an insight into my life with severe asthma, advocacy, awareness & research
"There is no reason for your wound not to heal or keep getting infections. You must know something more about it that you are not telling us.....we will not offer you any further intervention with your wound" These were the words I heard from a Dr in April last year on the 21st to be… Continue reading Psychological impact of medical gaslighting a year on
It has been so concerning recently to see so many posts where people are really angry and say they have had an inhaler swap. When you explore a little bit more you find out that it is not actually an inhaler swap. We all have our preferred device, and brand of medication which can differ… Continue reading What is an inhaler swap?
Medical gaslighting is a term that I have seen around on social media quite a bit over the last year or so. I would read stories about patients experiences of poor medical care or incorrect assumptions made by medics which have been devastating for the patient and feel blessed that this has never happened to… Continue reading Medical Gaslighting
For those who follow me on social media will be aware that I recently had to be admitted to hospital for emergency abdominal surgery. Of course I was shocked at the prospect of needing surgery and the speed at which everything happened but looking back on it I realised I have totally normalised going into… Continue reading Emergency Surgery and Normalising Hospital Admissions
The short answer is NO and there needs to be a big changes for that to happen. I have actually written this blog post twice. The first incarnation was me getting my feelings off my chest but I decided not to post it as it would not be helpful to anyone. Instead I have decided… Continue reading Are patient co-authors an equal part in the research team?
This gets forgotten so many times. I have spent a lot of time thinking about this post, how I should word it and if I should share it but after speaking with a number of other volunteer patient advocates I feel it is important to share what we face. Firstly though I need to clarify… Continue reading Patient Advocates are volunteers
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
ANONYMOUS-ASTHMA 