I first noticed two patches of white skin about 10 years ago, when I was 47 years old. The patches were on the inside top of my thighs, symmetrical to each other. I had just returned from a holiday abroad and the white patches stood out. At first they didn’t really bother me because the […]
Category: Patient perspectives
Tamás Bereczky: Patient advocacy and the HIV community
I have been working as a patient advocate, peer helper, treatment literacy trainer and policy advocate in the HIV/AIDS field for more than a decade now. HIV is no longer looked at as a standalone illness, instead we talk about a syndemic that is described as the combination and concurrent appearance of HIV, hepatitis C […]
Dave deBronkart: Can a compelling graphic lead to better care plans?
This graphic was published last year with little fanfare. Recently it appeared on social media in patient circles, and was immediately met with dozens of shares, comments, tweets, and retweets: • “Smart way to communicate chronic disease burden.” • “One for clinicians to ponder if they think they understand the burden of Type 1 diabetes.” • […]
Tessa Richards: Patients combat corruption in healthcare
Corruption in health systems has been described as “one of the biggest open sores in medicine.” It occurs in many guises and all countries. Patients may be unaware of the price they pay for corrupt procurement processes, manipulation of drug trial data, and conflicts of interest, but they are well aware if they need to make “informal” […]
Paul Buchanan: On being the token patient
Healthcare systems have been built with hierarchies, processes, and models of engagement that are designed to distill policy, research, therapy, diagnostics, treatment, and support down to the patient. The patient and their treatment is the “end-game.“ But how well does the system work? Let’s take a look from a patient’s perspective. Several recent examples weeks […]
Tessa Richards: Patients’ role in making care safer
Patients don’t only access services. They observe them acutely too. As they lie in hospital beds and are “processed” through outpatients and emergency centres they perceive quality and safety at the sharp end. They and their carers are also innately alerted to when “something is not right;” either in themselves, or the health system. So […]
Leo Kroll: My “lived” experience of cancer and psychosis
Susan Sontag’s Illness as Metaphor challenges the notion that we hold responsibility for the illnesses that afflict us. She states: “Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about a disease.” My own two episodes of serious illness forced me […]
Ceinwen Giles: Self-management? I need a PA!
Patient activation, self-management, shared decision-making….all of these sound great in practice. I, personally, would be very happy to self-manage myself. If I could figure out how. I never set out to be “a patient” when I grew up but life takes turns you don’t see coming. Seven years ago I was diagnosed with Stage 4 […]
Paul Buchanan: Overwhelmed
Feeling overwhelmed. Sometimes that’s what being a patient is all about. Consultations, appointments, tests, results, advice, and therapy “choices”—what on earth am I meant to do? I’m not sure I even know what I’m being asked half of the time. At home, at work, at school—not depressed, not unhappy, not fed up, just overwhelmed. Overwhelmed […]
Derek Mitchell: MyStoma—putting patients at the heart of service improvements
Some years ago I underwent major surgery for the removal of my inflamed colon. I had suffered from ulcerative colitis for too long and the time had come to make a change. I have now had my ileostomy for seven and a half years and my life is much better than it was before. As […]