On the campaign trail

“It’s all about cannabis, and, of course, cannabis is respectable now,” says veteran campaigner Peter Reynolds, founder of CLEAR, the UK’s largest membership-based cannabis policy group.

An advocate of medical cannabis for over 40 years Peter says he noticed a change in public perceptions around 2012 with the development of the legal CBD (cannabidiol) market.

“People who never considered using cannabis to boost their health starting using CBD and found that it worked for them – and it became even more widely available,” he says.

Peter also believes there has been a change of attitude in the media, with a move away from the “reefer madness” rhetoric and an increasing awareness of the need for drugs reform.

Five years ago CLEAR flew an epileptic youngster and their family into a UK airport with their medical cannabis, only to see the medication seized by the authorities.

He says: “The media wasn’t ready to tell the story then. Back then, it was still a narrative of cannabis turns teenagers into psychotic, crazed axe-murderers!”

The United Patients Alliance was formed five years ago and co-founder Jon Liebling is now one of the country’s leading advocates for medical cannabis. It campaigns to ensure that patients can ‘access a safe and regulated supply of their chosen medicine, including the ability for doctors to legally recommend cannabis to their patients where appropriate’.

Families4Access (F4A) was established last year, and now represents some 100 families looking for help accessing medical cannabis. Co-founder Basia Zieniewicz says F4A gives patients an opportunity to have their voices heard.

The End Our Pain campaign is directed by Peter Carroll, a veteran of a number of high profile, public campaigns that have successfully changed Government policy.

One of these; The Gurkha Justice Campaign in 2008 in conjunction with Joanna Lumley persuaded the Government to allow Gurkha veterans to settle in the UK.

United Patients Alliance (UPA)

Jon Liebling first started using cannabis as a student, preferring it to alcohol. He says it helped him deal with stress issues, back pain, anxiety and depression. Over time Jon, who has forged successful careers as first a psychiatric nurse and later a tech expert, developed a deep understanding of the plant; a knowledge and passion he is always keen to share with others.

He says the only problems he has ever experienced have been related to its legal status. In February 2016 he received a 12 month sentence for Production of a Controlled Class B Drug, suspended for two years.

He was arrested following a police raid and the seizure of four plants, under cultivation in his home for personal medical use. “I tried to mention my health condition whilst being pinned to the floor and handcuffed, but of course this was totally ignored and my ‘anxiety’ was cruelly mocked.”

He remains defiant: “As far as I am concerned, it is and has always been an unjust law, and I no longer wish to apologise for doing something that improves both my mental and physical well being and does no harm to me or anyone else.

“I prioritise my health and well being as more important than an unjust law against growing and ingesting a natural and medicinal plant,” he says.

This conviction galvanised Jon’s efforts to see cannabis available via prescription and led to his work with the United Patients Alliance. Formed with the help of Caroline Lucas MP and Professor David Nutt, the UPA initially consisted a handful of patients who felt there was no organisation in the UK ‘focussing entirely on the patient, rather than the plant’.

Jon attended its first meeting in London in July 2014 and charged with zeal he is now the political director – ‘effectively working full-time on a voluntary basis’. He says: “The UPA have moved from being frontline grassroots activists to time-served, experienced, professional campaigners and lobbyists. “By engaging properly and respectfully with the authorities, police and parliamentarians we have gained the trust of all of them.”

It now works closely with the Multiple Sclerosis Society, the All Party Parliamentary Group for Drug Policy Reform, The MHRA (Medicines and Healthcare products Regulatory Agency), NICE and the NHS.

As well as hoping to see cannabis rescheduled as a Schedule 4 drug, the UPA aims to make ‘cannabis legally accessible to all patients who wish to consume it for therapeutic reasons’.

The UPA’s associate director Carly Burton, 32, a university lecturer, suffering with fibromyalgia, became the first UK patient to be prescribed medicinal cannabis by private pain specialist Dr David McDowell. Jon says this is one of the UPA’s highlights, but says there have been many ups and down over the last four years.

“The lows come as each two steps of progress we make, there is always a step to take back. The highs come from new patients experiencing the benefit of cannabis and from every patient who tells us that we have helped empower them.”

Families4Access

Basia Zieniewicz is a co-founder of Families4Access (F4A), a campaign directed by Steve Moore, the former chief executive of David Cameron’s Big Society Network.

Less than one-year-old, F4A now advocates for over 100 families seeking CBMP’s for their children’s conditions. During this time, F4A has become a registered stakeholder with the National Institute for Clinical Excellence (NICE), partaking in the drafting of new Government guidelines for CBMP’s which will be unveiled this October.

Canadian by birth, Basia was living in California when cannabis was legalised for recreational use in 2016. Taking a long term sabbatical from her profession as an arts and SEN teacher, Basia had been ‘allowing her investigative curiosity’ to find a suitable way to inform her own ‘political artistic’ take on the world, she says.

Basia Zieniewicz

“Growing up in Canada, where medicinal cannabis use was always a non-issue, I couldn’t help but wonder what the fuss was about in California over the law change.

