Chartered Psychologist and Head of Research at Drug Science, Dr Anne Katrin Schlag, heads up the newly formed Cannabis Industry Council’s (CIC) Research group.
With the third anniversary approaching of the rescheduling of cannabis as a medicine for some patients in the UK, she explains why the battle to persuade health bosses to make it more readily available on the NHS still hasn’t been won, and the difference the CIC’s Research group plans to make.
ANNIVERSARIES are a time of celebration but also of reflection too.
One anniversary is very much on my mind at the moment – the rescheduling of cannabis-based products for medicinal use.
It will be three years on November 1 since the UK government added cannabis to the pharmacopoeia of medicines available by prescription through the NHS.
The move came on the back of a wave of emotive publicity centred on severely ill children for whom cannabis oil had had a life-transforming effect. It was seen as a game-changer for patients of all ages who had failed to respond to conventionally prescribed drugs.
Three years on and the reality is that whilst medicinal cannabis may now be legal here in the UK, very few people are liable to get a prescription.
Just Three NHS Prescriptions
Currently, it is only recommended to be prescribed for a narrow range of conditions, including muscle stiffness and spasms caused by multiple sclerosis, severe forms of epilepsy, and vomiting and nausea in adults triggered by chemotherapy – but even then you would only be considered if all other treatments had failed.
My use of the word ‘considered’ wasn’t random. Since the law changed only three NHS prescriptions for full spectrum medical cannabis – which has been proven to be effective for paediatric epilepsy – have been written. The total number of NHS prescriptions remains vanishingly small.
When medical cannabis was legalised it was the hope of patients who until then had had to use what they could obtain from the black market, or travel to the Netherlands to get via prescription, that it would become freely available within the NHS healthcare framework.
But NHS patients are being left frustrated by what they see as an inflexible system that is denying them access to cannabis treatment.
Patients can, of course, get a private medicinal cannabis prescription from a consultant, as is the case with any medicine, but this is based on the ability to pay. And medicinal cannabis comes at a cost – one that is too high for many, especially if you consider they may be suffering from a chronic condition and this would not be a one-off payment.
Project Twenty21, run by Drug Science, has helped hundreds of patients suffering from pain, neurological conditions, epilepsy and anxiety, gain access to medical cannabis at reduced cost as it works to make it more available on the NHS and create Europe’s largest body of evidence for its effectiveness.
But even with this price cap, it still costs a patient £150 a month to treat their condition.
The current situation is nothing short of a scandal – a word much loved by the mainstream press, to the point where it has become so overused it has lost its meaning. But I am not ashamed to use it in this context.
It is a scandal the Cannabis Industry Council’s Research group hopes to play a major role in turning around, however.
We are a group of over 40 drawn from a variety of backgrounds – researchers, patient representatives and industry experts. We share a common goal: to persuade the NHS, health providers, law makers and the government to make medicinal cannabis more readily available.
The CIC was only set up in the summer. But as a group we have already formulated our plans.
We understand the constraints the NHS has to operate under. It has to adhere to the guidelines set out by NICE (The National Institute for Health and Care Excellence). These guidelines have unfortunately taken a very narrow approach to prescribing medical cannabis for just the few conditions I’ve already mentioned.
Yet observational databases both in the UK and internationally show that medical cannabis is most frequently used and asked for around chronic pain, like fibromyalgia. But the NICE guidelines do not at present recommend a medical cannabis prescription for pain.
As a group we want to see these guidelines widened – not least with regard to childhood epilepsy.
It is claimed the evidence base for medicinal cannabis’ effectiveness is not strong enough in this case. But we have families we know have been helped by medical cannabis. We have seen incredible reductions in seizures, and going hand-in-hand with that, improvements in the quality of life for the children, their families and carers.
Whilst this is not RCT (randomised controlled trials) evidence, which is the gold standard set by NICE, the evidence base we have nationally and globally is accumulating.
We need to keep in mind that these are children who have not been helped sufficiently by any other medication, so to be able to offer an improvement in their severe condition has to be good.
It is not ethical that children with intractable childhood epilepsy, who are severely ill and who may suffer hundreds of seizures a day, who are unable to function and have little quality of life, are being denied access to medical cannabis on the NHS.
Medical cannabis is not a cure. These children are still ill. But as a treatment it can help reduce seizures and promote better sleep, eating and cognitive abilities for this group of patients.
To bring about meaningful change it is essential that we gain a broader acceptance of patient reported outcomes and real world evidence – something we are working to achieve through the CIC Research group, as well as through Drug Science.
Drug Science has already started collating real world evidence and also begun making the case for why RCT’s are not the best way forward in relation to medical cannabis.
We currently have a pattern of evidence from 20 paediatric epilepsy patients which we have analysed, retrospectively, showing very comparable results in terms of a reduction in seizures and lack of adverse effects.
A well-received case study on a relatively rare condition called Ehlers-Danlos Syndrome from one of our group members, was recently published in the BMJ Case Reports and showed the positive impact that medical cannabis had had on this patient’s life (https://pubmed.ncbi.nlm.nih.gov/34301703/).
Ehlers-Danlos Syndrome is actually a group of conditions that causes very flexible joints and stretchy, fragile skin. At its worst it is disabling causing everything from loose, unstable joints that can easily dislocate, to digestive, internal organ and bladder problems, extreme fatigue, easily bruised skin, and long-lasting joint pain. There is no cure.
As a group we would hope to do more research like this on fairly rare conditions where medical cannabis intervention hasn’t been analysed before and get them published in the likes of the BMJ, so the findings are accessible to doctors and healthcare providers.
Changes By Fourth UK Anniversary?
Across the board there is currently much exciting research being undertaken into the effects of medical cannabis on lesser known conditions. But more research does need to be done universally on the likes of psychiatric conditions, for example anxiety, post-traumatic stress disorder and depression, where patients are using medical cannabis.
It would be excellent to see this followed with RCTs, but also longitudinal studies using real world evidence databases so we can see over a year or two whether improvement continues, if it plateaus, if patients develop a tolerance or suffer any serious adverse effects.
As a Research group we are also looking to conduct a full health economic analysis on the use and cost effectiveness of medical cannabis on the NHS. There has been much written about the exorbitant cost to the NHS of prescribing medical cannabis.
But little has taken into account the possible cost savings of reducing other medication, a drop in A&E and hospital treatments and admissions, and savings on doctors’ bills.
Such an analysis would also cover a hoped for decline in the number of lost working days. When you look at chronic pain, one of the major related issues is that people are not able to function efficiently and hence are unable to work.
We have other research aims we are still discussing and which we believe will have the widest impact. We are aware of the need to communicate these directly to policy makers and are already in contact with MPs and various government partners to bring things forward.
I know I speak for the whole Research group when I say we hope that by the fourth anniversary of medical cannabis being legalised in the UK, that more NHS prescriptions for full spectrum cannabis will have been given out, that a broader variety of products will have been made available, and that more conditions will qualify for a prescription.
Dr Anne Katrin Schlag is a chartered psychologist and Head of Research at Drug Science, a leading independent scientific body on drugs that works to provide clear evidence-based information without political or commercial interference.
She leads the research for the Drug Science Medical Cannabis Working Group, focusing on amongst other areas the controversies surrounding medical cannabis and the improvement of patient access.
She is currently working on progressing the scientific evidence base of medical cannabis to include patient-reported outcomes, observational studies and the application of multi-criteria decision analysis to assess the benefits and safety of medical cannabis.
Dr Schlag is also scientific advisor to the Primary Care Cannabis Network.