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Sue Evans from York uses medical cannabis treatment to alleviate chronic pain caused by cancer.  Here, she tells her story.

Sue Evans

In December 2015 I was diagnosed with breast cancer in my right breast. I underwent a lumpectomy and a 4 week intensive course of radiotherapy.  I refused chemotherapy because I considered it to be too invasive a treatment for me. In 2016 I did however, begin an endocrine treatment (Tamoxifen) to help prevent a resurgence of the cancer.

Sadly for me, one week into this endocrine treatment I suffered liver failure: I was told I had three years to live unless my liver repaired itself.  I stopped the endocrine treatment, cut out alcohol and started an alkaline diet. Thankfully my liver recovered within three months and still functions well, however I was left with a threat of an associated condition called Varices, a weakening of the veins which can cause internal bleeding. To date, my follow up breast scans continue to be clear, which is positive.

Turning to CBD for chronic, long-term pain 

In 2018, I developed pain in my right pelvic area which was later aggravated by a fall I had on an icy path. A bone density scan I had previously had in 2017 had revealed mild Osteopenia, so I attributed the pain in my pelvis to that condition and I did not consult a Doctor.

I did not want to rely on long term conventional painkillers for my hip because I was concerned they could aggravate the Varices threat which later down the line proved to be correct and also my liver, so I researched CBD oil as an alternative pain relief.  This was no easy feat, and an expensive one, as I discovered that many brands and strengths below 1000mg did not have any effect at all on my pain. However, after two months of trailing different types I did find a CBD full spectrum (no THC) 1200mg product that instantly relieved the pain, but I had to take frequent dosages to completely control it. But it did so effectively.

In November 2019 I fell ill with an unidentified infection which caused much pain in my lower left abdomen. Despite various tests, doctors were unable to diagnose the nature of the infection, which resulted in three different courses of antibiotics being prescribed, over a period of two months. I ceased CBD oil at this time as I didn’t know if it would interfere with the medication and therefore resorted to conventional pain killers to alleviate both the abdominal pain and the chronic pain in my right hip.  Sadly, the infection did not go away and after two months of this excessive pain I was rushed into hospital in January 2020, with severe internal bleeding in the stomach and upper digestive tract.

Secondary cancer diagnosis & prescription medical cannabis treatment 

The internal bleeding was treated successfully and the intravenous antibiotic I was given in hospital seemed to clear up the mystery infection. However, during my week of hospitalisation a scan of my abdomen revealed bony metastases (secondary breast cancer) in my right pelvis and lower spine. Unbeknown to me this had been the cause of the chronic pain in my right hip. So despite my breast scans remaining clear it appears the cancer had resurfaced in my spine and pelvic area.

Following a consultation with an Oncologist I agreed to take a different Endocrine treatment (Letrezole), to manage the cancer going forward. I also resumed the CBD oil for the pain relief. I am unable to take conventional pain killers due to the Varices, so I realised that if the cancer got worse I would potentially need a stronger CBD medication to control any increased pain, which is what prompted me to look for a private, qualified medical cannabis consultant.

A breast cancer nurse assisted me with this task and I was introduced to Dr Liz Iveson, a member of the Society’s expert committee. Since March 2020 I have been taking prescription Bedrolite CBD oil to manage the chronic pain in my pelvis. The medical CBD is stronger than the self-medicating CBD oil I had taken previously, so I require a much lesser dose to achieve the same level of pain control.

I now take the Letrozole endocrine treatment, which luckily I have not had an adverse reaction to, and the medical cannabis for the pain relief. My three monthly checks and blood tests show that the cancer is being effectively managed.

Successfully managing pain with prescription CBD

I personally have not experienced any side effects from either non medical or medical cannabis. Though I sleep much better at night as a result of CBD, it does not cause drowsiness during the day, so it does not affect my ability to drive safely. Also my ongoing blood tests and scans show that it is not interfering with the endocrine medication I take.

