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

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

Three examples of ULR within Ireland 1. 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. 2. 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. 3. 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.

Perceptions and Reactions from Services Perceptions – biased, negatively orientated, methodologically weak, ethically questionable Perceptions – biased, negatively orientated, methodologically weak, ethically questionable Reactions – defensiveness and disregard 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 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

Mental Health Discrimination in Ireland Funded by Amnesty Ireland Funded by Amnesty Ireland Participatory action research 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. 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 Aiming for 600 interviews to be carried out Draft questionnaire developed through inter-rater reliability. 30 semi structured interviews Draft questionnaire developed through inter-rater reliability. 30 semi structured interviews Approximately 570 interviews using the finalised questionnaire Approximately 570 interviews using the finalised questionnaire Deadline, April, 2010 Deadline, April, 2010

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

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

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)

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