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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. 

Hilary Latham from York uses medical cannabis treatment as part of her cancer treatment. Here, she tells her story.

In September 2009 I was diagnosed with breast cancer. One mastectomy later I was told the operation had been a success. I was one of the lucky ones… or so I thought.

Ten years later, in February, I moved to York to be near my two daughters, my new grandson, plus another grandchild on the way. Things were looking good. Aged 65, single (apart from the love of my life, my dog!), I was still fit enough to chase my grandchildren around the garden and continue my successful painting and decorating business.

As this year progressed I noticed that my mild asthma was getting progressively worse and by July I was feeling quite ill. A trip to the doctors was quickly followed up by admission to hospital where I was told the cancer was back and had spread to my liver. As a secondary cancer, I realised I wasn’t going to be so lucky this time. My oncologist confirmed I had stage 4 cancer and my life expectancy, without chemotherapy, was just a matter of months, and with successful chemotherapy I had perhaps one to two years.

Considering chemotherapy treatment

I had always thought that if the cancer returned, I wouldn’t have chemotherapy, I didn’t want to spend whatever time I had remaining in this life to be spent on an endless merry go round of potentially debilitating treatment. I also hadn’t planned on the additional complication of hypercalcemia. The cancer was affecting the amount of calcium in my blood, which can be life-threatening. I was very poorly.

As an active outdoorsy type of person, quality of life is so important to me. I realized that the prognosis of just a few months to live wouldn’t give me the time I needed to make some precious memories. I knew I would have to take the chemotherapy route to try to reduce the cancer, which in turn would hopefully reduce the calcium in my blood. In my life I’ve been blessed with a positive mind et, never been one to say, ‘what if?’ negatively. This was time to get the gloves on, time to fight!

Making that decision was so empowering. I couldn’t sit there waiting to fade away or fall prey to the debilitating chemotherapy. I understand many people have an easier journey than others on chemotherapy, but with my limited life expectancy, I needed to know my chemotherapy journey would enable me to have a quality of life to be active and enjoy my grandchildren.

 

Exploring medical cannabis treatments

In addition to being a decorator, I’m a complementary healthcare practitioner and I’ve had 20 years’ experience researching many potentially healing therapies. I believe that there are many avenues we can take to help in all areas of our health, and I was about to discover a great ally on my journey – medicinal cannabis. Do I hear an intake of breath, an occasional tut-tut, mutterings of illegal drugs at the mention of a natural plant that has been around for thousands of years?

To be absolutely correct, I didn’t ‘discover’ cannabis this year. I was already aware of its existence and had been for a couple of years. I was living in Portugal where the laws regarding cannabis are far more lenient than in the UK. Many people grow it for their own use and my neighbour at the time, a terminally ill lady with secondary cancer, purchased medicinal cannabis from Holland, another country that doesn’t look upon cannabis as an evil weed. I witnessed her final months and was amazed how well she managed – enjoying her life, socialising and being in her garden right up till the last two weeks of her life.

I have been in hospital a fair amount this year with the hypercalcemia and met some amazing people fighting for their lives with cancer. One lady mentioned to me she had bought some cannabis oil on the internet. At this time, I admit I didn’t have much faith in something I could ask Google for, so it was time for research.

 

Research, education and changing attitudes

I am blessed with a very special friend who has left no stone unturned on her quest to help me, spending hours and hours on research. That research led her first to America and then the UK – in particular to Prof Mike Barnes and The Medical Cannabis Clinics. I was told I would need to be referred by my GP to see a specialist. I can imagine the horror on some faces at the thought of approaching their GP to get cannabis!

Luckily for me,  my GP is something else. He goes that extra mile to help his patients and after his initial ‘rabbit in headlights’ reaction, he set about doing his own research and put me in touch with Dr Iveson in York.

 

The journey to treatment

Dr Iveson is a Consultant Physician specialising in complex care and symptom management particularly in the elderly and patients with stroke and long term conditions. She is working with the Medical Cannabis Clinician’s Society and charity Drug Science to further develop research into medical cannabis treatment and help educate and share her experience with fellow doctors.

During my initial consultation with Dr Iveson I was most impressed by her care and professionalism. My target was to take medicinal cannabis to help alleviate the potential side effects of chemotherapy such as nausea and sickness, plus help with insomnia and anxiety. I left with confidence in knowing I had made a major step forward towards a better quality of life during the daunting journey of chemotherapy.