To sum up my experience with CBD oil, it allows me to enjoy a pain-free, full life rather than a painful existence. I very much enjoy walking as a means to relax; with CBD oil I can walk 6 or 7 miles easily with no problem at all. Without CBD oil I struggle to walk a mile and I limp quite profusely, even getting into a standing position is difficult.

CBD treatment makes a huge difference to the quality of my life, keeping a positive attitude does too. I refuse to dwell on how many years I will live with cancer. I do not want to waste my life thinking about the day I will die. I enjoy my life and intend to continue doing so.

As a last point I would like to counter argue the placebo effect that some label CBD with. In my early days of research I had to try various brands and strengths of CBD until I found one that worked. This was extremely time consuming and very costly. If, I had been of a placebo mindset, trust me I would have settled on the first brand I tried and saved myself a whole lot of time and money!

I can only sing the praises of medical cannabis from my personal experience, and would urge anyone suffering chronic pain to at least try it. You may be surprised at what a beneficial difference it can make to one’s quality of life and mental well being.

Thank you for reading my story.

Sue Evans is a member of the Society’s Patient Committee.

 

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 is an independent community of medical cannabis pioneers – the first prescribers of this treatment in the UK. We believe that every patient who could benefit from medical cannabis should have access to it.

Though we are primarily are a society for clinicians and health care professionals, we think it’s crucial that patient voices are heard. To ensure we remain an inclusive, relevant, informed, and open organisation, we’re launching a patient committee, made up of medical cannabis patients and patient advocates from across the UK.  This patient committee will take the lead on our work with independent patient groups from across the sector. 

Members of the MCCS Patient Committee will be required to attend a bi-monthly online meeting where we will discuss priorities for the Society, feedback on publications and projects and discuss relevant developments. Membership is limited to 10. To apply, please email [email protected] with a brief cover letter explaining why you would like to be involved.  The closing date is Wednesday 15 July 2020. 

PLEA (Patient Led Engagement for Access) has been established to challenge the inequalities in access to cannabis-based medicinal products in the UK.

Despite the 2018 schedule change allowing doctors to prescribe medicinal cannabis, patients are still faced with multiple barriers, including misinformation, stigma, and financial constraints, preventing access to potentially life-changing medicine.

PLEA’s mission is to advocate for quality of life with medicinal cannabis, aiming to enable patients to access their medicine free from the harms of stigmatisation, misinformation and financial barriers.

Patients are in need of assistance to navigate complex healthcare systems, clinicians wish to learn from patient experiences, and research is needed to evidence the efficacy and safety of medicinal cannabis. PLEA collaborates with patients, clinicians and researchers as one community, sharing knowledge and experiences in order to advance access to medical cannabis.

As with The Medical Cannabis Clinicians Society, PLEA is a non-profit, volunteer-run community interest company, enabling the team to advocate for patients free from commercial interference.

Working closely with Drug Science as a member of their Medical Cannabis Working Group, PLEA will support patients accessing Project Twenty21, Europe’s largest body of evidence for the safety and efficacy of prescribed medicinal cannabis.

Find out more about please visit www.pleacommunity.org.uk.

 

*March 2021 Update: Members of the Medical Cannabis Clinicians Society can now access exclusive medical cannabis insurance under our low-cost Group policy. Please read our updated information here.

At The Medical Cannabis Clinicians Society, we’re dedicated to providing straightforward guidance, information and support for clinicians wishing to prescribe medical cannabis.  Doctors often come to us with questions about their professional indemnity and insurance coverage, with some insurers not including medical cannabis treatments in their packages.

In England, doctors working for NHS trusts and health and social care bodies are provided with indemnity insurance through the Clinical Negligence Scheme for Trusts (CNST). Similar arrangements are in place for Scotland, Northern Ireland, and Wales.

Insurance for private practice

When it comes to being insured for prescribing medical cannabis, due to current prescribing restrictions, things are different. As medical cannabis in the UK is currently only available privately, doctors working outside of the NHS – often for the first time – have questions about how to arrange insurance and indemnity which covers this treatment.

