The idea for Folk.us came from Annie Mitchell, was the Clinical Director, Doctorate in Clinical and Community Psychology, University of Exeter, now Clinical Director at School of Psychology (Faculty of Health & Human Sciences), University of Plymouth.
In the mid to late 1990s Annie, along with service users and carers and other colleagues had decided that if the way research was developed and undertaken did not include the people it was supposed to be about then it was not really going to be of much use.
This led to the ‘Research Who’s It For Anyway?’ Conference held in 1999 and funding for a network of researchers, service users and carers and practitioners – Folk.us
Annie was the Folk.us Lead from 2000 until 2003.
In 2003 Prof Katrina Wyatt, (University of Exeter Medical School) became the Folk.us lead. From 2000 until March 2014 Folk.us was funded by the Department of Health in various forms finishing with the National Institute for Health Research (NIHR). We have been part of University of Exeter, Research and Development Support Unit, Peninsula College of Medicine and Dentistry and finally University of Exeter Medical School.
What was the Folk.us Aim?
The Folk.us Aim
The Forum for Collaboration with Users in Research, to create a research culture which is meaningfully controlled and influenced by those who use, or care for those who use, services, to ensure that research and implementation is focused on ordinary folks’ real concerns in North and East Devon.
To support and develop patient, service user and carer involvement in health and social care research activities to ensure that those who use services and those who care for those who use services inform and guide research at all stages.
How was Folk.us run?
Folk.us had 273 members and we had a critical friend, Bec Hanley who helped us with our thinking. Rachel Purtell was the Director (2001-2014), Sally Bourne was the first Co-ordinator (2000)
We have had 3 administrators:
Wendy Rickard was the Research Fellow (2008-2013)
The Folk.us Director
Rachel Purtell was, to herself anyway, an unlikely choice of Director in 2001. As a disabled woman she never imagined she would end up running a project within a University. She was educated in a Special School in the 70s & 80s. Her Careers Officer told her to be a volunteer for Samaritans as a career.
Always doing something different from peoples’ expectations, at 30 she Graduated with an MA in Disability Studies based on Social Model of Disability from University of Leeds. The final year of which was research. The strange part was, it was this day her Professor handed her the advert for the Folk.us job. What was uncanny was that all the time she was studying she was also working full time for a Service User Led Involvement Organisation.