Are you looking for expert advice...

Virtual roundtable – watch again

On 13 December, international paediatric neurologists and medical cannabis experts came together for a panel discussion about the UK’s prescribing crisis for children with intractable epilepsy.

Hosted by the Medical Cannabis Clinicians Society, the roundtable discussion will reviewed the guidance, shed light on the concerns, and considered a way ahead for these children. The discussion provides doctors, clinicians, the wider paediatric medical community and parents of children with this condition accurate information about cannabis-based treatment.

Moderated by Dr Dani Gordon, Vice-Chair of the Medical Cannabis Clinicians Society, panellists – including Canadian Paediatric Neurologists Dr Evan Lewis and Dr JP Appendino, Consultant Paediatrician Dr Jane Hailey and Paediatric Cannabis Consultant Dr Bonni Goldstein –  shared experiences, evidence and case studies for medical cannabis for intractable epilepsy and the difference this is making for children globally.

Epileptic seizure frequency fell by an average of 86% among 10 children treated with whole plant medicinal cannabis, reveals research by charity Drug Science and published in BMJ Paediatrics Open

None of the children had responded to other treatments, including the only cannabidiol (CBD) product licensed for their condition – Epidyolex. Whole plant cannabis includes tetrahydocannabinol or THC for short, the main active ingredient of the plant that is responsible for the characteristic ‘high’ associated with recreational use, plus cannabidiol, other neuroactive cannabinoids, and molecules such as terpenes.

Researchers evaluated the use of whole plant medicinal cannabis in 10 children whose severe epilepsy hadn’t responded to conventional treatment, and two of whom hadn’t responded to the only pharmaceutical grade, purified CBD oil licensed for the condition in children (Epidyolex).

The researchers assessed the percentage change in monthly seizure frequency and the impact of medicinal cannabis on changes in conventional epilepsy drug use. They also reported the strengths and doses used and the costs incurred.

All the participants were recruited from End Our Pain and MedCan Support, two charities representing children using medicinal cannabis to treat their severe epilepsy. The children’s average age was 6, but ranged from 1 to 13 years. They had a range of epilepsies and three had other concurrent issues, including infantile spasms, learning disabilities, and global developmental delay.

Monthly seizure frequency reduced for all 10 children by an overall average of 86%.

The Drug Science researchers said:

“We believe that our data on whole-plant medical cannabis in childhood-onset severe treatment-resistant epilepsy, provides evidence to support its introduction into the NHS within current NICE prescribing guidelines. 

“Such a move would be hugely beneficial to the families, who in addition to having the psychological distress of looking after their chronically ill children, have also to cover the crippling financial burden of their medication.”

The Society is dedicated to training and supporting doctors to prescribe medical cannabis where clinically appropriate, and recently vowed to train paediatric doctors for free in order to go some way towards alleviating the prescribing crisis for children with epilepsy.

Read the full publication

 

 

The BPNA recently produced new guidance on the prescription of cannabis medicines for children with epilepsy. However, the Medical Cannabis Clinicians Society (UKMCCS) and Drug Science fundamentally disagree with this guidance. Expert clinicians from both organisations have produced a critique to provide commentary, evidence and further crucial information.

Download the commentary (PDF)

In the BPNA’s guidance, there is no recognition that the children in question have uncontrolled, drug-resistant epilepsy. They have a poor quality of life, often difficulties in school, in play and at home, and the whole family suffer from the consequences. In their commentary, the Society and Drug Science point out that recurrent seizures damage the developing brain and such severe seizures are associated with a risk of status epilepticus and death. The Society and Drug Science believe that clinicians must explore every avenue in an attempt to alleviate the seizures.

NICE guidance is now supportive of continuing prescription for those already on a cannabis product but sadly the BPNA will not change its stance on the subject. As a result, there are now only two prescribers, one of whom is retiring and neither of whom are taking on new patients.

This means over 50 children currently accessing their prescribed cannabis-based medicines are relying on just one doctor for continuing access to the only treatments that have kept them well and reduced hospital and ITU admissions. And, with no new children currently able to access a prescription, seriously ill children are at real risk of imminent harm.

Professor Mike Barnes, Chair of the Medical Cannabis Clinicians Society said:

“Professor Helen Cross was the first clinician to prescribe an unlicensed cannabis-based medicine for childhood epilepsy in 2013. That was a brave and correct move when a child was in extremis. It is a pity that the BPNA’s current executive committee members have reverted to an old and outdated paradigm of efficacy to the clear detriment of many thousands of children in the UK. The Society will teach any paediatric doctor – free of charge – how to prescribe medical cannabis products and provide ongoing mentoring and support.

