Enabling patients to fully understand their diagnosis and treatment is something best done over a period of time, says Ceinwen Giles […]
Ceinwen Giles: Giving patients a cancer diagnosis—what we need is more time
Category: Patient perspectives
David Gilbert: Why we need patient leaders
There’s not much point in training patient leaders unless there are meaningful opportunities for them in decision-making roles […]
Amy Price on shared medical appointments—just say no
It is premature to identify this strategy as medically helpful without clear outcomes and clinical trials, says Amy Price […]
Sharon Roman: In good hands
What are the qualities that make for a good doctor and what can patients do if they’re missing? […]
Joe Fraser: It takes more than language to make a good patient-clinician relationship
If you’re a clinician or a “Type Zero” (someone without diabetes) choosing the words to use when talking about diabetes is not straightforward. That’s true even for “Type ones” like me. The complexity stems from the identity associated with diabetes, and the relationship between those who have diabetes and those who are meant to help […]
Nick Smallwood: Young cancer patients advocate for improved care
For many young cancer survivors, the impact of cancer does not stop when treatment does […]
A collective effort is needed to encourage patient centricity in ophthalmic research
Alastair K Denniston and Xiaoxuan Liu “Why is it so hard for you guys to have us in the room?” a patient asked. Addressing an audience of leading eye researchers, UK funders of research, patient and public engagement teams, the medical media and policy makers, she was one of several patients participating in a recent workshop […]
Bernie O’Reilly: The impact of open disclosure for patients and healthcare staff
Patient advocacy was new to me when I joined Patients for Patient Safety Ireland (PFPSI) in 2015. It was established in 2013 by Margaret Murphy, External Lead Advisor at WHO for Patients For Patient Safety, and facilitated by the Health Services Executive (HSE) Advocacy Unit. My introduction to the group followed an external HSE review, […]
David Gilbert: Asking “What matters to you?”
Asking “What matters to you?” rather than “what’s the matter?” has become a clever bit of reframing within the health service, intended as a phrase to re-imagine the relationship between healthcare provider and those who use services. And to get us to focus on the real needs and wishes of those with health conditions. But […]
Wendy Mitchell: I have dementia and I take part in research. Here’s why
Wendy Mitchell, who has young onset dementia, writes about taking part in dementia research, being valued, and opportunities to change the future. Imagine being given a diagnosis of young onset dementia. Your life falls apart, you feel worthless, and of no use to anyone anymore. Services are non existent so you feel abandoned. That’s what […]