“In Canada, it is common place for people to use cannabis to alleviate suffering.”

Fascinated, and immersing herself in this Californian cannabis culture, Basia spent time attending medical cannabis conferences, researching the science and history of the plant and interviewing academics, patients and entrepreneurs. This resulted in a 180 degree turn in her own perspective. A personal experiment involving the creation of a cannabis infused balm for a ‘very conservative’ relative, suffering acute pain, confirmed this ubiquitous, positive narrative for Basia.

Returning to London in the summer of 2017 – where she’d previously lived for 12 years – she found her network of progressive health buff friends ‘had no clue about CBD’, but on her return in early 2018 she says ‘everyone was raving about it, whilst neglecting the other cannabinoids’.

Combining her teaching background with an interest in cultural shift and social justice, Basia made her experience known to Volteface, a Think Tank focusing on drug policy, and was promptly invited by Steve Moore to set up F4A.

“I wondered, how can cannabis be prohibited when it has been repeatedly demonstrated to transform people’s health and lives for the better? As a teacher, I naturally conclude that the answer is in education. So I went searching to find the people who were moving and shaking things.

“It doesn’t stop at CBD. There is a need to educate people and create the space for a more intelligent, and informed public debate.

“We currently find ourselves in a situation where parents aren’t able to access a range of potentially effective variations of CBMP’s. There is no one-size-fits-all type. You need to be able to cater to an individual’s endocannabinoid system.

“Some families feel option-less and exhort to leaving the country to bring medicine back quietly. My aim is to help make that change.

“To me it is unethical [that] a medicine, which is keeping a child alive, is deemed a prohibited substance!”

Basia says F4A gives parents an opportunity to have their voices heard. Its work involves collating data from families on their experiences, their ongoing dialogues with their medical consultants, and using this to inform its strategies when engaging with policy makers.

“Many families whom we support won’t engage on social media, as they do no want to draw attention to themselves for fear of being penalised by social services.

“For some, even a very limited show of support evokes a fear they will be accused of being neglectful parents. But, they are merely desperate for something that improves the lives of their loved ones, and in many cases, a chance to live.

“Hearing the profound testimonials on how it has helped so many people is something I just could not turn away from. We’ll get there, I have faith,” she adds.

*Since our interviews with Jon and Basia they have announced plans to join forces to create Cannabis Patient Advocacy and Support Services.

This not-for-profit service aims to support patients, parents and carers whilst ‘promoting safe, effective, affordable and equitable access to medicinal cannabis for all who can benefit’. It will be officially launched in the coming months. See www.cannpass.org and follow on Twitter @cannpass.

CLEAR

Peter Reynolds (pictured left) went on his first legalise cannabis march in the 1970s and gave evidenceto Parliament in the benefits of medical cannabis in 1983.

He has fought for parliamentary seats in General Election on the legalisation of cannabis platform and this activism culminated the formation of CLEAR – Cannabis Law Reform in 2011.

Peter Reynolds

It now has approaching 250,000 followers on social media and 3,000 paying members.Peter and a committee of five people, who all work voluntarily from their own homes, have assisted over 500 people since its creation and at any one time is working with over 20 people seeking access to CBMP.

He says: “In my experience cannabis is not particularly powerful as an analgesic but what it does do, is alter the perception of pain – for some it can go the other way – but for most it makes the pain easier to cope with.

“For a lot of people who are in constant, chronic, severe pain, conventional opioids, and the amount they have to take turns them into a vegetable; they end up just lying on the sofa, detached from their family and not relating to their kids.

“But where cannabis is used, it takes the pain away and allows them to continue to function and be much more productive.” Peter says that the emergence of the legal CBD market has allowed the debate on medical cannabis to gain traction in Parliament.

He added: “I have worked voluntarily in the cannabis industry years, but now also works as a consultant for a couple of Canadian producers looking to get licences the UK.

“The knowledge and experience I have built up over the last 10 years means that I am now beginning to see the benefit in terms of this consultancy work. I have the knowledge that people want.”

Peter’s cannabis advocacy came before the discovery of the human endocannabinoid system, over 20 years ago. Endocannabinoids are the chemical messengers that help maintain optimal balance in the body, and when disrupted, can contribute to a wide variety of conditions, including fibromyalgia and irritable bowel syndrome.

This discovery of this endocannabinoid system, primarily in the brain and central nervous system, is viewed by many as evidence that we are built to have a natural relationship with the cannabis plant, which has been used by mankind in one form or another for over 10,000 years.

Peter added: “It’s just remarkable that the things a lot of people were saying about the benefits of cannabis, before the discovery of the endocannabinoid system, now have the rationale to support them.”

End Our Pain

“The dam has been breached,” says Peter Carroll, campaign director of End Our Pain.

“Certain patients have been given licences to use medical cannabis and the government has changed position fundamentally away from its constant mantra of the last decade that ‘cannabis has no medical benefit’.”