We call for recognition of the value of unlicensed cannabis-based medicinal products by sensible and caring paediatricians in the UK.”

All medical practitioners, and in particular the BPNA executive committee, should note the General Medical Council “Good Medical Practice” principles. We specifically draw attention to these points:

David Badcock, Chief Executive Officer of Drug Science said:

“Our research into childhood intractable epilepsy clearly and consistently shows that the benefits of whole-plant medical cannabis far outweigh any associated risks.

The parents we have spoken to, as part of this work, find medical cannabis to be the most effective treatment for their child’s condition. Yet the BPNA appear to have ignored our evidence and these experiences. Instead, they seem to be wilfully denying access to legal medicines, and causing needless distress for families who deserve better.”

The Society and Drug Science call for recognition of the value of cannabis based medicinal products by sensible and caring paediatricians in the UK.

 

How to read the document

The original wording from the BPNA is retained in black. Our comments and additions are highlighted in green.

Download

Free training and support for paediatricians

The Society will teach any paediatric doctor – free of charge – how to prescribe medical cannabis products and provide ongoing mentoring and support.

Please contact us to learn more.

The Medical Cannabis Clinicians Society’s Guide to CBD has been newly updated for 2021.

The expanded guidance supports doctors and clinicians who wish to understand how CBD works, what a good CBD product looks like, and how better to support patients who are taking CBD.

Version 2 of the guidance, written by the Society’s Dr Leon Barron, Vice-Chair Dr Dani Gordon and Chair, Prof Mike Barnes, has been supported by expert researchers at Bud & Tender.

Download the guide here.

On Thursday 21st October, join The Medical Cannabis Clinicians Society and Bud & Tender as we explore what clinicians need to know about CBD. A fantastic live overview of the guide, this webinar will provide an overview of CBD for clinicians, including Endocannabinoid tone, modes of action and therapeutic effects, pharmacodynamics, different types of CBD oil available in the UK, controlled cannabinoids, Certificates of Analysis (COA’s) and dosing. We also summarise the current legal status of CBD in the UK.

BOOK NOW

 

 

Below is the text of an open letter which has been sent from the Medical Cannabis Clinicians Society to The Secretary of State for Health, Sajid Javid.

Members of The Medical Cannabis Clinicians Society have access to further information including prescribing guidelines, a secure online support network and events – covering what is needed to become a specialist prescriber of medical cannabis.

If you are a Paediatric Consultant of any discipline and would like to consider prescribing, we will provide free CPD-accredited training (online & face to face) and ongoing support and mentoring to you. Find out more about joining us

Open Letter, sent 4 October 2021

Dear Secretary of State for Health and Social Care,

The Medical Cannabis Clinicians Society (MCCS) was created in 2018 to support and educate clinicians who wish to prescribe medicinal cannabis in the UK. Today we write because of our considerable concern about the current situation regarding children with drug-resistant epilepsy who are denied NHS prescriptions for a medicine that has been shown to be life transforming for them.

There is now overwhelming evidence of the efficacy of medicinal cannabis for these children. A recent paper by Drug Science showed that there is a 96% chance of a child significantly improving after prescription of full spectrum cannabis. This is a remarkable statistic given that these children will have been resistant to all licensed anti-convulsant drugs, often suffering from hundreds of seizures weekly and experiencing a very poor quality of life combined with a risk of death. Although this was a relatively small UK study, similar outcomes have been demonstrated in many other larger international studies in children with drug-resistant epilepsy. Also, in more established medical cannabis markets such as Canada, US and Israel, there are now thousands of children with drug-resistant epilepsy who are being prescribed full spectrum products after licenced medications have failed to work, often with dramatic improvements in seizure control and quality of life.  Treating these children with conventional anti-epileptic medicines and other techniques is costing the NHS millions of pounds each year to care for them. However, when using medicinal cannabis products, many of them have remained at home and have had huge improvements in their seizure control and their cognitive development with consequential significant savings to the NHS in terms of pharmaceutical and hospital costs.

The British Paediatric Neurology Association (BPNA) declares itself to be the professional medical body for paediatric neurologists.  Apart from a specific brand (which is not full spectrum) in very limited circumstances that has been through the conventional licencing system, the BPNA appears to be very much opposed to the prescription of medical cannabis products. From what we understand, they appear to want to see more evidence about safety and efficacy and are concerned that these ‘full spectrum’ products are unlicenced.

