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“Three years on, disabled people need a solution”

PLEA’s advocacy director highlights how disabled patients are still suffering three years since the law change.

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medical cannabis patients
Sajid Javid was Home Secretary when medical cannabis was legalised in 2018

Almost three years since the rescheduling of medical cannabis, disabled patients are still suffering, writes Lucy Stafford, advocacy director at PLEA (Patient-Led Engagement for Access).

In November 2018, current Health Secretary (and then Home Secretary) Sajid Javid ruled that medical cannabis would be made legally available for patients with chronic conditions.

At the time, he claimed the government had “now delivered on our promises.”

Today, the UK is the world’s leading producer of medical cannabis products, yet the overwhelming majority of eligible UK patients are still unable to access legal NHS prescriptions that could vastly improve their quality of life.

Instead, people suffering from chronic pain, Tourette’s disorder and other conditions have found themselves shackled with serious debt or even risking arrest as they attempt to seek treatment. Some patients report having to sell all possessions and even homes to fund private prescriptions.

Lucy Stafford medical cannabis patient

Lucy Stafford

A new report published in the British Medical Journal (BMJ) identifies barriers to access for patients with Ehlers Danlos syndrome, as well as solutions to breaking the deadlock for patients with numerous conditions.

Javid returned as Health Secretary earlier this year. Patients and patient groups now demand that he revisit his decision on medical cannabis, and quickly address all obstacles, allowing meaningful access for the people who need it.

Disabled patients across the United Kingdom are demanding that Health Secretary Sajid Javid fully delivers on the government’s 2018 promises and makes legal medical cannabis accessible to patients with chronic and life-limiting conditions. Then Home Secretary, Javid’s November 2018 decision permitted legal prescriptions of the drug. And in these three years, the United Kingdom has emerged as the largest producer of medical cannabis, identified as such in research conducted by the United Nations.

But very little has changed for the majority of patients with chronic and life-limiting conditions. Many barriers to NHS access remain. And in fact, only three patients have been able to access ‘full spectrum’ (or ‘full plant’) medical cannabis via the NHS, since the medicine was made legal.

Kayleigh Ross, a patient working group member at PLEA, said: “The government has not ‘delivered on its promises’ as Javid stated. In 2021, this important treatment remains inaccessible to hundreds, if not thousands of people whose lives could be transformed but are instead encountering huge problems as they try and afford private prescriptions. Enough waiting. We need more than just words, we need things to change.”

BMJ Report identifies barriers to access – as well as solutions

On the 9 September 2021, the BMJ published clinical practice guidance for the provision of non-inhaled medical cannabis for patients living with moderate to chronic pain, including people with neuropathic and cancer-related pain.

This follows the publication by the BMJ in July of a new case report, highlighting the barriers which still remain for patients with chronic and life-limiting disorders, including a lack of physician knowledge on the topic and education on medical cannabis use, restrictive guidelines and cost and supply issues.

Specifically relating to Ehlers Danlos syndrome – an inherited disorder that affects the body’s tissues – the report identifies ways of breaking the deadlock for patients, with solutions that include increasing UK production of medication and bulk importation of medical cannabis from around the world.

As highlighted in the BMJ’s case report, a lack of NHS access means that UK patients using legal medical cannabis are often having to pay for expensive private prescriptions. And those that can do this will often have to borrow from friends and family, sell possessions or go into long-term debt, in order to fund their treatment.

Lara Bloom, president and CEO at The Ehlers-Danlos Society said: “We hope that this report will support clinical expertise of this treatment option and expand research into this area. It’s unacceptable that patients are forced to resort to illegal routes of access when they cannot afford private healthcare – patients need NHS access to treatment, including cannabis-based medicinal products where appropriate.”

Patients are receiving life-changing treatment, but at what cost?

Jim Finch and his wife are having to sell their family home in order to pay for an ongoing prescription that has cost upwards of thousands of pounds for just ten days worth of treatment.

Jim Finch

Jim Finch developed Tourette’s after a serious car accident

A 2018 car accident that was no fault of his own resulted in serious injuries and trauma and left Jim with complex neurological conditions including Tourette’s Syndrome, fibromyalgia and functional neurological disorder. He went from a healthy, 29-year-old dad to being unable to walk or communicate properly and suffering dozens of fits and seizures a day.

