A new patient network aims to address issues with access and safety

While the medical cannabis system in the UK has come a long way in recent years, patients still agree there are a number of issues that need to be fixed.

Patient groups have been established throughout the country with the aim of uniting patients into vocal about improvements to access, medication and the law.

The Nationally Organised Patient Advice and Information Network (NOPAIN) is the latest of these groups to be set up with a goal to giving patients a voice and amending some of the problems with the system. Founder and chairperson Chris McBard talked to Cannabis Health about what convinced him it was time to start the network

“When the mould issue occurred, this caused quite a big issue for myself because I’m suspected to have an autoimmune condition that I’m trying to get diagnosed. I began to feel quite ill from it. I wouldn’t have known or suspected this was the case but I saw it on Reddit.”

Patients communicate a number of ways but one of the most popular channels is through private messages or groups on social media sites like Reddit or Facebook. It can be a quick and easy way to discuss problems with products.

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Patients network

“I felt like this is a danger to patients and I started to see the complaints ramp up. I thought it was a fantastic idea that we created an independent patient network that was basically funded and run by volunteer work. It went on for a few weeks with people getting more upset.”

“A lot of us struggle with mental health conditions. My diagnosis is complex post-traumatic stress disorder (PTSD) so being without my medication has a huge difference to my quality of life. I can understand why people were getting so upset. I’m seeing people complaining about being left in the dark and having to go back to the black market which is a huge problem.”

Chris gave patients on Reddit the option to submit an application that stated what their problems were with the system to see what everyone agreed on. This gave an idea of the types of issues that needed to be addressed.

One issue was that patients were being left without medication and had to resort to black-market products.

“One of the biggest priorities is that people are being left without medication. You have paid a lot of money, taken a leap of faith and outed yourself in some way as a user. Then suddenly you are having to drive down the street to knock on a strangers door to pick up something that isn’t as safe as what we were prescribed. It’s something that needs to be radically improved.”

Transparency

“Another issue is transparency, people feel they get told one thing from one place or another. When it came to the recall, lots of people were refused refunds from certain dispensaries but others passed it through immediately. What we found is that people who have been willing to stand up, fight and push for it have now got full refunds. This isn’t something that should be put on the patient.”

“Knowledge is a very powerful tool especially in the hands of patients. I probably used cannabis for three or four years before I learned more about it. We want general cannabis misinformation to be corrected and we are going to offer pamphlets to different places. There is a lot of work to be done on this. Our aim is to work with the clinics, dispensaries and other organisations involved in the medical cannabis market and help drive improvement.”

Chris explained that another interesting point in writing up the summary of complaints was seeing the diversity of patient issues. While there were some that came up repeatedly, there were a lot more than his own experiences. He added that there had been a number of applications to the board and also to join from high profile applicants.

“The quality of applications has been astonishing. We have digital forensics, research scientists, clinical consultants and a city councillor who has about 30,000 constituents. We have a really diverse group of people from the length and breadth of the country.”

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The finishing touches

NOPAIN are starting to finalise their board and finish their corporate documents to choose trustees for the patient network.

“We were going to form as a nonprofit but it makes more sense to move straight to a charity. Our website is under construction and we’ve just finished branding. We are drawing up a patient code of conduct and then we want to work with dispensaries. The next step will be the launch which is really what we are pushing towards now. There are all sorts of little projects going on. And we’re all just working towards the same achievable goal.”

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