Both of these points are hard to understand.  By more evidence, we presume they mean evidence generated from Randomised Control Trials (RCTs).  However, full spectrum medical cannabis has many active ingredients and is therefore, by definition, not well suited to such trials. And they seem reluctant ‘in extremis’ to accept the enormous volume of real world and observational evidence. And the fact that a medicine is unlicenced is not a bar to its prescription. Unlicenced medicines are routinely prescribed for a range of conditions.

Our concern is that what appears to be a deeply entrenched and dogmatic position on this subject from the BPNA is effectively denying sick children access to an efficacious and safe medicine that may well reduce or even stop their seizures and immeasurably improve their quality of life and reduce their chance of death.  It is deterring private prescriptions and is playing a part in the almost total block on NHS prescriptions.  This block in turn is forcing many very vulnerable families to have to fundraise thousands of pounds a month to source the medicine privately.

The BPNA’s current guidance states that you must be a paediatric neurologist to prescribe.  But this is their view.  It is not based on law and as we show here is not supported by national guidance.

It is our understanding that such is their strength of feeling on this matter, that the BPNA have referred one doctor who was prescribing such medicines to the General Medical Council (GMC) on the basis that he was a paediatric rheumatologist rather than a paediatric neurologist. Thankfully after careful review this case has now been dropped.  The GMC found no fault and no further action will be taken.  With the permission of the doctor concerned we highlight the following quote from the contribution of the GMC’s own independent medical expert.

“Dr X appears to have provided adequate care to the families who consulted him, with evidence of benefit, and no evidence of harm. The BPNA position that only Paediatric Neurologists should initiate treatment is not supported by other national guidance, and probably not in the best interests of children, as it may impede debate and research into the appropriate use of Cannibidiols (sic) in refractory epilepsy”.

Currently, there are just two paediatric neurologists prescribing for children and one of them is retiring in October.  Soon, there will be only one prescriber for over 100 children currently being administered these medicines and many thousands more who might benefit. This is simply unacceptable and puts the children who have prescriptions at real risk from rebound seizures, if they lose their prescribers.

We are calling on members of both the BPNA and the wider paediatric community to:

  1. Question the current position of the BPNA and to consider real world evidence and to treat individual patients on a case-by-case basis.
  2. Take into account the recently clarified NICE guidance which now recognise that cannabis prescription is reasonable if all else has failed and a child has responded to the medicine – “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…. There is no recommendation against the use of cannabis-based medicinal products”.
  3. When clinically appropriate, advocate for and where possible deliver, the prescription of full spectrum medicines on the NHS.
  4. Avail themselves of the offer of the MCCS to train free of charge and mentor any paediatrician who wishes to prescribe. The MCCS have set up a Resistant Epilepsy Cannabis Assessment Panel (RECAP) to assess individual cases. This panel has national cannabis experts and international paediatric neurologists including Dr. Carter Snead, Dr.Evan Lewis and Dr. Richard Huntsman. Contact can be made by emailing [email protected].

We ask that you, as the Secretary of State for Health & Social Care:

  1. Support our calls to the medical paediatric community as above.
  2. Work with the NHS and the wider medical community, including the MCCS to ensure that the barriers currently blocking NHS prescriptions to the cohort of paediatric epilepsy patients are broken down.

Yours,

Medical Cannabis Clinicians Society – Executive Committee and Members
Professor Michael Barnes (Chair) Consultant Neurologist & Consultant in Rehabilitation Medicine
Dr Evan Lewis Paediatric Neurologist (Canada)
Dr Sunil Arora Pain Consultant and Anaesthetist
Dr Danielle Gordon GP
Dr Leon Barron GP
Dr Niraj Singh Consultant Psychiatrist
Dr Rebecca Moore Consultant Psychiatrist
Dr Elizabeth Iveson Consultant Geriatrician
Dr Eliezar Okirie Consultant in Neurological Rehabilitation
Dr Beverley Fairclough Consultant Psychiatrist
Dr Nathan Hasson Consultant Paediatric Rheumatologist
Dr Luisa Searle Consultant Psychiatrist
Dr A Suleman GP
Dr Adam Bentley GP
Dr Brian Birch Consultant Urologist
Dr Harrison Offiong GP
Dr Tahzid Ahsan Consultant Psychiatrist
Dr Osama Hammer Consultant Psychiatrist
Dr Jake Timothy Consultant Neurosurgeon and Spinal Surgeon
Dr Ron Velthuis GP (the Netherlands)
Dr Sandeep Bolia GP
Dr Gurprit Atwal Consultant Histopathologist and Medical Examiner
Dr Julia Piper GP
Dr Prabha Moorti Consultant Psychiatrist
Dr Jen Anderson GP (Canada)
Dr Iqbal Mohiuddin Consultant Psychiatrist
Dr Andrew Sanger Bowen GP
Dr Elaine Tickle GP
Dr A J Wallis GP
Dr David Howells Consultant Psychiatrist
Dr Vimal Sivasanker Consultant Psychiatrist
Dr Anup Mathew Consultant Psychiatrist
Dr Caroline Bealing GP
Dr Maria Kallikourdi Consultant Psychiatrist
Dr Andrew Bradford Consultant in Neurological Rehabilitation
Dr Mark Smith GP
Dr Sharon Hadley GP
Dr Robert Greig Consultant in Emergency Medicine
Dr Naheem Bashir GP
Dr Anthony Ordman Consultant in Pain Medicine
Dr David Tang Consultant in Emergency Medicine
Dr Charlotte Cocks GP
Dr Neil Wright GP
Dr Graham Sanderson GP
Dr Sudha Balakrishnan Consultant in Rehabilitation Medicine
Dr Lauren Kelly Scientific Director, Canadian Childhood Cannabinoid Clinical Trials
Dr Tahira Ellahi Consultant Psychiatrist
Dr Simmi Sachdeva-Mohan Consultant Psychiatrist