Jim was prescribed ‘hundreds of pills’ to manage his symptoms including Tramadol, Morphine, Diazepam, Codeine, amitriptyline, Lorazepam and Sertraline, which left him (in his own words) a ‘vegetable’. Now, he uses a vape of privately prescribed medical cannabis to help control his pain, tics and seizures.

Jim said: “It has changed me from bed-bound to housebound and I can now be a proper father to my young children. Before, that simply would not have been possible. I’m as close to my old self as I have been since before the crash. There’s the injustice that people are going to prison for trying to get help for themselves.

“There’s also an injustice that people have to pay so much for private prescriptions. My partner and I sold both our cars, used all our savings and have borrowed thousands from family in the past two years. We are now having to sell my house and move in with my in-laws, along with our children to be able to continue this life-changing treatment. And all of it just so I can be present as a father.’’

Building the UK evidence base

In November 2019, the UK scientific charity Drug Science launched Project Twenty 21 – an observational study of 1,500 patients to date, which aims to create the largest body of evidence for the efficacy of medical cannabis in the UK.

The study covers a range of primary conditions, the most common being anxiety and chronic pain, and has the ultimate aim of providing enough evidence to bring about better patient access for medical cannabis on the NHS. With the help of funding from industry producers, Project Twenty21 provides patients with medical cannabis products at a capped price, whilst collecting patient data to feed the UK evidence base with the goal of influencing the NICE guidelines.

Having spent my teenage years in severe pain, dependent on opiates and a feeding tube, my quality of life has been ‘transformed’ by medical cannabis.

Now aged 21, I am one of the few patients able to legally access medical cannabis in the UK. I do this through Project Twenty 21, which provides me with a subsidised private prescription that costs £450 a month, previously having paid £1,450 each month.

Three years ago my life was a blur of excruciating pain from dislocating joints at the smallest of movements, needing support from full-time carers to even use a bedpan as I couldn’t get out of bed safely. I had countless injections of incredibly powerful opioid drugs to try and reduce my pain. They never worked and as I became weaker, the pain medications became stronger. I felt like a shell and had no hope or idea how I could keep living in that state – that’s what constant severe pain does to you.

Three years ago Sajid Javid saw the suffering of disabled people and the benefits that medicinal cannabis could bring. Thankfully, he changed the law to allow legal prescriptions. My doctor and I were thrilled. This was my last hope for a life-changing treatment, after which I would be referred to palliative care. But when my doctor wrote me such a prescription, it was denied funding and I was told I could not access the treatment on the NHS. I was devastated.

So like millions of other unwell people, I had no option but to break the law to find help. I was scammed, sent contaminated cannabis, left in vulnerable situations during drug deals and I was terrified of being caught. This was one of the lowest points of my life.

Today, as I am fortunate enough to be supported by my family to have a legal prescription, my health has never been better or more stable. I can now walk, sit, live independently, focus, study for a degree and live a generally normal life, away from hospitals and endless medical interventions. But funding life-saving medication is unsustainable as a disabled student on a very limited income, even at the heavily subsidised rate I receive as a patient with Project Twenty21. And I live in fear of losing access and getting sick again.

The current situation helps no one. Established medications, such as those that I was given, cost the NHS a great deal and can come with terrible side effects. The toll on the mental health of ineffectively treated chronic conditions, like my own, can make patients feel suicidal. And private prescriptions are expensive so people either can’t afford them or can be forced to choose between being in pain and being able to eat.

That’s barbaric, and something the NHS was created to prevent.

For more information visit PLEA (Patient-Led Engagement for Access)

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Fibromyalgia diaries: Travelling as a medical cannabis patient

Medical cannabis patient, Julia Davenport, on the challenges of travelling with a prescription.

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South Africa remains one of fibromyalgia patient Julia Davenport's favourite places - but getting there isn't always easy.

While cannabis oil has dramatically improved fibromyalgia patient Julia Davenport’s quality of life, it has brought with it new challenges when it comes to travel, as she explains here.

Chronic pain has a nasty habit of getting in the way of doing the things you love.

My big passion which I share with my husband, and I guess our one extravagance, is jetting off to far flung places.

Over the years, however, fibromyalgia, arthritis and aching joints have conspired to make travelling evermore arduous.

Now in my 70s with various replacement parts, difficult terrain is one of the biggest barriers to exploring new places.

Certainly, my husband’s bucket list destination, the Galapagos Islands, is on my no-fly list. I would have adored to go there at some point, but navigating those volcanic rocks, even with my walking stick, would be a nightmare.