End Our Pain was instrumental in pressurising the government into rethinking its stance on cannabis. The hard work of this and other medical cannabis campaign groups culminated in the government’s decision last November to reclassify cannabis. The decision means that some cannabis-based medicines can now be prescribed in limited situations. While the news was hugely encouraging to many people keen to benefit from cannabis medicine, however, Peter (pictured above) feared at the time that the battle was far from won.

Peter Carroll

And his concerns were well placed given that, although medical cannabis is now legal, the vast majority of patients wishing to take it to alleviate pain cannot.

“The government has set a very tight definition of what counts as medical cannabis, who can prescribe it and in what circumstances. This is different from what we have been campaigning for. We are campaigning for the whole plant oil, as long as it is extracted, manufactured and produced through a standard at least equivalent to good manufacturing practice, to be generally available under prescription from GPs for a significant number of conditions.

That is the case in other countries like Holland. If the government says you can’t take the whole oil out of the plant, which has mix of CBD and THC – and use that without trials lasting three to five years with big pharma behind them – then medicine that has helped people like Alfie Dingley might not be allowed in Britain, which is crazy.”

Since the reclassification, many patients who may have travelled abroad for treatment, or self-medicated illegally, have been frustrated by the ongoing lack of access to cannabis medicine in the UK. Chair of the APPG on Medical Cannabis Under Prescription, Sir Mike Penning MP, recently described the application process as “extremely daunting”.

He added that: “The implication that any prescribing clinician will be taking on personal liabilities will deter many doctors from agreeing to take part even if they believe it to be clinically justified.”

Other hindrances include the fact that patients must have exhausted all other products before receiving access to medical cannabis, which could delay receiving a medication that works for many months. There is also a requirement that if the medicine has not been tried, by travelling abroad, then it must have been through a clinical trial – which, being illegal, most cannabis medicines have not.

Peter says: “Clearly the campaign is far from done. It’s vital now that we work to keep the pressure on the Home Office, Department for Health, the Chief Medical Officer (CMO) and all the politicians in parliament interested in this, to make sure we come out with a solution which benefits a significant number of patients. It’s a massive job and a massive cultural change.

“Initially, we saw numerous instances where local health teams were reluctant to apply to the medical panel that the government had set up as an interim measure for people in real distress who wanted medical cannabis. The grounds they cited for their reluctance was that they didn’t understand what it was and the hospitals had no policies in place.

“There is a general concern that medical professionals won’t prescribe something that they don’t understand.

“It’s inevitable that we will have to train a very large number of people, including GPs, consultants and possibly nurses, to understand what medical cannabis is, what it is capable of and how it should be prescribed.”The momentum built up in recent years by medical cannabis campaigners, and the progress they have made to date, suggest current issues can be overcome with a concerted, coordinated effort.

Just a few years ago, Peter says, most people in the UK had zero understanding of medicinal cannabis. The pace of change has been remarkable since.

“Cannabis was only seen as being about smoking joints. So when you said ‘this could have medical benefits for children with epilepsy’ for instance, in their minds, people would make this false link between somebody smoking a joint and someone trying to cure a child.

“Over the last couple of years, the penny has finally dropped in the public’s mind that medical cannabis is a medicine, it’s not a recreational drug. They are two different things. Establishing that understanding has not been a trivial thing to do.

”Bringing about this change owed much to Peter’s experience in both government and campaigning generally. He is widely credited as the architect of Joanna Lumley’s Gurkha Justice Campaign and was also one of the founders of the UK’s most successful fuel taxation campaign.”

He has successfully run a series of other political, charity and community campaigns and co-founded public affairs firm Tendo Consulting with colleague Will de Peyer in 2015.

His and Will’s time as special advisors to the coalition government proved particularly helpful in shaping End Our Pain’s lobbying of MPs.

“When we were in government we were lobbied by lots of people, some very well, some very poorly,” Peter says.

“One of the great fascinations about campaigning is that the world is always full of many thousands of issues and policy calls which are all very important and really affect people. Taking one of them and making the government react to it is quite an art. One option is to build awareness of an issue over many years and produce a load of papers and case studies on it and approach think tanks to discuss it. If you are very lucky, a political party might take it up as a policy idea for a manifesto, but the odds of that are really quite small.

“The other option is that you take an issue and you get it to such a high profile politically that even though the government probably doesn’t want to address it, they have to because of the full weight of public opinion is so great that the government has to listen. The Gurkha campaign is an example of that.

“Gurkhas served in the British army for over 200 years and for decades people said they were treated unfairly when they retired from the army, being unable to live in Britain and having to go back to Nepal.

“In the end we forced though a change. It was the first time in 30 years that a government lost the vote on the House of Commons floor on an issue like this. This is effectively what we’ve helped to do with medical cannabis. We’ve pushed the issue so hard that it’s got through all the other very genuine issues that perhaps politicians should be looking at and we’ve got it on the political radar.”

At the time of writing, 83 MPs are now backing the End Our Pain campaign, as well as 14 peers and several high-profile figures including Russell Brand, Sir Richard Branson and Sir Patrick Stewart. The campaign, says Peter, won’t stop until the terrible suffering of patients who can’t get access to medicinal cannabis in the UK is adequately addressed.

www.endourpain.org