 

Medical Cannabis Awareness Week 2020

During Medical Cannabis Awareness Week 2020, 1 – 8 November, we are supporting PLEA’s call for patients, doctors, colleagues from across the sector, friends and supporters to fight for fair access to medical cannabis, using the hashtag #MCAW2020.

During Medical Cannabis Awareness Week, PLEA is:

It’s time to end the inequality and ensure everyone who needs it has the opportunity to benefit from medical cannabis treatment. Medical Cannabis Awareness Week will take place during the first week of November every year. Visit www.medicalcannabisawarenessweek.org.uk for ideas about how you can get involved.

Take part

Society Chair Prof Mike Barnes and Dr Elie Okirie are hosting a special webinar for clinicians interested in supporting patients with medical cannabis treatments.

Register here – healthcare professionals only, please: https://zoom.us/webinar/register/WN_5rjqG_g9Qs2WquEMQNMX9Q

 

The Medical Cannabis Clinicians Society is a physician and expert-led nonprofit society dedicated to the education of clinicians on the topic of medical cannabis and therapeutic cannabinoids dedicated to supporting the medical and scientific community in the UK and globally with high-quality education, peer support and training to benefit patients who are suitable for this class of medication as an option.

We’re seeking Masters-level Information & Library Studies Research Student to lead a project for the Society.

The project

As our main remit is education, we aim to provide a searchable research database for medical cannabis and cannabinoid studies that have been published in peer-reviewed journals. This ranges from case reports and observational data sets through to RCTs and meta-analysis searchable by keyword or clinical/therapeutic area where cannabinoid-based medicines are being used.

In Canada, Vice-Chair Dr. Gordon worked with a master of library studies research student from the University of British Columbia in Canada on creating such a database for another area of medicine and this project was very successful.  We hope to complete a similar project with a student here in the UK. In the past, Dr. Gordon acted as the clinical mentor/supervisor for the student over two semesters and the project was completed as part of their curriculum.  The student was able to gain successful employment upon graduation immediately using this project as the showcase in their portfolio and recommendations from Dr. Gordon as well as being able to show their work on leading this project.

Why it is needed

Currently, there is no unbiased source of information for clinicians where they can search for the most up to date and also the most relevant peer-reviewed research in this topic area, which is still quite new and considered by many, a controversial area of medicine.

This service and capability is absolutely essential to ensuring clinicians have up-to-date information at their fingertips to help support their prescribing decisions in this area and keep abreast of new studies and findings to guide both clinical decisions as well as support policy change and continuing medical education needs.  Currently, many patients seeking medical cannabis for a treatment-resistant chronic illness in the UK are coming to their doctors knowing more about the published evidence base than their clinician.

Why we need you

The MCCS is run on a volunteer basis by leading expert physicians who also work full-time in their practices and do not have the database building technical skill set or time scales for the completion of this project.  Because we are a not-for-profit organisation with limited funds, we are unable to seek out a commercial partner to complete this project.

Apply now

To apply for the position, please contact the Society by emailing [email protected] with a cover letter which details your interest and qualifications. Expenses will be paid as part of this work and you will receive full support.

 

The Medical Cannabis Clinicians Society has today re-issued a newly updated version of Recommendations and Guidance on Medical Cannabis under Prescription.

Our guidelines set out the facts about medical cannabis treatments – history, evidence and prescribing information. In conjunction with the Society’s recently published Roadmap for UK Doctors – a step by step guide to prescribing this treatment – clinicians in the UK can feel reassured that they are supported every step of the way by an independent community of medical cannabis experts.

