Author: Debbie Butler.
I would like to share my latest milestone, 25 years of volunteering and paid work in Research using my experience as a long-term patient of the NHS in many of their services from Mental Health to many orthopaedic surgeries and beyond.
My life for as long as I recall has evolved around hospitals as both inpatient and outpatient, indeed my first memory is of me sitting on the edge of a hospital bed at the age of 3 screaming for my parents, in those long ago days parents were not allowed to stay with their children, very different now how parents are actively encouraged to help in the children’s care.
All I knew about research when I first started was it had the same name as Market Research, little did I know how, in my eyes different it is. Although I guess they both try to help people but in very different ways.
Attending meetings was a nightmare at first as I didn’t understand anything that was happening and there was nothing in place to help other than documents in academic language. (for those of you don’t know, it is very different). The only way I found was to ask questions and this didn’t come easy as I didn’t really know what I was asking about. Part of my experience has been learning this new language and sometimes I find I am using it myself, hey but when in Rome!
However, glossaries come in useful, and I have had my share of helping compile different ones, its hard though as we all learn differently which has to be acknowledged when compiling any documentation. I did see one glossary that was developed for people with learning difficulties these were made up of pictures explaining in simple language alongside hand signs for, I believe, Makaton.
Communication these days comes in all shapes and sizes. Recent studies have had short videos attached to patient information sheets, with videos to aid recruitment and to explain the results of the study(s).
I could go on for hours about communication, but you will be pleased to hear I will not, not here anyway but I am always happy to talk to people about this and offer advice in your work.
Other experiences have seen me, especially before COVID travel up and down the country to attend many conferences and training days. Of course, these days we have the option of in person meetings again alongside hybrid ones. I have to be honest that I am not a fan of hybrid meetings, or indeed virtual ones when there seems to be technology problems which take up half the meeting. I understand the geographical areas we can work in now our useful to get a wider audience sharing their experiences, but it doesn’t take away the trauma during COVID of being amongst the same four walls and talking to a screen especially if you don’t have a good WiFi connection. But after spending time getting to know people in other areas of the country online, it’s good to be able to meet up in person now.
My understanding of academic life over these years has seen me make many new friends and colleagues across the staff and students. Students are only there for a short time, many of them have said to me how fast their time at university goes. I just start to get to know them and blow me they are in the third year and it is time to say goodbye. But through these student friends some were very active in sport and this has led to more connections and talking with the Disability Support Officer at the University led me to falling in love with the gym and racket sports. I now play as much Badminton and Tennis as I can alongside the occasional Table Tennis ‘hit’ with one of the coaches and my friend, an ex-Olympian! These connections through beginning within research and PPI have intertwined my experiences, friendships, development and getting fit and it has helped in managing to escape hospital admissions for 5 years or more!
I have learnt over the years in research more about myself and although my academic prowess at school was, and I don’t mind admitting it below the norm, I am not as thick as I was always told. Whilst this message traveled with me for many years and I am still inclined to believe it but then at times I see the knowledge that comes out of my mouth and I don’t always quite believe it!
I thank the many people I have met over the years, for the introductions and experiences, even if the relationship has been like ships that pass in the night and I appreciate the involvement and everything it has brought me – and I have given them.
I also send a big thank you to those who have nominated me for awards that I have received over the years. It truly has meant a lot. But I am not going any where yet so keep them coming. Here’s to another 25 years!