Partnering with people with lived experience

Purpose

This position statement has been co-produced by those with a lived experience of a mental health condition and psychiatrists. The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has developed this position statement for the purposes of recognising the value of and making a commitment to partnering with people with a lived experience of a mental health condition (those with a lived experience). Partnering with people with a lived experience involves strong engagement, clinical governance and quality improvement processes.

Definition

The RANZCP identifies a person with a lived experience of a mental health condition as, ‘An individual, who may be a consumer or carer[a], with knowledge of a mental health condition gained through personal experience.’ Those with lived experience include family/whānau[b]/carers, friends, aiga[c] and other people who have been personally affected and/or who play a role in caring for a person experiencing a mental health condition.[4]

People with lived experience also operate at all levels of and in a wide variety of roles across the mental health system – including individual, service, organisational and strategic roles.[4] Individuals with lived experience may be advocates, advisors and supporters, and may have roles in governance, policy development, planning, service design/delivery, monitoring, evaluation or as a peer worker or similar role.[5] Evidence shows that organisations that work in partnership with people with lived experience achieve more effective service delivery and are better informed in their planning and policy development. [3, 6-8] 

Partnership

Partnership involves respectful and collaborative dialogue between consumers, carers and clinicians. This partnership is underpinned by a recognition that all share the common goal of achieving social and emotional wellbeing for individuals and their communities.[9] The partnership model places the person who is experiencing a mental health condition at the centre and considers their experience as recognised and valued.  [10, 11]. This model of engagement also recognises individual human rights, including the right to self-determination throughout any care and treatment discussions.[12] The partnership process aims to uphold the dignity of all persons and to draw attention to unique knowledge and skills that can be used to enhance care for individuals and support for communities. [13, 14]

The principal ways in which the RANZCP works with people with lived experience are through the RANZCP Community Collaboration Committee (CCC) [d], the Aboriginal and Torres Strait Islander Mental Health Committee and Te Kaunihera mo ngā kaupapa Hauora Hinengaro Māori (Te Kaunihera) – RANZCP Māori Mental Health Committee, which all feature lived experience community member representatives. These committees may also include perspectives from psychiatrists with lived experience of a mental health condition themselves. For more information, see RANZCP Position Statement 85: The contribution to practice made by psychiatrists who have a personal experience of mental illness. [15]

A model of partnership

The RANZCP partnership committees work with people with a lived experience using a range of methodologies including consulting, co-design and co-production. The starting point for all aspects of this partnership is open and transparent conversation.[3, 16] This includes structured processes which allow for power sharing and mutual collaboration, recognising that all parties bring critical perspectives and valued insights to the goal.[17, 18] The RANZCP aims to reflect a diverse range of perspectives in its engagement with people with a lived experience. This commitment includes actively seeking to recruit individuals who represent a lived experience perspective, and who may hold critical opinions of their experience of psychiatry. Understanding both positive and negative experiences is essential, allowing for reinforcement of good practices and suggestions to improve practices deemed to be harmful for those needing psychiatric care.

There will often be different experiences of similar care.[5] What may be deemed suitable and helpful for one person may not be preferred by another.[5] Individuals may also experience contrasts within their own experience, where their views on treatment may be positive, but experiences of care may be negative and vice versa.[3] These perspectives add great value to the work of the RANZCP in developing positions on models of best practice care and treatment. In order to best realise the above goals, the RANZCP strongly affirms the importance of open and transparent lived experience engagement, whereby the perspectives, diverse needs, concerns and the values of communities are incorporated into guidelines and recommendations. Importantly at the outset of projects, the RANZCP affirms the value of clearly communicating the scope of involvement and expectations of committee members and others with a lived experience, explaining where their participation fits on the continuum of engagement (from seeking feedback through to co-production).[19]

There are three primary domains in which RANZCP aims to apply the above approach:

Policy development

The ongoing development of position statements and professional practice guidelines co-developed with people with lived experience is essential to understanding and promoting strategies that enhance treatment, its effectiveness and the mental health systems that deliver them.[20] Across the RANZCP, lived experience voices are further incorporated into policy development in a broad range of practice areas. The partnership committees provide guidance which includes, but is not limited to; policy, planning, publications, training of psychiatry registrars and continuing education of members.

