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Latest News Members of the Service User Advisory Group will be presenting their work at a national conference in Nottingham on November 14 th 2012. The conference is about patient and public involvement (PPI) in research. Editorial team Photography: Scott, Elizabeth, Emma & Alex Graphics: Mark, Susan & Liz Copy: Sylvia, Angela & Sarah Interview: Dean & Sallyanne More details about the conference can be found here: http: //www. profbriefings. co. uk/involve 2012/ More details about INVOLVE can be found here: http: //www. involve. org. uk/ 4
Welcome to our Service User Advisory Group (SUAG) newsletter Who are we? Together, nine ‘researchers’ (researchers from the NHS and the Department of Psychiatry, University of Cambridge, and nine ‘advisers’ (men and women with learning disabilities) meet every two months in Cambridge, to talk about health services research. How did it all begin? In March 2010, members of the LD strand of the ‘Adult Theme’ asked members of the five Community Learning Disability Teams to identify people who might be interested in helping them with their research. The service users were invited to an information workshop to find out more about what it might involve, the role they might play, and how they might help with health services research. Advisers DAVID (Huntingdon) SYLVIA (City) MARK (City) ELIZABETH (South) DARREN (South) SUSAN (East) DEAN (Fenland) ANGELA (Fenland) SCOTT (East) Researchers MARK LILLY SARAH LIZ EMMA ISABEL ALEX SALLYANNE MARCUS http: //www. clahrc-cp. nihr. ac. uk/ 1
What have we done so far? This is where we meet – Douglas House. When we meet, we do different tasks to help the researchers. We have been to Hereward Hall in March, to see what a Community Learning Disability Team looks like and who works there. We presented to members of the Adult Theme Advisory Group. …We also have some fun we get to know each other through activities such as Giant Jenga! We have taken part in an activity to find out more about the way that service users live. The group discovered that we enjoyed taking photographs and that it was a good way to 2 help us talk about our lives.
What have members of the group said about their time in SUAG? ld e I wou Next tim involving out think ab sers from u service rcher t - resea star the We’ve built such a good friendship over the years…it’s not good we finish in 2013 - adviser I’m gettin g lots of question s about this [SUA G] at work, all the tim - adviser e It brings us all together , coming together to talk…getting into small groups and talking about things - adviser sddfghdfh ‘Research goggles’ - a drawing by Mark Molloy, adviser member. The advisers have given us different insights into the realities of the lives of people with learning disabilities - researcher I think we help ed that other blo ke [ researcher] upstairs - adviser arn d me le ut It helpe abo t things differen ve become I’ myself… ndent since indepe , I more to SUAG by coming ne alo avelled iser never tr re - adv fo train be I learnt about pie charts and bar charts - adviser 3