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
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.
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?
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?
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
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
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= ……
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
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