After my initial delight in the positive attitude of my GP, I didn’t anticipate the reaction of others when I told them I was taking medicinal cannabis. Because of my research and openness to cannabis, I hadn’t realised the stigma behind something so natural. There is something about the word cannabis that really gets a reaction, either a snigger behind the hand or from friends warning me not to mention drugs in front of their partners. My favourite though is the ‘rabbit in headlights’ reaction which I received when I took my prescription to the chemist, which was followed by much huffing and puffing from the pharmacist on duty. But, the pharmacist did some research and realised he was part of something quite ground-breaking. It’s amazing what a bit of education can do!

 

The impact of medical cannabis treatments

I could hardly wait to begin taking my prescription. I am taking a balanced CBD:THC oil at night and a high CBD oil during the day to manage my symptoms and I am slowly titrating the dose upwards with support and close monitoring from Dr Iveson. It took a short while to appreciate all the benefits but it has been quite amazing.

My mouth ulcers have completely disappeared, I’m sleeping very well, and I’m managing my nausea and sickness so much better. One bonus I didn’t realize is that medical cannabis is an anti-inflammatory and opens the airways. It has helped my asthma and my breathing is so much better. I’m in a very positive state of mind and that in itself is a very powerful tool. My oncologist is aware I am taking medicinal cannabis and in the future perhaps we may see a great relationship forming between all health professionals working towards a better quality of life for all.

 

Medical cannabis for all

Medicinal cannabis is not cheap. I had some savings for a rainy day – but I didn’t think that rainy day would come so soon. My savings won’t last forever and I can only hope that in the not so distant future, the price will come down as the demand goes up. And one day, I hope it will be available to all on the NHS.

Hannah Deacon, Executive Director, whose son, Alfie Dingley was the first patient in the UK to receive a permanent cannabis licence, tells her story.

When Alfie was born, he spent the first four months of his life in hospital, lived on and off life support and experienced his first seizure at just eight months old.

Alfie lives with a very rare form of epilepsy and, prior to medical cannabis treatment, experienced more than 500 seizures a month. Now, Alfie, aged eight, lives a relatively normal life thanks to using cannabis oil treatment.

After trying various treatments, anti-epilepsy drugs, a ketogenic diet and immuglobulins, the only treatment that reduced his seizures was a steroid called IV Methyl Prednisone that can cause severe side effects, including mood swings, restlessness and headaches.

At age five, Alfie’s condition got worse. He was visiting the hospital every week and receiving up to 25 doses of steroids a month.

Discovering medical cannabis

In 2019, Alfie’s mum Hannah, took action. After being warned by doctors around the dangers of his seizures and treatment, Hannah began to research other options for her son.

Hannah said: “When doctors advised us on the dangers of Alfie’s treatment, I needed to look into other options. I started to research epilepsy treatments and medical cannabis kept coming up – and felt confident that it was a positive option.

“I wanted to know that whatever happened, I had done everything I could to keep Alfie alive.”

After a series of setbacks from her GP, Hannah was eventually given permission to take Alfie to Holland for medical cannabis where he was assessed and immediately prescribed with the treatment he so desperately needed – Bedrolite CBD oil.

 

The beginning of Alfie’s miracle

After five weeks of medical cannabis treatment Alfie experienced 17 days without a seizure – the longest amount of he had ever gone without experiencing one.

Hannah said: “It was the beginning of our miracle.

“As time went by, we put up the dose of CBD and Alfie started to get better. We then added in a small amount of THC and he did even better. Treatment with cannabis oil has given Alfie a much greater quality of life and significantly reduced the number of seizures he suffers.”

 

Fighting for medical cannabis to be available on the NHS

Returning home, Hannah was ready to fight the biggest battle she had ever had – fighting for medical cannabis to be available on prescription for patients.

Hannah started work with the campaign group,’ End Our Pain’.  Appearing on national TV channels, she made BBC Breakfast where she told Alfie’s story.

After meeting with the Home Office but getting nowhere, Hannah submitted the group’s petition to former Prime Minister, Theresa May, and subsequently met with her.

 

Meeting Professor Mike Barnes

Alfie’s doctor was unfortunately unable to help due to the trust they worked for however, it was then when Hannah met Neurologist and Professor Mike Barnes. When Hannah told Mike about Alfie’s story, he agreed to help.

Hannah said: “Mike stood forward when no one else would. He gave his time and expertise for free because he felt it was the right thing to do. He has now become a lifelong friend and we now work together to improve access to medical cannabis for patients across the UK.”

 

Law changes for medical cannabis

In November 2018, after a long fight – the law changed which now allows medical cannabis to be prescribed as a ‘special’ by a consultant. Although around 500,000 people in the UK have epilepsy, not one more person has been prescribed the treatment on the NHS since this case.

