The journey My work in international relief as a psychologist and cognitive rehabilitative consultant did not prepare me to be a trauma patient with brain damage. The injuries showed me we patients need to be full partners in our own healthcare and that we need a bridge. That bridge is evidence and the vehicle through […]
Category: Patient perspectives
Dan Smyth: Patient involvement in the European Respiratory Society Congress 2015-16
The European Lung Foundation (ELF) brings together patients and the public with respiratory professionals to positively influence lung health. ELF works with a network of patient organisations and individuals (via the European Patient Ambassador Programme) who take part in the European Respiratory Society (ERS) International Congress. The aim of having patient organisations at the congress […]
Amy Price: A patient’s perspective on statins
What I wish my doctor could know is what he has no access to. That is all the data for medicines he prescribes. My GP is an incredible doctor but no one can do their best work with inaccurate tools or partial knowledge. This is my story. […]
Patients need to have a say on the junior doctor’s contract dispute
An open letter to Jeremy Hunt and The BMA We are patients who have had life-changing illnesses, injuries, or disabilities. We have worked for years to get patients and carers to be more involved in healthcare policy and practise at a local and national level. We do not “represent” anybody. This statement is a collation […]
Lisa Steen: The wilderness of the medically unexplained
This patient perspective essay was written by Lisa Steen. She has since died. We have permission to publish the piece from her husband, Raymond Brown. I am a GP, formerly a trainee psychiatrist and now 43 years old. In July 2014, I was diagnosed as having kidney cancer with multiple bone metastases. The cancer was […]
Rachel Thomas: The final frontier
Six weeks without gravity. Cushioned in a single white space for the duration. Air tanks, tubes, and pressure gauges surrounding me, the calendar days marking off a gentle, indistinct blur. And now, finally, here I am, learning to walk again. My body shakes under the exertion. The simple act of straightening a leg, of now bearing […]
Rosamund Snow: What to call junior doctors—a patient’s perspective
The Royal College of Surgeons of Edinburgh have recently called for a change in the way we refer to junior doctors–“junior” and “trainee” sounds too pejorative and affects the morale of these “highly skilled and dedicated professionals.” I’m not convinced that this kind of change would make a lot of difference to doctors’ morale or […]
Matthias Wienold: Innovations that work—new tools for patients’ participation in research
Recently I was asked to identify a patient driven innovation for a workshop at the 7th Global Patients Congress. The title was “Patient organisation led innovation—what works?”. The innovation I chose is known as community advisory boards (CABs). Such boards are common tools in local and regional organisations of healthcare, but they also exist on national […]
Tessa Richards: “Therapeutic relationships”—prized but hard to deliver
I hate to think of what I’ve cost the NHS since I was diagnosed with cancer in 2004. This year alone I’d need to factor in 12 outpatient appointments, seven MRI scans, and a course of radiotherapy. And “the worst is yet to come,” as one consultant I saw wryly reminded me. But sufficient unto […]
Suzanne Gordon: Encouraging all members of a medical team to speak up
The oval, mahogany table dominates the center of the large conference room. A number of chairs circle the table and dot the perimeter of the room. Every week, a group of high level hospital administrators, physician leaders, and leaders of other professional and occupational disciplines—physical therapy, social work, clinical directors of nursing, housekeeping, etc—gather in […]