Chronic illness takes so much away from you. It can leave you unable to hold down a job and therefore no monthly income reliant on benefits but more than that it robs you of your ability to socialise. The catalyst for the post was a photo that came up on my TimeHop memories when I… Continue reading The value of volunteering when chronically ill.
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
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.
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
Back on 10th December the news hit the headlines that Asthma UK are to merge with the British Lung Foundation (BLF). It was met online with mixed reviews particularly by fellow asthmatics. I think there was a concern that asthma as a condition might get lost because the BLF covers such a wide range of… Continue reading The Asthma UK and British Lung Foundation Partnership
Today has been one of those days where bits and pieces happened and the end result should make a huge difference. Today was a particularly bad day breathing wise. I knew I was starting late for work as I was due time back but nebbing hourly from 5am was not the way I planned to… Continue reading Small steps will make big changes.