Forzana Nasir – one of the UK’s first medical cannabis patients – tells Sue Kirby how it has changed her life as she prepares to launch a new patient advocacy service: Can Do.
BEING told there was nothing more the specialists could do to ease her suffering left Forzana Nasir facing a bleak and incredibly painful future – at the age of just 32.
Now, two years later, this remarkable woman is not only studying for a degree in Health Sciences with the Open University, but is now launching a campaign for the voices of other chronically ill patients to be heard, supporting them in getting the treatment they need.
In 2018 Forzana became a patient at the Medical Cannabis Clinic in Manchester and since then she has become the UK’s longest continuing prescribed patient of the drug and says it has given her a quality of life she never thought possible.
Forzana, sufferers from the rare inherited condition, Ehlers-Danlos Syndrome (EDS), which affects the connective tissue throughout the body, supporting skin, tendons, ligaments, blood vessels, internal organs and bones.
Housebound For Years
Symptoms can include over flexible joints, joints which dislocate easily, non-healing skin, stretched and fragile skin, muscle pain, extreme tiredness and digestive problems.
For some patients EDS symptoms can be relatively mild, while for others, like Forzana, their symptoms can be disabling with many associated conditions such as Mast Cell Activation Syndrome (MCAS), which affects skin, the nervous system, heart and gastrointestinal tract, and Postural Tachycardia Syndrome (POTS), an abnormal increase in heart rate, both of which she has.
Forzana, who lives in London, has had the condition all her life, but her health started to rapidly deteriorate when she was 27.
She said: “I was housebound for two years, I could not maintain nutrition and had no real quality of life.
“I was hospitalised and they basically told me there was nothing else they could do for me.
“It was devastating and very isolating. It has a huge impact on every area of your life, including your mental health.”
A Cocktail Of Medicines To Three
After hearing about medical cannabis, Forzana felt it was the only option left for her to try.
She said: “I was treated by a fantastic doctor – Dr David McDowell – who is a pioneer of medical cannabis. He prescribed the first prescription at the medical cannabis clinic in Manchester.”
Since beginning the treatment Forzana has seen a huge benefit and has been able to reduce her medication from 13 different types of tablets to just three.
She said as well as cutting down on the number of prescriptions, medical cannabis also reduces hospital admissions, acts as an appetite stimulant, helps manage chronic pain and improves sleep.
The health sector student said: “I am not cured and that’s ok because that is not a realistic expectation but the improvement in my quality of life and management of my symptoms is significant.”
Boosting Patient Access
Forzana is so passionate about the treatment and the rights of other chronically ill patients like her, she is launching a patient advocacy organisation called Can Do.
She said: “Medical cannabis treatment can treat many of my symptoms and I have not experienced this before. I was on 13 different medications and they caused terrible side effects, which medical cannabis did not.
“It is a holistic, personalised approach to medicine. It reflects the biopsychosocial model of medicine in treatment and diagnosis which is beneficial to all patient populations.
“We do not want to promote naive sentimentality, but help clinicians develop skills that insulate this model based on lived experience to improve treatment outcomes.”
Can Do wants patients in the UK to be able to access a variety of medical cannabis treatment options, and, for these products to be accessed and regulated in the same way as other medicines are on the NHS.
Forzana said that despite prescribed medical cannabis products being legally available to patients since 2018, many have been prevented from accessing the medicine due to the huge barrier of financial cost, with initial assessment appointments costing up to £250.
Speaking of Can Do, she said: “We have a multi-collaborative approach to ensuring patients have access to a therapeutic treatment plan that is personalised and supports the huge investment patients initially make to improve their health outcomes.
Patients’ Voices Must Be Heard
“We want to ensure there is enough evidence for patients to access medical cannabis on the NHS.
“We support long term research. We want to show the real efficacy of cannabis as a medicine and help patients have access to gold standard products that do not degrade and debunk some of the existing marketing myths.”
Forzana said since reaching out to others, many patients have reported a breakdown in communication with their doctors and a lack of trust, and her organisation wants to help strengthen this connection and rebuild trust by providing a way for patients to feedback concerns without the fear of it impacting their treatment and continuing care.
She said if the whole medical cannabis industry is to move forward in the right way it is essential that the voices of patients are listened to.
She said: “We want patients who use over the counter CBD products, which can be more affordable, to have safe access and access to information they can trust.”
Forzana said she also wants to see the stigma around using medical cannabis reduced and believes people should be free to use this medication in public, just like you would with other medication, such as painkillers and asthma inhalers.
She said it was a Twitter conversation which led to Can Do preparing to launch its first campaign for 1,000 patients to gain access to a prescribed medical cannabis treatment programme which encourages patient retention. She said this has been an issue for some clinics and also has a huge impact on patients’ lives.