Folk.us Our Work
We need you to get involved to make research into health and social care relevant, radical and really really useful
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- Useful Information
If you have any comments about the Website or you can not find what you are looking for then please contact us.
For further information and advice contact Folk.us
Noy Scott House
Royal Devon & Exeter Hospital
Tel: 01392 403049
Joining the Folk.us mailing list means you will be sent, information about our activities.
Folk.us works to support and help develop service user, patient and carer involvement in research. We achieve this by a number of activities.
We develop and deliver Training. For information see Calendar.
We facilitate and enable Collaborative Research. This means we work along side research projects helping them and supporting them.
We create opportunities for networking through our Forums. We attend local, national and international events and conferences to inform and further our work.
In general we give one to one, email and telephone advice to anyone who gets in touch with us.
To view the projects below, click on the Open/Close project icon. To close the project click on the icon again.
We are developing a local research project with people who have experienced head injuries, www.headway.org.uk. A group of service users have joined to form a steering group and we have collected possible research topics from Headway members. We will now be developing a draft proposal to submit for funding consideration.
This is another local project that we are working on. It developed through discussions at our Folk.us Advisory Group and three Folk.us members who are themselves bereaved carers worked with us to do the project. The project collected stories of people like themselves, people who have spent time caring for a person who has then died. It was about what comes next, how carers feel and what they experience.
The project collected digital stories, available at http://www.youtube.com/folkusuk and interviews. The project team ran a successful Social Evening for Carers at the Royal Albert Memorial Museum on 1 June 2012, which was our first opportunity to start to disseminate the results. The full report on the project is available here. Short articles can be accessed at http://www.invo.org.uk/wp-content/uploads/2012/07/INVOLVENewsletterSummer-2012a.pdf and in 'Inside Palliative Care' Magazine (Summer 2012). The project was presented at the INVOLVE Conference on 14 November 2012.
Folk.us is working with 6 of the new Local Clinical Research Networks:
- Diabetes Research Network (DRN), www.ukdrn.org
- Primary Care Research network (SW), www.wren.soton.ac.uk/west.htm
- Stroke Research Network (SRN), www.uksrn.ac.uk
- Dementia & Neurodegenerative Diseases Research Network (DeNDRoN), www.dendron.org.uk
- Mental Health Research Network (MHRN), www.mhrn.info/index.html
- Comprehensive Network
We have done some work about paying people who get involved to try and stop it being so complicated! This article can be found in Volume 26, Number 1, January 2011 of the Disability & Society Journal or click here to see article.
This was a project led by people who have used Mental Health Services (Hounsell & Owens 2005). The article appears by the kind permission of the Mental Health Today Journal. Users in Control
This was a collaborative project undertaken by people who experience migraine and clinicians and researchers. This article appears by the kind permission of British Journal of General Practice. Migraine Project.
David Reinhold has informed us that following on from this initial work they did a second piece of work with migraine patients interviewing GPs. This has been written up and he is currently trying to get it accepted for publication. He has also written a theoretical paper with Annie Mitchell which is in press with the Journal of Interprofessional Care (Kernick D, Mitchell A. Working with Lay People in Health Service Research: a model of co-evolution based on complexity theory. Journal of Interprofessional Care (in press).
'I have developed an interest in headache in children and very recently I have been using a similar approach where school children have been interviewing other school children in a qualitative piece of work to determine the problems with headache in school. I am currently writing this up'.
David Reinhold summarises that this has led to some innovative work but what it does teach us is that we shouldn't under estimate the time it takes to move things through.
This project was also collaborative with a patient initiating the question and then working with GPs and the Researcher to undertake the research. Two articles have been produced about this work both appear by the kind permission of British Journal of General Practice. Opioid Project, Pain Patient.
Dr David Seamark has given us the following update about what has happened since this project was published:
'The pain control work continues with Sue Blake coming near the end of her MPhil. This has involved focus groups and interviews with GPs exploring their attitudes to prescribing strong opioid drugs for chronic non-cancer pain. Based on their responses we have conducted a survey of all GPs in Devon and Cornwall asking for their views on prescribing for these patients. We are just at the point of analysing the replies and then writing a paper which we plan to send to the British J of General Practice (as that was where our paper with Brian was published.) We have developed links with a pain research group at Bath University and hope to do more work in the future.
The original paper has been widely read and quoted and we have had professional contacts resulting from it. Thanks again to Folk.us for supporting that work and especially for empowering Brian to get involved in research.'
We also helped a user led study undertaken by a research team of people with visual impairment (Living Options Devon 2004). The full report is available from Living Options Devon www.livingoptions.org.