User-led research. Reactions and perceptions from within Ireland.

1. User-led research. Reactions and perceptions from within Ireland. Jim Walsh & Paddy McGowan Dublin City University

2. The Early DaysUser-led surveys/research • Monaghan/Home Treatment Team, 2000 • South West area Health Board, Clane, 2000 • Midland Health Board, 2001 • Focusing Minds, Cork Southern Health Board, July 2002 • A Review of Mental Health Services, North Western Health Board, 2003/2004 • What we Heard, 2006. Vision for Change

3. Three examples of ULR within Ireland • Boyle, J and Walsh, J (2009) Improving Acute Psychiatric Hospital Services According to Inpatient Experiences. A user-led piece of research as means to empowerment. • Forrester, S., McGowan, P., and Walsh, J (2008) Exploring the need for advocacy among the elderly population in Ireland who are at risk of or have experience of mental health problems. • Walsh, J., McGowan, P., Nolan, C., Trainor, O., and O’Donohoe, A (2009)Applying user-led research as a means to understanding the mental health professional/patient relationship.

4. Perceptions and Reactions from Services • Perceptions – biased, negatively orientated, methodologically weak, ethically questionable • Reactions – defensiveness and disregard • However these perceptions and reactions experienced are not universal. There have been some positive responses and actions taken as a consequence of presenting our findings to services. We must also acknowledge that it is not only ULR findings that can be negatively received. Academics and health professionals are often frustrated with the inflexibility and inaction from services when presenting research findings and recommendations

5. Mental Health Discrimination in Ireland • Funded by Amnesty Ireland • Participatory action research • Train/skill up approximately 10 people with experience of mental ill health in becoming interviewers. Ideally they would come from geographical ‘clusters’ throughout Ireland. As well as facilitating the interviews the interviewers will be responsible for organising the interviews and most of the recruitment. • Aiming for 600 interviews to be carried out • Draft questionnaire developed through inter-rater reliability. 30 semi structured interviews • Approximately 570 interviews using the finalised questionnaire • Deadline, April, 2010

6. Challenges experienced and expected • Gaining ethical approval • Managing the budget to ensure equity across payments • Achieving the ‘target’ numbers/tight deadline • Attaining recognition and acceptance of the research findings

7. Moving beyond research exclusion • Validation through scrutiny • Reliability through validated research protocols and processes • Partnerships forged? • Having the potential recognised through process outcomes • How independent?

8. On one hand professional organizations publicly encourage the greater involvement of service users (and carers) and acknowledge the legitimacy of direct experience, however on the other there is resistance to non-expert views. Campbell, (2001)

9. If interested in taking part in the Amnesty research contact: Email: muriel.redmond@dcu.ie Tel: 017007923