Cost and stigma tarnish experience of medicinal cannabis users

Patients are paying hundreds of pounds each month for prescription cannabis to manage health conditions like epilepsy, according to new research by LJMU’s School of Justice Studies.

Prescriptions are almost impossible to get on the NHS and patients also suffer from stigma, while there is a lack of awareness of the legality of the medicine among law enforcement agencies and even health professionals.

These are among the realities faced by people five years on from the legalisation of cannabis prescribing in the UK, as reported in the International Journal of Drugs Policy by researchers Dr Lindsey Metcalf McGrath and Dr Helen Beckett Wilson of the LJMU Centre for the Study of Crime, Criminalisation and Social Exclusion.

“The challenges facing people prescribed cannabis in the UK are a big added stress on top of being ill,” said Helen, a criminologist.

Criminologist Lindsey’s experience of supporting a family member with a chronic illness, inspired her to team up with Helen, who specialises in drug policy, to understand what life is like for people who are prescribed cannabis in this new context.

Together they have authored the first qualitative, sociological study of the life experiences of UK users, and found nearly all who had managed to access medicinal cannabis were doing so via private clinics and paying many hundreds of pounds.

They also found:

• The prescriptions were working: offering life-enhancing qualities across a range of health conditions, and with few side effects.
• For those with a prescription, they experience stigma - stemming from the fact that cannabis is still illegal more generally. This makes it hard to take their medicine in public places or talk to people about their cannabis prescription.
• There is a lack of awareness of the law change. Some patients had also encountered negative attitudes from doctors and the police. Many felt education is key to overcoming stigma.

Added Helen: “Five years on from the legalisation of cannabis prescribing in the UK, fewer than five people have received a prescription on the NHS.  This results in health inequalities while they are facing daily challenges and stigma because of the wider context in which cannabis remains criminalised.”

On 3^rd November, a short film of the findings will debut at the Drug Science Patient Conference in London as part of Cannabis Awareness Week.

Case study

“Mandy has epilepsy. She told us that for over a decade she had been prescribed a range of conventional medications, none of which had successfully stopped her seizures, and the side effects of which made her forgetful and numb. When Mandy gave birth to her daughter (who is now a toddler) she realised that she had to find a way to stop the seizures so she could care for her. Having done her research, she requested medical cannabis. Her NHS doctor was unable to prescribe but supported her decision to use a private clinic.

Mandy has not had a seizure since she was prescribed cannabis over a year ago, with none of the side effects of her previous epilepsy medications. “Before the medical cannabis, I thought ‘my [child] is going to end up in care, I can’t even look after myself.’ And now I’m living independently, I’m raising my [child] on my own and that’s all thanks to medical cannabis”. Mandy’s private prescription for cannabis costs over £330 a month (a figure which would be significantly higher were it not for a drug research study, which caps the costs for their patients). As the parent of a young child, even the capped costs are prohibitive for Mandy. She is afraid that without the cannabis prescription, her seizures will return, and she will be unable to care for her daughter.

Despite considerable evidence of the harms of prohibition, cannabis remains a controlled drug under the 1971 Misuse of Drugs Act, leaving patients subject to a range of health inequalities and stigma, both from an uninformed public, and professionals who lack training on the 2018 law which permits cannabis prescribing. She described being the victim of a crime on one occasion and calling in the police. The distinctive smell of her medication led to the officers treating her not as a victim, but as a criminal, reporting her to social services. Fortunately, staff from Mandy’s private clinic intervened to explain the legitimacy of the medication to the police and social services, who then halted further action. Situations like this add considerably to the stress on patients with already challenging.”

The paper – The Challenges Facing People Prescribed Cannabis in the UK – is published by The International Journal of Drug Policy.