Despite a temporary solution having been reached, the long-term future of children’s medical cannabis prescription remains in doubt. Sweet Pink CBD asks, what will the Government do to support these families?
For almost three years, children suffering with severe epilepsy and other medical conditions have benefited from medical cannabis. The prescriptions have enabled children and their families to have as normal a life as can be.
However, as the UK leaves the European Union this month, UK children will no longer receive their prescriptions.
Medical cannabis prescriptions have been fulfilled by EU countries for almost three years and as of this week, they are no longer recognised.
Almost two weeks before Christmas, the Department of Health and Social Care dismissed the concerns from families of children who access the life-changing treatment, after receiving a letter stating ‘families should find alternative medicines’. Although this may seem like a simple task; it couldn’t be further from the truth.
Bedrolite is used by children living with severe medical conditions and is the only medicine which halts their life-threatening seizures. Cannabinoids and terpenes found in the cannabis plant create very specific medical properties. This is what makes the prescription so powerful. Switching children to a new medicine could have catastrophic results.
Severe epilepsy is caused by a number of conditions. The young daughter of Sweet Pink CBD’s founder, Indie-Rose, lives with Dravet Syndrome. This condition causes Indie to suffer from hundreds of seizures a day, along with more severe neurological symptoms.
Hannah Deacon, friend of Sweet Pink CBD and a campaigner at the forefront of medical cannabis told The Guardian: “I am facing the fact that my son might go into refractory epileptic seizures again which can kill people. That’s how dangerous this is.
“Life is definitely not rosy but his quality of life since being on a medical cannabis prescription has been amazing. Alfie hasn’t been near a hospital for two years.”
Of course, the UK is currently facing a difficult future with the continuation of the COVID-19 pandemic. But the UK Government seem to be unaware of the toll Brexit is having on children in need of medical cannabis. It’s as if no thought was put into their future.
Tannine Montgomery, Sweet Pink CBD Founder, said: “What are we to do? Our children have had a fantastic quality of life in comparison to what would have been, had they never received medical cannabis. Now, that quality of life is being taken away from them.
“Although I produce my own CBD wellbeing products, an NHS prescription for medical cannabis products such as Bedrolite is vital to children like Indie-Rose and Alfie.”
In a bid to find a solution for families in the UK, Hannah Deacon has written to Boris Johnson; unfortunately to no avail. Receiving an automated response stating ‘The Prime Minister doesn’t reply to people that aren’t his constituents’.
Although the Department of Health have said alternative cannabis-based medicines are available in the UK, they don’t understand these alternatives won’t suit every child. Each and every cannabis-based product is different. Each and every medical cannabis patient reacts differently to their prescription.
The Dutch Government recently announced current medical cannabis patients will continue to have their prescriptions fulfilled until 1 July 2021. While this provides patients with a reprieve, more permanent solutions need to be explored by our Government to ensure everyone has fair access.
So, we ask: what will the Government do to support families who are in desperate need of medical cannabis prescriptions from the EU?
Cannabis has the capacity to transform lives through its effect on mind and body
OPINION: We’re only just scratching the surface in terms of the benefits of cannabis, says Dr Niraj Singh
Dr Niraj Singh, a consultant psychiatrist and member of the Medical Cannabis Clinicians Society, shares his journey prescribing cannabis over the last 18 months.
For me medicine has been a calling since adolescence, when I took pride in helping people.
Not providing them with a treatment protocol or management plan as we call them in medical language, but just to be around to help, lend a hand or just listen to them about their troubles.
As a medical student I was fortunate to have access to an education of the wonderment of the human body, its functions, how things malfunction and how they get better.
What has always struck me though was the distinct separation of specialties. We have a heart doctor, a lung doctor, a bone doctor, a brain doctor and the list goes on and on.
Clearly the fall out of entrenched Descartian thinking, whilst the mind and body had its clear separations in service provision, the fact is that the two are united and inseparable.
Think of anxiety and the physiological effects on our body, with increased heart rate and blood pressure. Or even gut health and the effect of mental health through the gut brain axis.
Undeniably a doctor has to focus on both mental and physical health to truly assist the patient in healing.
The symbiotic relationship
Having realised I had two left hands and surgical practice was a non-starter, I set my mind on general practice.
But working on a stroke ward as a house officer (the first year of work following receipt of a medical degree) and spending large amounts of time just listening to patients, many struggling with depression and anxiety, I soon realised that psychiatry was my path.
