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To Our Own Tunes

Dancing To Our Own Tunes: reassessing black and minority ethnic mental health service user involvement

NSUN commissioned a consultation exploring the involvement of service users/survivors from black and ethnic communities in mainstream user involvement initiatives in mental health. This work was in partnership with Catch-a-Fiya the black and minority ethnic mental health service users network and was the first of its kind which was fully funded, developed and undertaken by service users and survivors.

The 'Dancing To Our Own Tunes: Reassessing black and minority ethnic mental health service user involvement' was written by Jayasree Kalathil and launched in March 2009. This was followed by a planning event in July 2009 to agree how to take forward the recommendations. Catch-a-Fiya and NSUN continued working together over 12 months and facilitated a steering group that developed a Business Plan and Charter.

The report was reviewed October 2011 and relaunched at the NSUN Annual General Meeting 1st November 2011 and was reprinted March 2013.

Download the full report here.



Mental health groups’ growing fears that barriers between statutory bodies and BME service user initiatives could result in disengagement reveals new report

The momentum of BME service user involvement must not slow down according to a review of the re-released report ‘Dancing to Our Own Tunes’ (TOOTS) which was launched on Tuesday 1st November by the National Survivor User Network (NSUN) and The Afiya Trust.

The report identifies a number of barriers affecting the relationships between statutory bodies and user involvement initiatives. Following recommendations in the original report, an advisory TOOTS group produced set guidelines and a charter to ensure good partnership working between both parties. One guideline in particular is the recognition of the role of service user experiences in making them experts in their own right to inform the nature of partnership working and the solutions to challenges.

In relation to effective user involvement the report recommends:

Link work to change mental health services with broader race and rights based initiatives in education, forensic services, citizenship rights, social inclusion, employment, income generation etc.

Build relationships between mainstream groups and black and minority ethnic groups, between communities and between professionals and service users/survivors.

Enable professionals from Black and minority ethnic communities to think about race related issues in their practice.

Actively seek out groups and organisations working locally, highlight their work and endeavour to support and sustain them.

Sarah Yiannoullou, NSUN Manager, said: "The findings and recommendations in the 2008 report are as relevant today as they were when the consultations were done. There is a renewed onus on national organisations with resources and capacity to support local groups to ensure that the momentum built over the years is not destroyed by funding cuts and policy shifts."

Patrick Vernon, Chief Executive of The Afiya Trust, said: “This report launches the TOOTS charter and guidelines for involvement. It comes at a crucial time when both user involvement and the race equality agenda are underplayed and sidelined in mental health policy. It is our responsibility to ensure that the service user movement as a whole and black and minority ethnic user movement in particular are supported to continue doing the great, and sometimes difficult, work they do in challenging and changing the mental health system.”

Jayasree Kalathil, author of the report and a research consultant, said: “In many ways, service user self-determination and leadership have grown considerably over the years. However, regardless of the rhetoric around putting patients first in the government’s policy papers, user involvement structures and policies are being dismantled across the board. The new mental health policy says nothing about taking forward the legacy of the Delivering Race Equality programme. The shake-up of the welfare and benefits system and cuts to support like legal aid, advocacy and peer support organisations have left many service users vulnerable. I would like to see the recommendations in the report, the charter and the guidelines are taken seriously by the policy makers and organisations they work with in strategic forums.”

Contact: Odi Oquasi (Independent Chair of Catch-a-Fiya) 020 7582 0812 or the author Jayasree Kalathil 07906 165614   

Download the full report here.


Black women, recovery and resilience

Recovery and Resilience presents stories of recovery from mental and emotional distress, based on twenty seven interviews with women from African, African Caribbean and South Asian backgrounds.

The project was developed by Survivor Research and based at the Mental Health Foundation.

Jayasree Kalathil was Project and research lead.

You can download the full report and accompanying documents from the Survivor Research website.