Blog Posts

Being honest about struggling with my health.

I haven't written a blog post in quite a while now. I have started plenty but have not had the concentration to write a full post and have it in a state where it is ready to be posted. While I never proof read my posts I do like to make sure that there are… Continue reading Being honest about struggling with my health.

Has the value of the sunflower lanyard changed? What does it mean if you are wearing one now?

5 years ago Im sure the general population probably had no idea what the sunflower lanyard was and what the sunflower symbol stood for. You probably never saw anyone wearing a sunflower. Pre covid travel. I would wear a mask on the plane as always get off the plane with some sort of bug along… Continue reading Has the value of the sunflower lanyard changed? What does it mean if you are wearing one now?

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