Fibromyalgia: A banner advert for the medical cannabis clinic

Familiar holiday spots closer to home are also becoming increasingly inaccessible. Every year our extended family visits the same Northumberland cottage, which is at the bottom of a steep bank.

In years gone by, I’d be fine to walk down to it through the working farm in which it stands. Now, because my back and shoulders have deteriorated, I have to drive right to the door.

Finding ways to compensate for the things you can no longer do is a constant theme with chronic pain conditions.

Aside from mobility challenges, another restriction on travel with rheumatological conditions can be the weather, and humidity can play havoc with chronic pain. I’d love to go to Central America, for example, but I just couldn’t tolerate the heat and humidity.

Having said that, although hot dry weather is far better than the cold British winter, the difference is not enough to drag me away from my family at Christmas time.

For all my gripes about life on the road, though, traveling remains my great joy, and discovering medical cannabis and CBD has definitely helped; although it’s not all plain sailing.

Travelling with medical cannabis

In November I’m returning to South Africa, a place I’ve visited a few times and which has a special place in my heart.

On previous visits, because we’ve flown via Dubai, I’ve not taken medical cannabis or CBD with me.

There is no way I’d risk taking cannabis with me to the UAE, where people have apparently been arrested and put in jail for having codeine, never mind anything else, despite having a prescription for it.

They have a ridiculously long list of substances that they deem addictive which you can’t have. There are things you can apply for permission to take, but I just wouldn’t trust that I wasn’t going to get arrested.

When we’ve flown long-haul through Dubai in the past, I would tend to take enough medication just for the journey. I have even flushed pain medication down the toilet on a connecting flight to Dubai just to make sure I’m not in possession on arrival.

I’ve then managed to pick up cannabis products quite easily in certain final destinations.

In South Africa there was a shop similar to a Holland and Barrett which sold CBD products legally. They were able to match the equivalent of what I was already taking to their products.

In Japan, it was also relatively easy to buy CBD over the counter, even with the language barrier.

In the past, the ease at which you can buy CBD has definitely influenced my travel choices. There are lots of countries that I’d give a wide berth to because of their approach to medication, which is often underpinned by false views on addiction.

At the same time, with so many countries opening up to CBD, travelling is getting easier and the main challenge is the routing of flights through the Gulf.

Thankfully on my next trip to South Africa we are travelling direct to Cape Town directly so I can rest easy that I won’t end up behind bars.

Guidance for travelling with medical cannabis

Some countries allow medicinal cannabis and some even recreational cannabis. Some allow CBD but others do not.

Guidance from the Medical Cannabis Clinicians Society recommends that patients always contact the embassy to check the legal situation in the country they are visiting before travelling with medical cannabis.

 Some countries require a letter of proof from a clinician, some require a request to be submitted to the embassy requesting to travel, some restrict the amount of medication you are able to travel with, i.e. up to 30 days supply. It is suggested that any guidance is sought and confirmed in writing.

It is advised that travellers keep medication on their person, stored in its original packaging along with a copy of their issued prescription and relevant corresponding paperwork. 

You can get an idea of the country’s stance on cannabis initially by searching for “legality of cannabis” on Wikipedia – but always check with the embassy as well.

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Fibromyalgia diaries: To vape or not to vape?

Medical cannabis oil has been life-changing for Julia, but she’s still struggling to come to terms with vaping.

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Fibromyalgia diaries: To vape or not to vape?

Fibromyalgia patient Julia Davenport says cannabis oil has been life-changing for her, but she’s still struggling to get on board with flower.

My perception of cannabis has changed dramatically in the few years since I started taking it as pain relief. 

As I mentioned in my last entry, I’m from a generation which, despite living through the enlightened age of the 1960s, grew up believing the plant to be bad. 

This created a strong resistance to even trying CBD or medical cannabis when they emerged as possible treatments for pain associated with my fibromyalgia and arthritis. 

I’m over that now, and take CBD daily, with a private medical cannabis prescription to use orally whenever I have a flare-up. 

Fibromyalgia: A banner advert for the medical cannabis clinic

Read more about how Julia discovered medical cannabis

One taboo I’m still struggling to get past, however, is the use of vape. 

Buried in my kitchen drawer is a dry herb vapouriser, alongside the medical cannabis flower prescribed to me by a pain consultant.

