Rosemary, a bereaved carer, reflects back on her battle to preserve her mother's dignity after she had a stroke.
Our work
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.
Current Projects
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 in 'Inside Palliative Care' Magazine (Summer 2012). The project was presented at the INVOLVE Conference on 14 November 2012.
Past Projects
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.