In the UK today, medical cannabis is being unfairly denied to patients in the NHS because the regulators do not understand the treatment. The Medical Cannabis Clinicians Society believe that people in the UK are being left to suffer because NICE, the Department for Health and Social Care and the NHS have thus far failed to provide doctors with fair and balanced guidelines when it comes to prescribing medical cannabis.

The MCCS guidance, updated and reissued today considers the extensive evidence available across a wide range of conditions. We hope this is welcomed by medical bodies and urge them to consider these expert recommendations.

Read and download the updated guidelines here.

For the first time in the UK, the Medical Cannabis Clinicians Society has today published an independent step-by-step guide to becoming a medical cannabis prescriber.

Available at www.ukmccs.org/prescribing, the Society’s expert committee brought together information from the Government, the NHS, NICE, Royal Colleges, licensed producers of medical cannabis products and training providers into one place for the first time, giving doctors a clear and rational route to prescribe.

Since medical cannabis was made legal in November 2018, the number of prescriptions for the treatment have remained extremely low as clinicians struggle to understand Government regulations and various guidelines issued by numerous bodies. Only around 50 people have benefitted from medical cannabis prescriptions, mostly in the private sector, since then.

The guide for clinicians is a roadmap to help you navigate the information currently available, developed by doctors who have now begun seeing the benefits of this treatment with their own patients in the UK. In conjunction with the peer support offered by membership of the Medical Cannabis Clinicians Society, this step-by-step guide – which will be regularly updated – provides doctors with the support and guidance required to begin prescribing.

In February, we will re-issue our own official guidance – Recommendations and Guidance on Medical Cannabis under Prescription, version 2, to support this prescribing information.

All information is correct at the time of writing (Jan 2020) and will be updated regularly. If you would like to suggest changes, additions or amendments to the published information, please do not hesitate to contact us. Share your feedback or request information and we will do our best to incorporate it into future versions.

You can also sign up as a member for just £90 per year.  If you’re not a clinician but want to know more then please sign up to our mailing list for regular updates.

The work of the Medical Cannabis Clinicians Society is made possible by unrestricted educational grant funding from our supporters. Find out more about becoming a supporter.

This week (Wednesday 13 November) we proudly bought together leading Medical Cannabis experts and healthcare professionals to our conference, ‘Medical Cannabis in Practice: Prescribing, practicalities and the patient experience’.

During the event, doctors pledged to become medical cannabis prescribers, to access education and explore and contribute to the evidence base for medical cannabis treatments at our first annual conference in London.

We welcomed attendees from across the sector who were interested in learning more about access to Medical Cannabis in the UK today and the day provided attendees with a practical insight into medical cannabis, discussed the global position of the drug’s evidence, the UK regulatory space, efficacy, research and the impact on patients.

Speakers included one of the industry’s leading experts, Professor David Nutt of DrugScience. He discussed the charity’s newly launched Project Twenty21 trial – Europe’s first and biggest national medical cannabis registry of 20,000 patients, creating the largest body of evidence for the effectiveness and tolerability of medical cannabis.

Professor Mike Barnes provided an introduction to medical cannabis and explored the global evidence and Executive Director Hannah Deacon talked about the frustrations in fighting for access of the drug for her son, Alfie Dingley. Dr Dani Gordon advised delegates on understanding and navigating medical cannabis and CBD treatments.

Dr Liz Iveson, complex care specialist and prescribing doctor shared stories of patients she is successfully treating with medical cannabis and Dr Leon Barron provided insights into the role of the GP in this space.

Professor Mike Barnes, Chair of the UK Medical Cannabis Clinicians Society, said: “We were pleased to welcome clinicians, healthcare and industry professionals to this conference that not only educated attendees on all the latest from the Medical Cannabis sector but provided a call to action for doctors to learn more about the life-changing benefits of this treatment.”

Supporting the conference were CiiTECH Ltd, a cannabis biotech company that focuses on discovering, developing and commercialising cannabinoid products for the global market and the leading Australian medical cannabis manufacturer, Little Green Pharma, who are now supplying the European medical cannabis market.

The MCCS is made up of some of the most respected medical cannabis clinicians in the country and ensure that clinicians have access to evidence, education, training, guidance and support to enable them to prescribe medical cannabis to patients who could benefit from this life-changing treatment.

Thank you to those who attended our conference, keep up to date on our website and social media channels for news of future events, workshops and conferences. You can also sign up to our mailing list to be the first to know more.

Join the Society.