an insight into my life with severe asthma, advocacy, awareness & research
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?
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 world is full of negativity just now due to the COVID-19 pandemic. It is naturally a scary time with uncertainty about what the future holds. We don't have the ability to plan going forward as no one knows when the restrictions we have in place will be lifted. Normally around this time of year… Continue reading Let’s Get Positive!!
2020 has been a really challenging year for everyone. After the initial worry of COVID-19 was over I then started to think about what I would do while we waited for the pandemic to be over. The government advised those classed as clinically extremely vulnerable to shield and protect ourselves from the virus. Shielding meant… Continue reading Doing PPI Virtually
I was recently at the first event since the partnership of Asthma UK and the British Lung Foundation. It was fantastic to see BLF colleagues with the Asthma UK logo on their name badges alongside the BLF logo. Also being welcomed with open arms too was lovely. I was a bit daunted to attend this… Continue reading BLF-AUK Respiratory Action Plan Meeting
I am really excited to share with everyone my new logo and branding. I have never thought about branding myself for my involvement and advocacy work but while at HealtheVoices19 it became very clear that this was something I needed to do to become as effective as I could be. It was my chance that… Continue reading Branding!!!!
It is hard to believe that I have been involved in the Asthma UK Centre for Applied Research for 5 years now. Time has gone so quickly. I have had some amazing experiences as a result fo being involved, met some wonderful people and made friendships that I hope will last for a long time… Continue reading AUKCAR ASM NRS Talk
For the past 5/6 years I have been given some fantastic opportunities and invited to be part of a number of very special events and a few events which are still to come. Yesterday was one of those events. Rewind 6 years and I would never even have thought I would be at ease public… Continue reading Patient Centricity
There is so much research into asthma just now looking at a cure for asthma, better management, getting asthmatics to comply with treatment better but research into asthma death, often a taboo subject to talk about is vital to make any change in the shocking asthma statistics. Ann an children's asthma nurse specialist is also… Continue reading Asthma Death in Children
Tuesday evening I had a fantastic time. It was the first meeting for the Critical Care Patient and Public Involvement Group in Edinburgh. Patient and Public Involvement (PPI) in Scotland is no where near as organised as it is in England and funding is woeful, so to establish and run a group is a huge… Continue reading Critical Care does PPI
ANONYMOUS-ASTHMA 