With this, I’m armed and ready with what I understand to be the fastest route for medical cannabis to get into the bloodstream.  

But, sadly, although it could have rescued me on several occasions in the year since I bought the device, its box remains sealed.

I’m sure many Cannabis Health readers will be shaking their heads right now. What a travesty that something millions of people with a range of conditions could potentially benefit from is going to waste. 

I do truly feel lucky to have a private prescription at a time when countless others are unable to access medical cannabis through cost, red tape or misinformation.

The problem I have is my huge aversion to smoking. Yes vaping isn’t smoking, but the action of ingesting something that looks like smoke into your lungs just doesn’t feel right. 

While I’ve never smoked in my life, my father was a heavy smoker who suffered from the lung disease, chronic emphysema. My mother also had coronary artery disease, possibly related to smoking. 

For these reasons, I just have a mental block about vaping, despite reading about how effective it can be as a breakthrough remedy.

No doubt many people my age, who grew up with parents who smoked, also feel the same; and perhaps there is some way to go before vape vendors can escape perceived links to smoking.  

Maybe more evidence on the impact of vaping on the lungs will help to change this over time – and I’ll eventually make use of my vapouriser. 

Meanwhile, in putting my fibromyalgia diary together, I began to think about all the ways cannabis has changed my life. I thought I’d share perhaps the most unusual one – going cold turkey on my teddy bear collection. 

With chronic pain conditions, including fibromyalgia, night time can be particularly difficult and insomnia is common. It is a horrible experience to feel utterly drained but be unable to fall asleep, sometimes for days. 

Before discovering CBD and medical cannabis I would often find myself wide awake in the middle of the night. It was at these times that my attention drifted on my iPad to eBay. 

For some reason, possibly nostalgia, my search for distraction amid the pain and boredom took me to the furry world of vintage teddy bears.

Many nights spent bidding for bears in the blue light led to a considerable collection building up. 

Now, my days as an arctophile (yes there is a word for someone who collects or is very fond of teddy bears) are over.

My CBD and medical cannabis regime has significantly cut the number of sleepless nights I experience and, in turn, the volume of new bears taking up space on my shelves.

Next time: Travelling as a medical cannabis patient.

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“As a psychiatrist I have been amazed by the power of medical cannabis”

Dr Tahzid Ahsan, a consultant psychiatrist on discovering the benefits of cannabis for mental illness.

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“As a psychiatrist I have been amazed by the power of medical cannabis”
"With one cannabis flower I have treated people with depression, anxiety, autism, ADHD, PTSD, insomnia and more."

Estimated reading time: 6 minutes

For almost 20 years I was shamefully oblivious to the truth, but now I have seen the benefits of medical cannabis in all walks of society, writes Dr Tahzid Ahsan, consultant psychiatrist and prescriber at The Medical Cannabis Clinics. 

Professor David Nutt wrote a recent article for the British Medical Journal, entitled; Why doctors have a moral imperative to prescribe medical cannabis

So when did the moral compass change around cannabis and why?

“As a psychiatrist I have been amazed by the power of medical cannabis”

Dr Tahzid Ahsan

For thousands of years cannabis has helped humankind with discomfort and diseases of the mind, body and spirit, discussed in great detail as a form of medicine in ancient Hindi, Chinese and Arabic manuscripts.  

The current stigma arises from a period of civil rights movement in the 1960s US, leading to a direct ban on all psychoactive substances during the ‘flower power ‘era. 

The US’s number one ally followed suit, with the UK enforcing the 1971 Drugs misuse act as swathes of ethnic minorities were migrating to the UK, leading many to being incarcerated for cannabis use.

In the 1980s I grew up in an inner city area of a major city, where social and economic deprivation were rife. I recall young black and ethnic minority men being incarcerated by the police due to cannabis use, some were even placed into mental health units under the premise of the 1983 Mental Health law, stating that they were psychotic due to cannabis use. 

Despite substantial evidence to suggest that migration and trauma is a factor for someone to develop schizophrenia and psychosis, the abhorrent stigma still remains that cannabis directly causes this.

As a result , rightly or wrongly, the three associations that are currently most attached to cannabis are criminality, race and socioeconomic status, preventing a nascent industry and treatment from getting the exposure that it deserves. 

