Living in limbo: The experiences of UK patients who are prescribed cannabis.

What happens when the medicine you take is otherwise illegal, and not many people know the law has changed to allow doctors to prescribe it for you? This is the strange (and often scary) liminal space occupied by cannabis patients across the UK. One of us (Lindsey) is a researcher and lecturer who has personal experience of this liminal space, through a family member who is treated by cannabis under the new law. The other (Helen) has been a drug policy analyst and lecturer for nineteen years. Together, we undertook research to find out what it was like for other patients to take a legally prescribed medicine in a context of prohibition. 

Real people, real lives

Stories are so important; they help us to identify with people and to understand the realities of how policy affects everyday life. Life was already difficult for the patients we spoke to – they were living with a range of conditions that affected their physical and/or mental health (including pain, intractable nausea and vomiting, epilepsy, digestive conditions, fibromyalgia, PTSD, anxiety, ADHD and insomnia). We spent time with these patients, and some people who cared for them, undertaking qualitative interviews to give them the space to talk about their experiences in this relatively new policy space.

A quiet revolution or keeping policy in the closet?

Patients have been lobbying the government for decades to ask for a change in the law to allow cannabis prescribing. A series of cases of children with severe epilepsy (Alfie Dingley and Billy Caldwell, amongst others) have received significant media attention. Standard treatments had failed to treat these children; they desperately needed cannabis medicine to stop life threatening seizures. 

The government finally responded in 2018, changing the law to allow Consultants on the Specialist Register to prescribe cannabis for the first time. However, in terms of implementing the policy in real terms, the government response has been lacklustre. Formal channels for production and supply to the UK medicinal market remain in flux, leaving pharmacies struggling to fill prescriptions and patients anxious about the health deterioration they experience without the medication. There has been no state package of education for medical professionals to teach them how to prescribe the drug or how to manage it alongside conventional medication. Nor has there been formal national training or education for police officers who need to know how to distinguish between those who can legitimately possess the drug and those who cannot. 

UK law continues to make possession of cannabis illegal without a prescription. Combined with the alarmist political and media rhetoric that surrounds cannabis, this makes it difficult for the public to then view the drug as a legitimate medicine, or people who need the medication as legitimate patients. The result is that people who are prescribed the drug are living in a kind of liminal space, between the legally prescribed medication and the law that prohibits it. Additionally, the NHS rarely prescribes cannabis, leaving patients with no alternative but to pay for private healthcare. Our research uncovered the stigmatisation and health inequalities created by this situation. 

Cannabis evangelism

Our patients overwhelmingly found cannabis beneficial, with less side-effects than other prescribed drugs, whose significant side-effects previously prevented active living. For many patients, the cannabis prescription variously allowed them to function as parents, to work, to participate in physical activity and to attend school. Many of our participants were strongly committed to educating others about cannabis as a means of combatting stigma. Patients were so excited by the change in their lives that many of them were advocates for other patients, and lobbyists and activists for equal access to cannabis medicine. Some undertook this work privately, often online to maintain anonymity, through fear of stigma. Others took action publicly, through participation in TV programmes, media campaigns and visits to parliament. They undertook this work despite either being unwell themselves, or caring for someone who was.

Legal prescription: Home and dry or lost in the fog?

Only one patient had been able to access an NHS prescription. The rest had no option but to rely on private clinics. This had significant ethical, health and social justice implications for patients, particularly those who could not afford private medicine. Patients described accruing significant debt with banks, families and friends and even re-mortgaging their homes in order to afford a medicine which had changed, and in some cases saved, their lives.  

Even when prescriptions were accessed, supply chain issues at pharmacies left patients vulnerable to lack of availability of the specific product type that suited their condition; further expense or lack of efficacy from alternative products; poor quality products; and imported products of unknown heritage/safety. 

The lack of professional training meant cannabis patients experienced a range of health and legal inequalities and stigmatisation: Doctors and specialists in the NHS ranged from interested but untrained, through to actively obstructive. Untrained police had confiscated legitimate medication and obstructed patients’ rights to travel and attend public events with their medication. 

Policy limbo

Our research demonstrated that the current twin policies of prohibition on one hand and the incomplete implementation of legalised prescribing on the other, resulted in a range of harms for medical patients. Stigma around cannabis, couched in the prohibitionist language of UK policy, meant that those with legitimate prescriptions were often still viewed with suspicion by the public, friends and family, and professionals, including doctors and the police. Until we start to have informed and rational discussions about drugs, particularly about their benefits, the harms experienced by already unwell patients will continue. Professional and public education must be supported by appropriate drug policy, as demonstrated by evidence from other countries where legalisation means that prohibitionist narratives and the resulting stigmatising processes have been diminished.

Educating to reduce stigma

As a research team we agree with our patients that education can erode stigma, and have supported their efforts by producing a short, animated film to communicate the key experiences they described – available here.

If you want to read more about the project, you can access the paper for free through our open access article in the International Journal of Drug Policy here

Links to our research outputs and social media channels can be found here.

This piece was written by Dr Helen Beckett Wilson and Dr Lindsey Metcalf McGrath. They are both Senior Lecturer’s in Criminology at Liverpool John Moores University. The image used in the header was created by Sophie Maliphant.

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