Advocacy

In partnership with RANZCP members and staff, committee members with a lived experience co-develop RANZCP submissions to government and other organisations. The goal of this work is to advocate for improvements to standards, resourcing, and service delivery across the mental health sector for all people. Through working with people with lived experience, the RANZCP aims to embed its advocacy towards improvements to service delivery in the lived experience of those we serve, as well as the body of clinical knowledge and expertise of the profession.[21]

Education

The RANZCP seeks to provide people with a lived experience opportunity to present their perspectives at a wide range of RANZCP meetings. These presentations provide all members, trainees and international guests the opportunity to hear directly from those with a lived experience; their views on how to improve services for, and community attitudes toward, all people affected by a mental health condition.[22] [23]. The voices of people with lived experience also play a critical role in reducing misunderstanding and stigma towards those experiencing a mental health condition in the community and improving community attitudes toward all people.

Conclusion

Engagement with people who have lived experience in all aspects of mental healthcare has had transformative effects on service delivery and models of care.[24] The involvement of those with a lived experience in RANZCP governance and work is essential to improving the profile, mental health and understanding of individuals and communities across Australia and New Zealand. This consistent and authentic partnership contributes to improving the culture and practice of psychiatry.

Recommendations

The RANZCP commits to improving the delivery of psychiatric care and mental health services by partnering with people with lived experience. This includes:

• Supporting psychiatrists to work in partnership with people with lived experience so they can have genuine input in research, planning, monitoring, and implementation of treatment and care.
• Appointing people with lived experience to RANZCP committees; considering relevant experience, the advice of members, those with lived experience and key partner organisations.
• Supporting and promoting the role of people with lived experience in advocating for improvements in policy and health services.
• Including people with lived experience in the training and professional development of psychiatrists.
• Improving educational resources available for the benefit of people with a lived experience of a mental health condition.

Additional reading

Boyle, D., Coote, A., Sherwood, C., Slay, J. Right here, right now: Taking co-production into the mainstream; 2013.

Victorian Government, Department of Health and Human Services. Balit Murrup: Aboriginal social and emotional wellbeing framework; 2017.

Health Expectations: An International Journal of Public Participation in Health Care and Health Policy.

Health Quality and Safety Commission New Zealand. Engaging with consumers: A guide for district health boards; 2015.

Mental Health Australia. Co-design in mental health policy; 2017.

Mental Health Commission of New South Wales. Lived Experience Resources; n.d.

RANZCP Victorian Branch Position Paper. Enabling supported decision-making; 2018.

RANZCP Victorian Branch. Enabling supported decision making e-learning module; 2018.

Te Pou o te Whakaaro Nui. Engagement Essentials.

National Development Team for Inclusion. Position paper: Are mainstream mental health services ready to progress transformative co-production? 2016.

Daya, I., Hamilton, B., and Roper, C. Authentic engagement: A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice; 2020.

[a] The terms ‘carer’ and ‘consumer’ are used where differentiation is required for the purposes of document clarity. The RANZCP acknowledges that both carers and consumers have a lived experience and that the roles are not mutually exclusive. The RANZCP also acknowledges that ‘carer’ and ‘consumer’ may not be the preferred terms of individuals.

[b] Whānau (pronunciation: fa:no) is a Māori word used to describe an extended family group spanning three to four generations. The whānau continues to form the basic unit of Māori society (Rāwiri Taonui).

[c] Aiga - The term Aiga as used in the Samoan sense includes not only the immediate family, father, mother and children, but also the whole union of families of a clan and even those who although not related are yet subject to the family control. (Victoria University).

[d] The CCC also oversee appointments of those with lived experience to other relevant RANZCP bodies, including jurisdictional committees, faculties and sections and other interest groups.