For almost 20 years I was shamefully oblivious to the truth, the veil of ignorance preventing me from seeking further knowledge around a substance that had helped with mind, body and spirit for thousands of years. 

anxiety: A banner advert for the medical cannabis clinics

As a training day coordinator for my consultant training scheme in 2017, I managed to have an invitation accepted by my ‘hero’ Professor Nutt himself. Witnessed by over 150 psychiatrists, Professor Nutt reflected on the past, present and future of psychiatry, with us.  I recall the grumbling tones of protestation from the crowd when cannabis was mentioned as a potential treatment for many mental health conditions in the future. 

In 2018, the story of young Alfie whose life was transformed by medical cannabis, led to a dramatic change  to the 1971 Drugs Misuse Act, whereby cannabis for medical use was reduced in scheduling meaning it could ‘be prescribed in humans’. This small change in the law has led to a fledgling industry. 

I joined The Medical Cannabis Clinics in November 2020, the first medical cannabis clinic to form in the UK. I then became a registered doctor for Project Twenty21, set up by Professor Nutt’s organisation Drug Science. The project made medical cannabis prescriptions more affordable, as well as gathering important real world evidence for research. 

Over the past two years I can honestly say I have been truly amazed by the power of medical cannabis. 

My shock comes from how medical cannabis can traverse such a huge range of mental illnesses in such a short space of time,  with very little side effects noted. 

Patients love the fluidity and malleability of medical cannabis, they don’t feel it’s dictating their lives like traditional medications have done. Some have even described cannabis as an accompaniment to their lives like a “long lost friend”, helping them cope from moment to moment, providing them with the necessary headspace to recover, grow and learn. 

With one cannabis flower I have treated people with depression, anxiety, autism, ADHD, PTSD, insomnia and more.

I have seen the benefits in people from all walks of British society, from the 70-year-old lady in a local village to an 18-year-old male from south London. 

I have heard many stories where people were literally at the end of the tether, having gone through a multitude of medications and therapy, to finally find something that can help them feel ‘normal’ again. They can now live life to the fullest, with a new found confidence in themselves to interact with the world around them in a fruitful manner. When I hear patient’s stories of how they have reconnected with people who they had avoided for many years, it almost brings a tear to my eye. 

In my entire 20 years of being in the medical field, I have never once heard an equally glowing review about a particular psychotropic medication, in comparison to medical cannabis. 

My whole perception of medical recovery has changed. As clinicians we dictate what the patient should have, and at what time. If they don’t conform, we label them as ‘non-compliant’ (bad patients), despite the side-effects causing more issues for some than the condition itself. 

With medical cannabis, patients can choose what strain and how much percentage of THC or CBD they would like, the terpene profiles that suit their goals and needs, adjusted according to how it benefits them. For the first time in their lives patients are enjoying recovering from their mental ailments through the power of medical cannabis. 

Unfortunately most in the UK are completely oblivious to the immense benefits of cannabis as described above, still associating cannabis with criminality, race and socio-economic status. 

Due to certain elements of the Proceeds of Crime Act 2012, we have been left in a position where the UK is one of the biggest exporters, as well as the biggest importers of medical cannabis. Yet UK patients cannot benefit from locally grown medical cannabis, they can only be prescribed cannabis that has been transported across the world. This has created a bottleneck where patients have been left waiting for weeks due to stock issues. 

It’s promising to hear that MPs such as Jeff Smith, who recently motioned the Medical Cannabis Access Bill, are working to try and make quality medical products more easily accessible to patients.

In the west, research and subsequent treatment depends on the gold standard of randomised controlled trials (RCTs). If evidence of treatment has not followed these standard research protocols, the evidence is almost dismissed by clinicians. 

As you can imagine it’s easy to do research on a drug where dosages can be changed very easily in a neat incremental manner. But cannabis does not fit into the neat categories within RCTs. The effect of the flower can change according to the strain, terpene profile and cannabinoid content. It requires a different approach and respect when it comes to evidencing benefits of medical cannabis, with more emphasis on qualitative clinical case studies.

At a time of great division nationally after Brexit and ongoing worldwide geopolitical turmoil, medical cannabis could be a unifying force that allows for more compassion and understanding between all of us. 

Cannabis, like the notion of ‘faith’, knows no boundaries, colour creed, or religion. I feel truly blessed that I have come across a treatment that I believe will shape the western philosophy of medicine for the foreseeable future. 

Dr Tahzid Ahsan, is a consultant psychiatrist and prescriber at The Medical Cannabis Clinics. If you could like to share your story contact [email protected]

 

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