Many patients have conditions where they need to take medication for the rest of their lives. Living with a chronic condition can have a profound effect on a person's life, from a change in their lifestyle to even being forced into an alternative career plan. Taking daily medications becomes a part of their new routine and for many these treatments help improve their health and their overall quality of life, but sometimes they can also create other problems and patients may enter in to an ‘internal battle’ to take them.
I am one of those patients
At the age of 19, I felt my world had been turned upside down when I received a diagnosis that I never expected and initially really struggled to accept. I resented that I would have to rely on medication for the rest of my life as well as the implications my new diagnosis would have. However my attitude definitely changed as I gradually came to terms with my condition, and realised that things were not as bad as I first thought! My medications do more for me than just helping to keep me healthy and my condition under control. They enable me to have the freedom to be "normal" and go about my daily life without constantly worrying about being unwell. They help me to stay out of hospital, to work, go on holiday and make plans, and so for all of this I love them. I wonder how many people can say they have something as powerful and positive in their lives.
However, a part of me hates them too for the side effects that they come with. For many patients, a balancing act must be achieved between finding the most effective dose but with the least amount of side effects. Personally I feel switching feels risky when other medications aren't guaranteed to be as effective and come with their own set of (often similar) side effects, and so it can become a case of "better the devil you know".
I love them, but I hate them
I feel lucky because I have a specialist who is incredibly knowledgeable, and who takes the time to listen to my concerns and what is important to me and involves me in decisions around my care. However he is a busy consultant and it can be months in between seeing him, and what if I have problems with my medication in the interim period?
Having recently increased one of my medications, I found myself at the end of my tether struggling with side effects and felt pretty miserable. I fleetingly flirted with the idea of stopping them for a few days just so that I could have a respite from feeling unwell, and know that I am not alone with this feeling. I am aware of the dangers associated with this and so wouldn’t stop medication without appropriate medical supervision, but I can definitely understand and empathise with people who feel pushed to this extreme.
So what could help?
· Patient information leaflets need to change and include more details. They often tell patients to get in touch with their doctor if they have problems, but this often isn’t easy when clinics are frequently fully booked. GPs are commonly unable to advise with specialist medications. Patients value advice and information about not just what, if any, of the side effects someone might expect, but also which of those side effects are like to be transient and if perhaps I (and patients like me) should persevere to see if they subside. There is also a large scope for practical suggestions on things that they can try to help alleviate these symptoms.
· Signposting to patient friendly websites. In my view, the companies that manufacture the medications prescribed to me by my doctors could add considerable value to their products by pointing users to authoritative and evidence-based patient friendly websites with more relevant and easily digestible information - or linking directly to their own version of this. These need to offer general advice and support around disease management as well as information about their medication.
· Industry-led patient forums. Commonly patients gravitate towards online forums to ask other people with the same condition for their recommendations and experiences, but these often aren't monitored or regulated and there can be huge differences in the accuracy and helpfulness of information shared. Developing forums that are facilitated by industry experts from within the medical and pharmaceutical industry could have a significant positive impact and reach many people.
In my view, pharmaceutical companies could do much more to support patients’ alongside what they already do in terms of educating healthcare professionals. At Branding Science we work with our clients to understand how patients really feel about their condition and their medication, and what they want and need from their treatment. Ultimately we want patients to really engage with their treatment and truly value the medicines they use on the basis that those medicines are enabling them to have a better quality of life sustained over a significant period of time. Ideally this kind of patient/medicine relationship should lead to the development of brand loyalty amongst patients and healthcare professionals alike and will contribute towards the building of a deeper trust with the industry.
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This blog was written by Linzie Reason, Marketing Communications Executive at Branding Science