I didn’t have an easy time and was met by opposition from several quarters suggesting I reconsider my choice.
Sticking to my guns though, I took up a psychiatry rotation and eventually higher training in neurodevelopmental disabilities treating people who struggle with conditions such as depression, anxiety, OCD, bipolar disorder, schizophrenia, ADHD and treating mental health problems in autistic patients.
I count my blessings every day that I have the opportunity to help others as well as learn from them.
Medicine in my view shouldn’t just be paternalistic or maternalistic, though this approach has its place. It’s symbiotic, because it is also aided by the patient’s understanding of what is going on with them, if they are able to express this.
Healing starts from the beginning of the interaction, not from the first prescription.
We are what we do
Another important saying I’ve always related to is the importance of having two ears and one mouth, so one can listen twice as much as they speak. We all have the innate capacity to heal and also have the capacity to help others heal. Nature is the primordial force.
In my practice, lifestyle is vitally important. The old saying ‘we are what we eat’ has relevance. I’d add ‘what we do’ also.
Giving attention to exercise, sleep hygiene, hobbies, work and recreation, has clear impact on the mind and body.
The use of plants for healing has been around for thousands of years. Many of us know the benefits of turmeric, nigella sativa, Echinacea and the list goes on.
Cannabis has been used for an uncountable number of years for healing. A plant in our natural environment, which works in synergy with our bodies to relieve illness, heal and even have health-promoting benefits.
It has multi-systemic effects through the endocannabinoid system, the system that underlies the entire major systemic and organ functioning as well as that of the autonomic nervous system.
It has the capacity therefore to transform health and lives through its effect on mind and body, working in synergy and getting to the foundation.
Conventional medical treatment has its place, however room should be permitted for other therapeutic options.
But cannabis has been demonised for decades.
When one looks at recreational misuse and the negative impact on mental health from uncontrolled elevated doses of THC in people who may be predisposed to psychosis, the concern is understandable.
Moreover lives can be impacted through uncertified products, resulting in physical and mental health detriment as well as possible criminal proceedings.
However, to box everything negatively to the expense of removing potential life- saving treatment options (and I don’t use these words lightly) for children and adults, is negligent and unethical in my opinion.
It’s the data that speaks
Building the evidence base is crucial and we must be able to progress quickly from only a handful of patients being able to access prescriptions on the NHS.
Project Twenty21 and the fantastic work being done will shed further light. As practitioners, we’re only too aware of the incredible benefits medical cannabis accords. However, ultimately it is data that speaks.
Mental health problems, neurological conditions, pain, cancer, gut disorders and the list continues. We are only just scratching the surface in relation to chemovar knowledge and the myriad of benefits that medical cannabis has on mind and body.
As we gain further information on cannabinoids, our knowledge of terpenes and effects of flavonoids will also increase. And what an exciting time it is.
Having prescribed medical cannabis for around 18 months now, I have seen first hand the incredible impact it has on mental and physical health, quality of life and the impact of lives around those who are being treated.
Speaking with patients, it is a privilege to learn from their experience for they often have a greater knowledge and understanding on what works for them and the reasons for this. It is truly a symbiotic relationship.
I leave with you a quote from Paracelsus (1493-1541), one of the first scientists who pioneered the use of minerals and other chemicals in medicine.
“The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”
Find out more about joining the MCCS here
If you’d like to share your experience as a medical cannabis prescriber or patient, we’d love to hear from you. Please email firstname.lastname@example.org
How medical cannabis could enhance end-of-life care
Cannabis medicines are a new and preferable avenue to explore in end-of-life and palliative care.
Cannabis medicines are a new and preferable avenue to explore in end-of-life and palliative care, says Dr Anthony Ordman, hon. clinical director of Integro Medical Clinics.
When a patient is diagnosed with a life-limiting condition and transitions into end of life care, this must be one of the hardest experiences that anyone has to deal with.
When there is little more that can be done for these patients, palliative pain management is an area in which traditional medicines can be ineffective in fully combatting the pain a patient feels and can lead to them suffering from debilitating side effects such as ‘brain fog’, nausea and extreme exhaustion. These side effects often leave patients unable to communicate fully with their loved ones, in their last precious time together.
Here, one of the UK’s leading pain specialists, Dr Anthony Ordman, shares his experiences of using cannabis based medicines (CMBP’s), with his end-of-life care patients.
Living with a life-limiting diagnosis must be one of the most difficult experiences that anyone has to go through. So many doors must seem to close when a doctor tells you that there is little more that can be done to your life-limiting condition.