The General Medical Council states that doctors working in private practice in the UK must have “adequate and appropriate insurance or indemnity arrangements in place covering the full scope of your medical practice”. This means that even if doctors are working privately within an NHS or health and social care body premises, they must still be covered.

Prof Michael Barnes, Chair of the Medical Cannabis Clinicians Society said, “Apart from two specific medications, Sativex and Epidiolex, medical cannabis – along with many other treatments – is at present classed as an unlicensed medicine. Doctors prescribing unlicensed products take full clinical responsibility for any consequences of the prescription and might not be covered by professional indemnity insurance. This is something that causes many clinicians concerns and prevents more widespread prescribing.

 Medical cannabis is a safe treatment with often significant benefits and few side effects. Clinicians can be reassured that if they prescribe within the legal parameters then they are very safe – although they still need insurance cover.”

Finding insurance that covers medical cannabis prescribing

When you are looking for new insurance, which includes medical cannabis, as a doctor operating in the private sector for the first time, or you’re renewing your existing coverage, it’s important to choose your provider well.

If doctors are already working privately, with insurance already in place, then it is important to check with your insurer that the changes in your scope of practice – i.e. starting to prescribe medical cannabis products – are included in your existing coverage.

Next steps

The route to becoming a medical cannabis prescriber in the UK can be a complex one, with regulations and rules to follow to ensure you are on the right side of the law. From being aware of the guidelines on medical cannabis to following the route for controlled drugs, read our guide ‘How to prescribe medical cannabis’, available here.

Read How to prescribe medical cannabis.

 

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.

The first MCCS and Drug Science roadshow took place in Birmingham on 27 February 2020.

Dr Leon Barron, Dr Elie Okirie, David Badcock (Drug Science) Hannah Deacon hosted the event which was attended by clinicians, medical students and those on placements, professionals from the pharmaceutical industry and other sector organisations. Over 50 attendees joined us at the event, which took place at The Medical School at The University of Birmingham. 

Dr Leon Barron presented an overview of medical cannabis – its history and evidence, as well as the role of the GP. Dr Elie Okirie talked about his route to becoming a prescriber, and presented a case study of a patient receiving medical cannabis treatment in the Midlands. Hannah Deacon talked about her experience as a patient advocate and her journey to change the law for her son, Alfie, and David Badcock introduced Project Twenty21.

Over the coming weeks we’ll be sharing further dates for Leeds, Brighton, Liverpool, Newcastle and Bristol. Attendance at our roadshow events is just £10, and it’s free for Society and Drug Science members.

Thanks to the GP Society at The University of Birmingham for hosting us.

The Medical Cannabis Clinicians Society and Drug Science are on tour from February 2020, bringing medical cannabis education and practical guidance to audiences across the UK.

Clinicians, medical students, scientists, researchers, professionals and patients curious about medical cannabis and the current state of prescribing, evidence and availability in the UK are welcome to join us at this practical introduction to medical cannabis and CBD.

As well as gaining an overview of the history and evidence of medical cannabis and CBD, you’ll hear from doctors currently prescribing this treatment, from scientists and researchers dedicated to creating the largest body of evidence for the effectiveness of medical cannabis in Europe and from medical cannabis patients currently being prescribed the treatment.

Book your tickets

With our first event taking place in Birmingham on 27 February, we’ll also be visiting Liverpool in March with dates still to confirm in Bristol, Cardiff, Edinburgh, Glasgow, Leeds, Manchester, Newcastle, Northampton and Sheffield.

Speakers include:

Society Executive Committee members:

Drug Science

Medical Cannabis Clinicians Society and Drug Science Community Members attend for free

Clinicians who sign up to become members of The Medical Cannabis Clinicians Society at the event will receive £10 off the usual £90 per year membership fee – making attendance at this event free of charge.

All Drug Science Community Members are invited free of charge. Our Community are our regular donors who commit £10 or more a month, and who play a critical role in helping us achieve our mission. To join, community, please see further details here. Once you become a member, you will be emailed your personal access code to attend this event.

If you are a member of either group, please contact us for your free access code.

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.