Forzana Nasir

Patient advocacy and research has become a passion since I was diagnosed with Ehlers-Danlos syndrome (EDS), a hereditary musculoskeletal condition, and its associated comorbidities. My diagnostic journey led to retraining so I could use my lived experience to help others, to bridge gaps between clinicians and patients, and to restore trust and improve patient experience. Originally, I studied human resources and business management, but I had to retrain so I could help other people like me. I am currently a second year Health Science BSc student, and I am helping people understand medical information.

After I found consultants had exhausted all treatment options available for me, I was sent home with a treatment plan of thirteen different medications to be taken four times a day, which medical cannabis helped reduce to just three medications. I was bedbound for two years and had multiple symptoms like disease-related malnutrition. I was vomiting throughout the day. I had multiple subluxations in my ribs and dislocations of my shoulder, ankles, and fingers. I had no real quality of life until I added cannabis into my treatment plan, which was my only option because I could vaporize it. I noticed very few side effects apart from tachycardia , a rapid heartbreat, while finding the correct dose. It has helped with deprescribing, or weaning off medication, and has increased my appetite and reduced vomiting. It is an effective chronic pain reliever. However, for acute pain from dislocations and subluxations, I still take a dose of opiates.

Some patients have ceased opiate use with the addition of medical cannabis. I was treated by a fantastic doctor who is the pioneer of medical cannabis in the UK. He wrote the first prescription in December 2018 at the medical cannabis clinic in Manchester. Products have been available legally to patients ever since. I am the longest continuing prescribed patient in the UK, and I wanted to use my experience to help others, so I founded Can Do.

Because many patients did not gain access to cannabis in 2018, Can Do seeks to highlight them, their conditions, and their needs. Patients need a medicine and clinicians they can trust. We want to help strengthen this connection and rebuild confidence because many patients report a lack of trust. Can Do does not promote private health care because we have a centralized health system. However, we understand it will take time for NHS access to become available. In the interim, we will inform patients about the most affordable ways of getting medical cannabis. We are launching a campaign very soon that will facilitate this further. We want to ensure there is enough evidence for patients to access medical cannabis through the NHS.

We support long-term research, as well as research and development, to understand drug delivery methods and develop products with advanced formulations to ensure quality and bioavailability, or the amount of time it takes for a medication to become effective. We want to show the real efficacy of cannabis as a medicine, help patients have access to gold standard products that do not degrade, and debunk some of the existing marketing myths.

We have a multi-collaborative approach to ensuring patients have access to a therapeutic treatment plan that is personalized and to support the huge investment patients initially make to improve their health outcomes. We are providing a way for patients to voice concerns about their experience without the fear of it impacting their treatment and continuing care. We constantly learn and collaborate with doctors and health care professionals globally. Patients’ feedback and experiences are important, and I want to relay this to clinicians, pharmacists, the government, and producers. Patients need a range of products and a variety of ways in which the medicine can be administered. Some patients may consider over-the-counter products. We want to ensure they are safe and ensure we know where to go. People need real change that benefits them and happens as soon as possible.