And for those who care for patients in such situations, or live alongside them, feeling helpless in being able to alleviate their pain and suffering, must also be difficult to bear.
So often, the response has been to treat the patient’s physical pain, with increasing doses of medications such as opioids, perhaps with antidepressants, or sleeping medicines, alongside all the other medications that must also be taken, adding the side effects of these medicines to the significant side effects of their oncology medicines.
Carers will know well the impact that all these medications can have on their loved ones.
Many patients report experiencing ‘brain fog’, extreme fatigue or nausea. They will sometimes talk about how they feel unable to interact with their families in a meaningful way, or feel unable to engage with activities that bring them joy.
The goal of treatment towards the end of life must be to enable the best quality of life for the patient and their family, while promoting as much independence as possible for as long as possible. While this may be the intention, it can be a difficult thing to get right.
Over my many years working in pain medicine, mainly in a large London teaching hospital, I’ve worked with, and alongside, some of the very best palliative care services in the country.
These were services which brought a deep understanding of what the person and their family were going through towards the end of life.
They used these understandings and all the available medicines, in the most skilful ways. But still, these services have been to a considerable extent reliant on conventional medicines, including the opioids, and still the last days could pass in a haze of sedation and sleep, isolating the person from their loved ones.
Other palliative care services up and down the country may rely more heavily on strong painkillers, which can take away aspects of a person’s personality and energy, making emotional closeness more difficult at this important time, and making meaningful and loving goodbyes more difficult for all.
The endocannabinoid system and cannabis medicines
Over the years, aware of the limitations of many of the pain medicines that have been available to us, I have always been keen to find innovative treatments for patients.
I always attended medical scientific lectures on the endocannabinoid System (ECS) found in all animals, with great interest.
This naturally occurring system, which is part of all our nervous and other body systems, uses natural chemical messengers that are similar to the cannabinoids found in cannabis plants to regulate homeostasis, or ‘balance’, within the body.
When it’s working well, the ECS can regulate and normalise such bodily functions as sensation, pain and anxiety and sleep. It may also reduce inflammation. Knowledge of this system always promised great things for pain management, except for one thing; cannabis medicines were not legal.
In November 2018, the UK regulations were changed, making cannabis medicines legal on prescription by a specialist.
For those patients who had been advocating for this change for many years, this was a significant moment. But it was a quiet change, and most patients and doctors alike were unaware that this had even happened. The NHS was not able to respond in any noticeable way to the new regulations.
Over the last year, in my private clinic, along with a few chosen colleagues, I have been using cannabis medicines to help people with long-term pain, including some with life-limiting conditions.
I’ve been surprised and impressed by how cannabis medicines can reduce pain and morphine requirements, and can lift mood and anxiety, and improve sleep, without ever making someone high, or even overly sleepy during the day. Even constipation has been improved.
People at the end of their lives have felt that their days have been enhanced, making the very best of the days left, allowing enjoyable activities, closeness and then meaningful farewells to happen.
My colleagues and I are keen to meet other people and their relatives, who find themselves faced with a life limiting illness, and who wish to discuss and find out about what cannabis medicines could do to help them to enhance the quality of life that remains to them.
If you think this might be for you, please do contact me, and I would be pleased to arrange an appointment, perhaps by video link, and discuss matters with you.
Integro Medical Clinics Ltd always recommend remaining under the care and treatment of your GP and specialist for your condition while using cannabis-based medicines. The Integro clinical team would always prefer to work in collaboration with them.
Cannabis substitution reduces opioid use in patients with chronic pain
The increasing acceptance of cannabis as a safe, alternative medication may be driving people toward opioid alternatives
Pain researcher, Dr Kevin Boehnke, PhD of the University of Michigan Medical School, discusses findings from his latest study; Pills to Pot: Observational Analyses of Cannabis Substitution Among Medical Cannabis Users With Chronic Pain.
In a large nationwide survey study (N=1321), my colleagues and I found that individuals using cannabis for chronic pain management reported reductions in the use of opioids and other pain medications.
In our retrospective study, 53 percent (n=691) of participants substituted cannabis for opioids and 22 percent (n=287) for benzodiazepines, with more than 65 percent of substitutors reporting discontinued use of these medications due to better symptom management and fewer side effects.
These results corroborate our 2016 pilot study (N=185), which showed a 64 percent decrease in opioid consumption among patients using medical cannabis for chronic pain management.
