an insight into my life with severe asthma, advocacy, awareness & research
Last year (2021) I had so many plans for this year especially as my health seemed to be a bit more stable I was looking forward to getting out and about and just living life again but 2 weeks in January that all changed. I cannot believe we are now in October. Time has been… Continue reading 2022 is not my year
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
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
When I woke from the coma and not being able to feel my leg never did I think that a year on there would be no improvement. To be honest I don't think the medics thought it was anything more than temporary too. Over the year I have experienced a lot of different emotions and… Continue reading A year on from that fateful day.
Right now I have so many blog ideas but I have no idea which one to start with and how to get them all done. I sit down to write one and I get an idea for another or a note I need to write down for another blog I have started and want to… Continue reading Too many ideas….dont know where too start
Yes Dr, I will take that as you prescribe despite the horrible side effects stopping me living my life. How often have you found yourself doing this? Do you know that you can speak up and disagree with your Dr or healthcare provider. In the UK when it comes to healthcare traditionally we are not… Continue reading You can disagree with your Dr, its called self advocating.
and how does it differ around the world?? Last April I was in Dallas Texas attending the HealthEvoices (HeV) meeting. A meeting for health advocates to meet and learn from each other. I went out there thinking I knew what health advocacy was but I was wrong to some extent. A while back I put… Continue reading Being a Health Advocate
Hero, warrior, asthmatic, advocate, inspiration, strong are just some of the words I have had people refer to me as recently. While I really appreciate them and am flattered I feel uncomfortable hearing them. Some adjectives I can learn to adapt to such as advocate but others not so much. The word health advocate a… Continue reading What words describe you?
I am not actually sure what title to give this post. I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses… Continue reading Getting medication on time.
My social media platforms have been filled over the last few days with posts about HealtheVoices. The application deadline has been and gone. Yesterday people received their emails saying that they were accepted to HeV20 or were waitlisted or did not get in at all. It fills me with joy and sadness. Sadness because I… Continue reading Friendships from HealtheVoices
ANONYMOUS-ASTHMA 