Blog Posts

Patient Aims vs Clinician Aims when managing long term conditions

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

Evidently Cochrane Blog: Living with Long Term Conditions Part 2

In the second part of a two-part blog for our special series on living with long-term conditions, Brian Devlin, Ceri Dare, Genna White and Olivia Fulton, the four Cochrane UK Consumer Champions, and Emma Doble, Cochrane UK’s Patient and Consumer Coordinator, reflect on making treatment decisions, what they want healthcare professionals to know, and what they would tell their… Continue reading Evidently Cochrane Blog: Living with Long Term Conditions Part 2

Evidently Cochrane Blog: Living with Long Term Conditions Part 1

(I need to say I have just copied this from the Evidently Cochrane site. I have copied it word for word and not made any edits.) Living with a long-term condition: five perspectives – part 1 BY BRIAN DEVLIN, CERI DARE, EMMA DOBLE, GENNA WHITE AND OLIVIA FULTON JUNE 15, 2021 //  COMMENT(S)TWEETSHARE In the first part of a… Continue reading Evidently Cochrane Blog: Living with Long Term Conditions Part 1

An inspiring few days at the SHARP Stakeholder Board Meeting

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

Confidence in your own voice

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

Leaving the Asthma UK Centre for Applied Research

7 years ago I had the privilege of being invited to join the Asthma UK Centre for Applied Research (AUKCAR). At the time I had no idea what I was getting in to. I had no idea what patient and public involvement (PPI) in research was and to be honest was a little daunted at… Continue reading Leaving the Asthma UK Centre for Applied Research

‘Forgetting difficult hospital admissions but then being haunted by memories and not being able to put them together and make sense of them all’

World Delirium Day- 17th March 2021 Delirium is a serious disturbance in mental abilities that results in confused thinking and reduced awareness of the environment. Delirium is rarely spoken about. Many people can feel ashamed because of the delirium they experienced due to the memories they have. There is often the perception that if you are… Continue reading ‘Forgetting difficult hospital admissions but then being haunted by memories and not being able to put them together and make sense of them all’

Discussing smart technology for asthma self-management at the Lung Health Cross Party Group at the Scottish Parliament

The following blog post was shared on the Asthma UK Centre for Applied Research website. I was so privileged to speak at the Lung Health Cross Party Group meeting at the Scottish Parliament. I spoke about digital health and how I have integrated smart technology in my life. "Following her presentation to the Scottish Parliament… Continue reading Discussing smart technology for asthma self-management at the Lung Health Cross Party Group at the Scottish Parliament

Attending (online) conferences as a patient.

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.

Worries of being a patient advocate

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