Healthcare is a minefield sometimes and being a patient navigating through it can be really hard work and not the type of hard work you want to be doing when you are unwell or in pain. With chronic illness you often become an expert in your own condition and can therefore speak up for yourself… Continue reading The Impact of Conflicting Information
Clinicians showing vulnerability and learning from patients is so refreshing. This is my recent experience which I wanted to share as I hope it will allow patients to understand clinicians but also hope that any clinicians reading this will understand what is important to us as patients. My involvement in the Severe Heterogenous Asthma Research… Continue reading Patient Aims vs Clinician Aims when managing long term conditions
If I had to be honest I was not sure what I thought would be the outcome of the Stakeholder Board Meeting for SHARP an ERS Clinical Research Collaboration. During my time as a patient involved in research I have been to many meetings, board meetings, scientific meetings and each time gone into the meeting… Continue reading An inspiring few days at the SHARP Stakeholder Board Meeting
Surprisingly I never used to be vocal. 5 years ago I used to much rather sit in a room, listen and not participate. I felt like I had no right to contribute to the conversation because who was I. I was just a patient, a person who lived with a chronic health condition, but I… Continue reading Confidence in your own voice
The patient voice is becoming such a valuable asset to medicine, medical research, pharma development and medical conferences. After all you can learn all the technical stuff about the anatomy and physiology in text books but you can never learn just what it is like to live with a certain condition unless you go through… Continue reading Attending (online) conferences as a patient.
Patient advocates seem to give off this impression of being fearless, great speakers and always knowing the right thing to say. I often looked patient advocates and admired their confidence and strength for the work they do. I still do. It has only been in the last few years that I have really identified as… Continue reading Worries of being a patient advocate
From a young age we all have our dreams and aspirations as to what we want to be or do when we grow up. Our childhood dreams often don't quite equate to the reality of life. When we grow up you think that being Superman is just as much a possibility as being a Dr.… Continue reading Finding your other path in life.
A lot of the work I do is speaking to people about what it is like to live with asthma. Asthma is a condition that you should be able to live with and it won't interfere too much but for so many people asthma dictates their life. It is so important for those who work… Continue reading Bringing the patient voice to Research and Development
Yes Dr, I will take that as you prescribe despite the horrible side effects stopping me living my life. How often have you found yourself doing this? Do you know that you can speak up and disagree with your Dr or healthcare provider. In the UK when it comes to healthcare traditionally we are not… Continue reading You can disagree with your Dr, its called self advocating.
I am not actually sure what title to give this post. I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses… Continue reading Getting medication on time.