Ref 24/06
Summary Report: The Cambridge and Peterborough Parliament for People with Learning Difficulties: the experience of members of Parliament

Background
Research on self-advocacy among people with learning difficulties has been limited.  What is known suggests that advocates value their activity in terms of its personal benefits (for example, in forming friendships) rather than its impact upon service provision, over which they perceive themselves as having little control.  However, this work relates to models in which people ‘speak for themselves’ rather than representing constituencies of people with learning difficulties.  Speaking Up!, a well-established group promoting advocacy for people with learning difficulties in and around Cambridge, initiated the Cambridge and Peterborough Parliament for People with Learning Difficulties (the ‘Service Users’ Parliament’) as the first of its kind in the UK.  All other advocacy groups at the time attempted to provide a local voice to people with learning difficulties through direct representation.  The Service Users’ Parliament set out to provide indirect representation through the election of representatives for different constituencies.  

Introduction to the research
This small scale research project looked at the experiences of people with learning difficulties who had acted as Members of Parliament (MPs) in the first Service Users’ Parliament organised by Speaking Up!.  The purpose of the research was exploratory, focused on finding out how MPs felt about their work and what improvements, if any, they might propose for future Parliaments.  The project was jointly managed by Isabel Clare, of the University of Cambridge Department of Psychiatry, and Richard Byers, of the University of Cambridge Faculty of Education.  For the data collection phase of the work, we appointed two part-time project research workers, one of whom was a young person with a learning difficulty.  The Centre for Participation, chaired by Professor Tony Holland of the University of Cambridge Department of Psychiatry, provided advice to the project and monitored processes and outcomes.

Methods
We held an initial focus group with MPs from the second Service User’s Parliament in order to establish topics for an interview schedule.  We then visited 20 MPs from the first Service Users’ Parliament and interviewed them.  In the first phase of the interviews, we triggered memories using a collection of visual materials and real objects and invited people to give us their own accounts of being involved in the Parliament.  We then used a semi-structured schedule of questions to prompt further responses.  The interviews were tape recorded but we also worked in pairs so that one person could take notes.  This enabled us to check our versions of responses at the end of each interview by reviewing a summary of key points directly and immediately with interviewees.  The two project managers also interviewed the young person with learning difficulties who worked with us in all the phases of this project.  This interview focused on her involvement in the project as a co-researcher and has also been transcribed and analysed, yielding a further stream of data. 

Analysis
All the interviews were transcribed and we analysed the data as a team, allowing themes to emerge from the interview transcripts and the summaries of key points made during the interviews.  We then employed a third part-time researcher to trawl through the interview transcripts independently using the NVIVO software package.  This researcher checked and refined the codings that had emerged from the first phase of data analysis.  This process also allowed us to agree some new codes that were suggested by this more sophisticated and detailed second level of data analysis.  

Results
Seven key issues emerged from our analysis of the interviews:
1.	How being an MP changed the lives of MPs.
2.	How the first Service Users’ Parliament helped to change other people’s lives.
3.	People’s feelings about the first Service Users’ Parliament.
4.	MPs ideas about talking, listening and being listened to.
5.	Practical issues in the running of Parliament.
6.	How the first Service Users’ Parliament functioned.
7.	How the Service Users’ Parliament could be improved.

MPs suggested that it might be possible to think about improving the Service User’s Parliament in four main areas:
•	providing more support for MPs, particularly in terms of debating complex topics;
•	giving MPs more choice over the topics discussed in Parliament and more control over how Parliament works;
•	offering more opportunities for advocacy in people’s local areas and within their local services, particularly involving ex-MPs;
•	working to ensure that discussions at Parliament lead to real changes in the everyday lives of people with learning difficulties.

Dissemination
We published an initial account of our research in the April 2005 issue of Louder! (Note – need link to download)), the Speaking Up! Newsletter.  We also reported our findings to the current Service Users’ Parliament, inviting MPs to discuss the four ways of improving Parliament that had emerged from our interviews.  In spring 2006, we were invited to discuss our research at a seminar organised by colleagues at the University of Northampton.  On 2 March 2007, we presented our work at the Working Together for Change conference, organised by the Centre for Participation held at the University of Cambridge Faculty of Education.  The paper that is being written for this conference will be submitted for publication together with a further paper emerging from our work on the active participation in research of people with learning difficulties.  We also expect this project to help to promote further collaboration between the Department of Psychiatry and the Faculty of Education, and further participatory research in the Eastern Region involving the statutory services, local non-governmental organisations and the innovative and multi-disciplinary Centre for Participation.

Link: www.c4p.org.uk
Download: Leaflet
Richard Byers and Isabel Clare – October 2006