Responsible committee: Community Collaboration Committee 

References

1. Consumer and Carer Participation Policy: A framework for the mental health sector: National Consumer and Carer Forum; 2004 [Available from: Consumer and Carer Engagement (nmhccf.org.au)
2. Chisholm L, Holttum S, Springham N. Processes in an Experience-Based Co-Design Project With Family Carers in Community Mental Health. SAGE Open. 2018;8(4):2158244018809220.
3. Daya I, Hamilton B, Roper C. Authentic engagement: A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice. International Journal of Mental Health Nursing. 2020;29(2):299-311.
4. Lived experience: Mental Health Reform Victoria; 2020 [Available from: https://www.mhrv.vic.gov.au/lived-experience.
5. National Mental Health Commission. Sit beside me, not above me: Supporting safe and effective engagement and participation of people with lived experience. 2018.
6. Larkin M, Boden ZVR, Newton E. On the Brink of Genuinely Collaborative Care:Experience-Based Co-Design in Mental Health. Qualitative Health Research. 2015;25(11):1463-76.
7. Corrigan P. Best practices: strategic stigma change (SSC): Five principles for social marketing campaigns to reduce stigma. Psychiatric Services 2011;62(8): :824–6.
8. Corstens D, Longden E, McCarthy-Jones S, Waddingham R, Thomas N. Emerging perspectives from the hearing voices movement: implications for research and practice. Schizophrenia bulletin. 2014;40(Suppl_4):S285-S94.
9. Wallcraft J, Amering M, Freidin J, Davar B, Froggatt D, Jafri H, et al. Partnerships for better mental health worldwide: WPA recommendations on best practices in working with service users and family carers. World psychiatry : official journal of the World Psychiatric Association (WPA). 2011;10(3):229-36.
10. Sweeney A, Filson B, Kennedy A, Collinson L, Gillard S. A paradigm shift: relationships in trauma-informed mental health services. BJPsych Advances. 2018;24(5):319-33.
11. Bailey S, Williams R. Towards partnerships in mental healthcare. Advances in psychiatric treatment. 2014;20(1):48-51.
12. Slade M. Implementing shared decision making in routine mental health care. World psychiatry. 2017;16(2):146-53.
13. Faulkner A, Carr S, Gould D, Khisa C, Hafford-Letchfield T, Cohen R, et al. ‘Dignity and respect’: An example of service user leadership and co-production in mental health research. Health Expectations. 2019;n/a(n/a).
14. Clark M, Bradley E. Carers and co-production: enabling expertise through experience? Mental Health Review Journal. 2015.
15. RANZCP Position Statement 85 - The contribution to practice made by psychiatrists who have a personal experience of mental illness  [Available from: https://www.ranzcp.org/news-policy/policy-and-advocacy/position-statements/the-contribution-to-practice-made-by-psychiatrists]
16. Wellways. Co-production framework. Melbourne. Victoria.2019.
17. Slay J, & Stephens, L. . Co-production in mental health: A literature review. . London: New Economics Foundation; 2013.
18. Slay J, Robinson, B. . In this together: Building knowledge about co-production. . London.: New Economics Foundation.; 2011.
19. Slay J, & Stephens, L. . Co-production in mental health: A literature review. London: New Economics Foundation; 2013.
20. Banfield MA, Morse AR, Gulliver A, Griffiths KM. Mental health research priorities in Australia: a consumer and carer agenda. Health Research Policy and Systems. 2018;16(1):119.
21. Roper C, Grey, F., Cadogan, E. . Co-production: Putting principles into practice in mental health contexts. University of Melbourne.; 2018.
22. Hayman F, Fahey A. Involving carers in mental health service development. Australasian Psychiatry. 2007;15(3):191-4.
23. Stewart S, Watson S, Montague R, Stevenson C. Set up to fail? Consumer participation in the mental health service system. Australasian Psychiatry. 2008;16(5):348-53.
24. Byrne L, Happell B, Reid-Searl K. Lived experience practitioners and the medical model: world’s colliding? Journal of Mental Health. 2016;25(3):217-23.

Disclaimer: This information is intended to provide general guidance to practitioners, and should not be relied on as a substitute for proper assessment with respect to the merits of each case and the needs of the patient. The RANZCP endeavours to ensure that information is accurate and current at the time of preparation, but takes no responsibility for matters arising from changed circumstances, information or material that may have become subsequently available.