The NHS is yet to offer medical cannabis on prescription due to very restrictive guidelines for clinicians. There is still a long way to go to ensure more people like Alfie can access medical cannabis to drastically improve the quality of their lives.

Join the Medical Cannabis Clinicians Society at this exciting conference for clinicians interested in becoming prescribers and for sector professionals and others interested in the growth of access and the reality of medical cannabis in the UK today.

At Medical Cannabis in Practice: Prescribing, practicalities and the patient experience, you’ll learn from those at the heart of this new industry – from licensed producers working to grow and develop treatments, those working to import and ensure access through our pharmacies, and from doctors prescribing life-changing treatments.

Click to buy tickets now

Speakers will include Tonia Antoniazzi MPProf. Roger G Pertwee, Chair, Prof. Mike Barnes, Vice-Chair, Dr Dani Gordon and MCCS Committee Members Dr Leon Barron, GP, Dr Liz Iveson, Consultant Complex Care Physician, Dr Rebbeca Moore, Psychiatrist and Hannah Deacon, Executive Director and Patient Advocate.

With further speakers from across the medical cannabis sector soon to be announced, buy your tickets today and secure your place at this not-to-be missed event.

Interested in joining The Medical Cannabis Clinicians Society?

Membership is open to clinicians, nurses and other healthcare professionals interested in medical cannabis treatments. With peer support, training, evidence and exclusive discounts to events and conferences, find out more and join today by emailing [email protected].

You can also sign up during the event.

Chair Prof Mike Barnes, Vice-Chair, Dr Dani Gordon & Committee Member, GP Dr Leon Barron join Dr Christian Jessen & Dr Callie Seaman on The Medical Panel this weekend.

On Saturday 14 September from 12:45pm, the panel will take to the Business Pro Stage to explore medical cannabis in the UK today.

Find out more and book your place here: www.hempandcbdexpo.co.uk/buy-tickets 

Interested in joining The Medical Cannabis Clinicians Society?

Membership is open to clinicians, nurses and other healthcare professionals interested in medical cannabis treatments. With peer support, training, evidence and exclusive discounts to events and conferences, find out more and join today by emailing [email protected].

The Medical Cannabis Clinicians Society Executive Committee can often be found speaking at conferences all over the world. Find out where to find them.

Upcoming conferences

14 September 2019, Birmingham
The Hemp & CBD Expo
Speaking: Professor Mike Barnes, Dr Dani Gordon, Dr Leon Barron

21 September 2019, University of Limerick
Medical Cannabis Symposium
Speaking: Professor Mike Barnes

4-5 November 2019, Malta
Medical Cannabis World Summit
Speaking: Professor Mike Barnes & Hannah Deacon

13 November 2019, London
Medical Cannabis: Prescribing, practicalities and the patient experience
Speaking: All committee members plus special guests

28 November, Bristol
Bristol Medical Cannabis Conference
Speaking: Professor Mike Barnes

26 November 2019, Leeds
CMSUK 2019 Conference & AGM ‘Creating Links & Breaking Boundaries’
Speaking: Professor Mike Barnes

4 December 2019, London
CannaBiz Innovation Hub 
Speaking: Professor Mike Barnes & Hannah Deacon

THE MEDICAL CANNABIS CLINICIANS SOCIETY RESPONSES TO:

Draft NICE guidelines into Cannabis-based medicinal products

Reviewing the guidelines, Prof Mike Barnes, leading medical cannabis expert and Chair of the Medical Cannabis Clinicians Society said,

“The draft guidelines produced today by NICE are very disappointing but sadly predictable. Many NICE committee members had already expressed negative views about cannabis as a medicine, and those with positive views were excluded from the process.

It is a pity the Committee does not understand the nature of the family of medical cannabis medicines and failed to take into account alternative, valid sources of evidence. It relies solely on the pharmaceutical model of the randomised controlled trials which is not an appropriate methodology for the assessment of cannabis efficacy.

This is a sad day for many tens of thousands of people in the UK who are benefitting from, or who would benefit from wider availability of cannabis medicine.”

Dani Gordon, Vice-Chair Canadian medical doctor specializing in cannabis medicine, now based in the UK said, 

“These guidelines are very disappointing as they do not reflect what we see clinically treating patients with chronic pain conditions. It also fails to recognise that this is a quality of life medication, hugely beneficial for helping improve people’s level of functioning who are dealing with chronic serious medical conditions which have no cure and even best drug therapy often fails to improve quality of life in any measurable way.

