What does it mean to be dyslexic?

Is having dyslexia a gift or a superpower? Princess Beatrice recently spoke about her experience of having dyslexia. She referenced it as having a gift. This of course has sparked some debate among others with dyslexia. An article written in The Scotsman newspaper recently gave a very real account of what it is like to… Continue reading What does it mean to be dyslexic?

Virtual Pacing

Who knew attending events virtually was just as tiring as in person events. When you live with a chronic illness pacing is not a new concept. We have to continually make decisions about what we events we are going to attend, what we will miss and also what events are worth several days recovery and… Continue reading Virtual Pacing

Patient Experience of Mechanical Ventilation

https://youtu.be/sYYjzNS3c3A I was asked to record a video for part of the Respiratory Critical Care session at the European Respiratory Society Congress. The session was titled "New Developments in Mechanical Ventilation and Ventilator Weaning" and my video was to focus on my experience of being weaned from a ventilator. Im not going to lie it… Continue reading Patient Experience of Mechanical Ventilation

Inhaler industry + tobacco industry= ……

not a good combination. A few weeks ago in the press there was a lot of interest in the story surrounding the UK inhaler group Vectura and Philip Morris International. Philip Morris International is one of the largest if not the largest tobacco company in the world. Vectura is a pharmaceutical company in the UK… Continue reading Inhaler industry + tobacco industry= ……

The Impact of Conflicting Information

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

My Story living with severe asthma

but the publishing of my story in The Lancet Respiratory Medicine left a really bad taste in my mouth. The article was published back on the 7th July but I didnt know this. I didnt know until yesterday that it was live. I didnt find out it was live because The Lancet got in touch… Continue reading My Story living with severe asthma

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