The rationale and effect size are consistent with studies conducted in Canada that similarly gauge substituting cannabis for other medications.
Our study population was 59 percent female with a mean age of 49.8 years (SD±13.8), reflecting the population demographic in which chronic pain is common – older adults and women.
Cannabis as an opioid alternative
The poor performance of many pain medications, including high numbers needed to treat (NNT) and challenging side-effect profiles, have many looking for alternatives that have greater analgesic efficacy.
Additionally, the ongoing opioid crisis has made it more difficult to obtain opioid prescriptions, and the increasing social acceptance of cannabis as a safe, alternative medication may be driving people toward opioid alternatives.
Although our data are observational and retrospective, the pat tern emerging from these and numerous similar studies makes it clear that some individuals derive benefit from cannabis-based medicines—enough so that they discontinue traditional pain medications.
Strategies for effectively substituting cannabis for opioids
Despite this pattern, however, we must proceed cautiously, as other studies report that cannabis use is associated with worse clinical pain symptoms and prescription medication misuse.
Although some may frame these incongruent findings as conflicting, we believe that they instead suggest that there are subsets of individuals for whom cannabis is unhelpful (or even harmful), and others for whom substitution is possible and clinically useful. Thus, the pressing questions moving forward are how and in which clinical populations this substitution can be done most effectively.
Although we did not examine whether participants modified their medication regimen under the guidance of medical professionals, some recent studies provide intriguing hints of how clinicians might help patients effectively substitute cannabis for opioids.
For example, Sagy et al. reported that patients with fibromyalgia (N=367) were guided by a certified nurse through a slow, methodical titration regimen of delta 9-tetrahydrocannabinol (THC) oil and/or cannabis flower.
After six months, participants reported significant improvements in pain and quality of life, as well as decreased opioid and benzodiazepine use.
Similar effects were found in a study examining patients with chronic pain (N=600; unspecified conditions) who were under going an opioid taper.
Participants were given access to sublingual, oral, and/or vaporised cannabis products with appropriate education on dose titration, as well as online psychological sup port tools. Eighty-one percent of participants discontinued or reduced their opioid dose and all but one participant reported satisfaction with sleep, pain control, and quality of life.
Additionally, two recent clinical trials shed light on important mechanisms by which Cannabidiol (CBD) and THC may alleviate opioid withdrawal or reduce opioid consumption.
In the first study, Hurd et al. showed that CBD reduced cue-related anxiety and craving among individuals in recovery from heroin use disorder, suggesting that CBD may assist in quelling symptoms related to opioid addiction or dependence (and perhaps other substance use disorders as well).
In the second study, Cooper et al. found that smoked THC dominant cannabis combined with sub threshold doses of oxycodone provided similar pain relief as a higher dose of oxycodone, providing plausibility that individuals could reduce opioid consumption by adding cannabis into their treatment regimen.
Taken together with the observational studies mentioned above, these findings highlight several important factors for substituting effectively: flexible dosing regimens (both in terms of cannabinoids and administration routes), educational supports for both cannabis titration and pain-related symptoms, and psychological services.
Tips for providing clinician oversight in cannabis treatment
Although federal restrictions present challenging barriers to con ducting rigorous cannabis studies (especially randomised clinical trials), cannabis is becoming increasingly available. States have continued to pass both medical and adult-use cannabis legislation, and hemp-derived CBD products are available in nearly all states.
In this context, patients can and will use cannabis for symptom management. Despite the lack of strong clinical trials that give explicit dosing guidance, clinicians can still provide sound clinical oversight by:
- Developing treatment plans that take into account patient expectations/goals (eg, substitution) and that include symptom tracking;
- Employing harm-reduction strategies (eg, avoid smoking, “start low, go slow”); and
- Ensuring patients know the limits of both the evidence and the regulatory system in place — especially for CBD products, which often are inaccurately labeled and do not undergo stringent safety testing.
In so doing, clinicians can embody the practice of evidence based medicine by synergising the best available scientific evidence with compassionate clinical expertise that accounts for the preferences and rights of patients with whom they are making clinical decisions.
This is not yielding to a health fad, but taking a step toward demystifying cannabis so it can be judiciously used as medicine.
Kevin Boehnke, PhD, is a research investigator in the Department of Anesthesiology and the Chronic Pain and Fatigue Research Center, University of Michigan Medical School, Ann Arbor, Michigan.
This article was originally published in the American Journal of Endocannabinoid Medicine (AJEM). Find the original article including reference list here
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