The guidelines are also unnecessarily restrictive in terms of the types of conditions where medical cannabis might be prescribed such as for complex symptom clusters including pain and anxiety.  These complex symptom clusters and use of cannabis-based medicines in the real world practice of medicine and their efficacy cannot be adequately measured in a randomised controlled trial environment.

They fly in the face of the incredible results I have seen in symptom management and quality of life using cannabis based medicinal products to treat thousands of patients in my Canadian physician-referral medical practice and do a real disservice to patient-centred care.”

Hannah Deacon, Executive Director and Patient Advocate, whose son, Alfie Dingley was the first patient in the UK to receive a permanent cannabis licence and is now only one of two patients with an NHS prescription, said;

“I’m extremely disappointed. There are hundreds of thousands of people using cannabis-based medicines across the world and it’s having an enormously positive impact on their health. Many countries have legalised medical cannabis industries – America, Canada and other G7 countries – they see the evidence is good enough. The UK is insisting on reinventing the wheel for no reason – and the people who are suffering are patients.

In the UK, I’m supporting 20 families who are trying to secure prescriptions for their children and over half have now had private prescriptions – what’s the provision for them? They can’t afford to continue paying over £1000 a month or travelling to Europe to illegally access this medicine. There is no empathy at all in these guidelines – they will force people to criminalise themselves and it’s making vulnerable people more vulnerable.”

BARRIERS TO ACCESS NHS REVIEW:

Prof Barnes said:

“This is a positive review that recognises the need for accepting different but valid evidence for the efficacy of cannabis as a medicine.

It’s sad to compare this forward-looking and positive review of cannabis medicine by the NHS with sadly outdated draft Nice guidelines into Cannabis-based medicinal products also released today.  Nice has surely reached its sell-by date.

I hope that Matt Hancock takes advice from his own review and rejects the outmoded and outdated draft Nice guidelines.”

Hannah Deacon said;

“I find it shocking that on the day the Nice guidance is released – which is extremely restrictive and recommends against prescriptions unless randomised controlled trials take place – that the NHS review commissioned by Matt Hancock completely contradicts this guidance.

This NHS review recognises that there is a blockage on prescriptions and makes some good recommendations of how the THE MEDICAL CANNABIS CLINICIANS SOCIETY RESPONSES TO:
Draft NICE guidelines into Cannabis-based medicinal products
Barriers to accessing cannabis-based products for medicinal use on NHS prescription, commissioned by Matt Hancock MP
Draft NICE guidelines into Cannabis-based medicinal products
Reviewing the guidelines, Prof Mike Barnes, leading medical cannabis expert and Chair of the Medical Cannabis Clinicians Society said,

“The draft guidelines produced today by NICE are very disappointing but sadly predictable. Many NICE committee members had already expressed negative views about cannabis as a medicine, and those with positive views were excluded from the process.

It is a pity the Committee does not understand the nature of the family of medical cannabis medicines and failed to take into account alternative, valid sources of evidence. It relies solely on the pharmaceutical model of the randomised controlled trials which is not an appropriate methodology for the assessment of cannabis efficacy.

This is a sad day for many tens of thousands of people in the UK who are benefitting from, or who would benefit from wider availability of cannabis medicine.”

Dani Gordon, Vice-Chair Canadian medical doctor specializing in cannabis medicine, now based in the UK said,

“These guidelines are very disappointing as they do not reflect what we see clinically treating patients with chronic pain conditions. It also fails to recognise that this is a quality of life medication, hugely beneficial for helping improve people’s level of functioning who are dealing with chronic serious medical conditions which have no cure and even best drug therapy often fails to improve quality of life in any measurable way.

The guidelines are also unnecessarily restrictive in terms of the types of conditions where medical cannabis might be prescribed such as for complex symptom clusters including pain and anxiety. These complex symptom clusters and use of cannabis-based medicines in the real world practice of medicine and their efficacy cannot be adequately measured in a randomised controlled trial environment.

They fly in the face of the incredible results I have seen in symptom management and quality of life using cannabis based medicinal products to treat thousands of patients in my Canadian physician-referral medical practice and do a real disservice to patient-centred care.”

Hannah Deacon, Executive Director and Patient Advocate, whose son, Alfie Dingley was the first patient in the UK to receive a permanent cannabis licence and is now only one of two patients with an NHS prescription, said;

“I’m extremely disappointed. There are hundreds of thousands of people using cannabis-based medicines across the world and it’s having an enormously positive impact on their health. Many countries have legalised medical cannabis industries – America, Canada and other G7 countries – they see the evidence is good enough. The UK is insisting on reinventing the wheel for no reason – and the people who are suffering are patients.

