of benefit and risk, and in consultation with the patient, and their families and carers or guardian.
3.3 There is no recommendation against the use of cannabis-based medicinal products. For more information about why the committee decided not to recommend against use of these products, see the rationale section of the guideline.
The BPNA’s guidance still states that brain surgery is more preferable than starting an unlicensed cannabis based medicine. See here for full guidance 2021.10.12 BPNA CBPMs guidance. They also now state with recently updated guidance that, if a private doctor is to prescribe unlicensed medical cannabis products, then this doctor should take over the whole care of the patient in question. This is not usual practice and is actually denying the paediatric patient NHS care, which I wholly disagree with. It must be noted that the BPNA is a membership group and does not have any regulatory power, yet it seems their guidance is taking precedent of that issued by NICE.
What do you believe is the reason behind the disconnect between the legal status of these medicines and the realities of access?
It is very nuanced as to why there is such an issue with access to CBPMs on the NHS. I believe it is due to the cannabis plant not being a product which is easily made into a pharmaceutical and therefore hard to patent, which could be a big issue. Recently there was a BMJ peer reviewed article about the illusion of evidence-based medicine and this explains a lot of the issues. Clinicians are not routinely educated on the endocannabinoid system nor that of plant-based medicines.
I think there does need to be a sea change to get proper access to these types of medicines on the NHS with better education for clinicians, NICE looking at RWE and observational data as legitimate and a reasonable way to evaluate safety for this plant. Otherwise, we will see cannabis products being pushed down a pharmaceutical route only of isolates and whilst I absolutely believe they have their place and should be available to all who may benefit, there are some patients who simply will not benefit from these types of products. We need to create new frameworks to enable the safe prescribing of whole plant cannabis products to patients.
What do you believe to be the social impact of not ensuring cannabinoid medicines are available to the patients that need it the most?
I have seen only too well the social impact of caring for a seriously ill child. I was a full-time carer, earning £60 a week to give my son full time care. I was not able to work, socialise or really be a good enough parent, friend or partner due to serious stress my life was under caring for my child. There was a huge lack of services for us which included struggling to secure respite, social workers and a school place for Alfie. All of it caused stress for him and us. By enabling Alfie to access whole plant medical cannabis, this has helped to stop his seizures and therefore enable his quality of life to improve hugely. This also has the knock-on effect that I am now able to work, and be a better partner and parent to my daughter. I feel very strongly that blocking access to this medicine for children is pushing mainly mothers, who are usually the full-time carer, into a poor quality of life where they are not able to work or socialise and face a life time of caring for their sick child. This really can’t be right and, with fair access to medical cannabis, it will enable many parents to go back to work and feel that their life is more their own.
Drawing from your first-hand experiences (and experiences from others you work closely with and know) how would you describe the toll it takes on a family when they are forced to access these medicines through illicit sources?
It is of huge concern to me that parents and patients are currently being forced to access illicit cannabis products for medicinal purposes. Sadly, I think the blocking of these medicines by regulatory bodies, membership groups and clinicians is enabling harm for patients and their families. Cannabis is legal for medicinal purposes, therefore these agencies, hospital trusts, doctors and our government must work together to ensure safe legal access. Patients and their families will access cannabis whether it’s via a clinician or not, so surely we need to recognise this and make it safe and legally available, and stop pushing already vulnerable people into a more vulnerable place.
Albeit that there’s now a huge amount more scientific information around the safety and efficacy of cannabis, shifting public opinion on a topic that has been wrongly stigmatised for decades will not happen overnight. What do you believe has to happen to significantly change the public perception around cannabis? How can we get there?
I think the public are on board with medical cannabis; sadly the awareness just isn’t there and many people don’t even realise that they could access this medicine legally. I would love to see a public awareness campaign around the legality and benefits of cannabis-based medicines. We need to reduce stigma around cannabis which has sadly been created by many mistruths, which will take time, but I hope in the future with increased awareness and education that things will improve and the public will be more accepting of cannabis and its benefits.
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