{"id":1335,"date":"2025-02-11T15:19:56","date_gmt":"2025-02-11T15:19:56","guid":{"rendered":"https:\/\/sites.exeter.ac.uk\/relationalhealth\/?page_id=1335"},"modified":"2025-02-18T15:19:43","modified_gmt":"2025-02-18T15:19:43","slug":"what-was-folk-us-2","status":"publish","type":"page","link":"https:\/\/sites.exeter.ac.uk\/relationalhealth\/what-was-folk-us-2\/","title":{"rendered":"What was Folk.us?"},"content":{"rendered":"\n
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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.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

This led to the \u2018Research Who\u2019s It For Anyway?\u2019 Conference held in 1999 and funding for a network of researchers, service users and carers and practitioners \u2013 Folk.us<\/p>\n\n\n\n

Annie was the Folk.us Lead from 2000 until 2003.      <\/p>\n\n\n\n

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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.<\/p>\n\n\n\n

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What was the Folk.us Aim?<\/h1>\n\n\n\n

The Folk.us Aim<\/h2>\n\n\n\n

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\u2019 real concerns in North and East Devon.<\/p>\n\n\n\n

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.  <\/p>\n\n\n\n

How was Folk.us run?<\/h1>\n\n\n\n

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)<\/p>\n\n\n\n

We have had 3 administrators:<\/p>\n\n\n\n

Wendy Rickard was the Research Fellow (2008-2013)<\/p>\n\n\n\n

The Folk.us Director<\/h2>\n\n\n\n
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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.<\/p>\n\n\n\n

Always doing something different from peoples\u2019 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. <\/p>\n\n\n\n\n\n\n\n

How was Folk.us run?<\/h2>\n\n\n
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Folk.us had a Management Steering Group. Then an Executive Group who looked after our day to day running. This included things like how we spent the money, who we employ and who agreed to fund Past Caring.<\/p>\n\n\n\n

Past Caring: A study for bereaved carers, by carers, for carers, with carers. This won the 2013 University of Exeter Research Impact Award, Public Engagement.<\/p>\n\n\n\n

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And Advisory Group of 12 people which included Rosemary and Brian.<\/p>\n\n\n\n\n\n\n\n

Who did we work with?<\/h2>\n\n\n
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What Folk.us did about Publications<\/h2>\n\n\n
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Folk.us guidelines for service users peer reviewing journal articles.<\/p>\n\n\n\n

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We got permission from a well known publisher to put articles and chapters that we or our service user, patient and carer members were authors of on our website so it was open access.<\/p>\n\n\n\n\n\n\n\n

What Folk.us did about Policies and Guidance<\/h2>\n\n\n
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Research Governance Framework 2002 <\/p>\n\n\n\n

Research Governance made simple<\/p>\n\n\n\n

We created a User-Friendly version of the University Contract used to contract suppliers.<\/p>\n\n\n\n

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What Folk.us did about Paying People?<\/h2>\n\n\n\n

Commissioned a report in 2000 and created one of the first policies on paying people for involvement.<\/p>\n\n\n\n

We did a review of all the guidance: <\/p>\n\n\n\n

Rickard, Wendy and Purtell, Rachel(2011) ‘Finding a way to pay in the UK: methods and mechanisms for paying service users involved in research’, Disability & Society, 26: 1, 33 -48<\/p>\n\n\n\n

Training on Welfare Benefits delivered by Devon Welfare Rights Unit for Universities, NHS and County Council Finance and Payroll Staff and Service Users, Patients and Carers.<\/p>\n\n\n\n

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We nearly got Universities wide Finance codes specifically for involvement. Simon at Plymouth tried!<\/p>\n\n\n\n

We have been suggesting creative ways of paying for people’s time. such as paying bills for people.<\/p>\n\n\n

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What Folk.us did about Training<\/h2>\n\n\n
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Understanding users as trainers – Facilitators’ and trainers’ voices. Understanding users as trainers – Users’ voices. <\/p>\n\n\n\n

Two publications led by Sylvia Downs.<\/p>\n\n\n\n

Taking the ‘but’ out of service user involvement: Delivered to Patients, service user and carers, NHS and Academic staff including RD&E, Universities of Exeter, Plymouth, Bath, Research Design services, Doctorate in Clinical Psychology.<\/p>\n\n\n\n

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Bespoke Training<\/p>\n\n\n\n

Introduction to Research – Cerebra Research Unit<\/p>\n\n\n\n

Research Interviewing Training for PIPs in Plymouth<\/p>\n\n\n\n

Training specifically for Patients, Service Users and Carers:<\/h3>\n\n\n\n