In the UK, I’m supporting 20 families who are trying to secure prescriptions for their children and over half have now had private prescriptions – what’s the provision for them? They can’t afford to continue paying over £1000 a month or travelling to Europe to illegally access this medicine. There is no empathy at all in these guidelines – they will force people to criminalise themselves and it’s making vulnerable people more vulnerable.”

BARRIERS TO ACCESS NHS REVIEW:
Prof Barnes said:

“This is a positive review that recognises the need for accepting different but valid evidence for the efficacy of cannabis as a medicine.

It’s sad to compare this forward-looking and positive review of cannabis medicine by the NHS with sadly outdated draft Nice guidelines into Cannabis-based medicinal products also released today. Nice has surely reached its sell-by date.

I hope that Matt Hancock takes advice from his own review and rejects the outmoded and outdated draft Nice guidelines.”

Hannah Deacon said;

“I find it shocking that on the day the Nice guidance is released – which is extremely restrictive and recommends against prescriptions unless randomised controlled trials take place – that the NHS review commissioned by Matt Hancock completely contradicts this guidance.

This NHS review recognises that there is a blockage on prescriptions and makes some good recommendations of how the NHS can improve access for families such as mine.

The contrast between these two very important publications is very worrying. There is no joined-up thinking and in the middle of all this mess there are vulnerable families with very sick children who are being left to suffer.”

END

The Medical Cannabis Clinicians Society believes that everyone who could benefit from medical cannabis should have access to it. Our mission is to give clinicians access to evidence, training, expert guidance, peer support and licensed product information so they can prescribe life-changing medical cannabis treatments to all patients in the UK. The Society is an expert-led, independent, not-for-profit community, dedicated to bringing this safe, legal and effective medicine to people living with chronic conditions.
Visit ukmccs.org for more information.
For further comment or response, please contact Kate Thorpe on 07890172128 or email [email protected]

Join the Medical Cannabis Clinicians Society at this exciting conference for clinicians interested in becoming prescribers and for sector professionals and others interested in the growth of access and the reality of medical cannabis in the UK today.

At Medical Cannabis in Practice: Prescribing, practicalities and the patient experience, you’ll learn from those at the heart of this new industry – from licensed producers working to grow and develop treatments, those working to import and ensure access through our pharmacies, and from doctors prescribing life-changing treatments.

Click to buy tickets now

Speakers will include Vice-Chair, Dr Dani Gordon, Executive Committee Members GP, Dr Leon Barron, Dr Liz Iveson, Consultant Physician specialising in complex care, Chair, Professor Mike Barnes and Executive Director and Patient Advocate, Hannah Deacon, plus many more to be announced.

With further speakers from across the medical cannabis sector soon to be announced, sign up for your early-bird tickets today and secure your place at this not-to-be missed event.

Interested in becoming a member?

Please email us with your contact details at [email protected] – we’ll be in touch in the next couple of weeks with joining instructions

MCCS members joining before November 2019 can purchase tickets at early-bird rate of £90. But – tickets are limited, so don’t miss out – get yours today!

https://www.eventbrite.co.uk/e/medical-cannabis-prescribing-practicalities-and-the-patient-experience-tickets-64801554193

The Medical Cannabis Clinicians Society’s mission is to provide clinicians with the education, evidence, expert support network and licensed product information they need to safely and confidently prescribe medical cannabis to patients in the UK.

At our informal event on Wednesday 26 June – during European Cannabis Week – licensed producers, investors and those interested in knowing more about the benefits of supporting our doctors are welcome to attend.

The event is your opportunity to meet pioneering specialist clinicians, the first to prescribe medical cannabis products in the UK.

Speakers Professor Mike Barnes, Chair, Dr Dani Gordon, Vice Chair and Hannah Deacon, Executive Director, will introduce the society’s plans for 2019 & beyond.

To find out more, sign up via Eventbrite by clicking here.

With your support, we’ll achieve our mission to provide clinicians with education, evidence, expert support & licenced product information

To stay up to date, please sign up to our mailing list here, or connect on LinkedIn or Twitter @ukmccs.

Since publishing recommendations and guidance with the All-Party Parliamentary Group on Medical Cannabis under Prescription in November 2018, the Society has been working hard to develop its terms of reference, education programme and other membership benefits.

With a new website in development, over the coming months the Society will be sharing further information, advice and support for clinicians interested in knowing more about medical cannabis.

The new website will see a searchable evidence hub, regular expert advice and for members, a secure area with prescribing guidelines and access to a peer support network giving you real-time guidance from medical cannabis experts.

To stay up to date, please sign up to our mailing list here, or connect on LinkedIn or Twitter @ukmccs.