Inclusive involvement, participation and voice

We have a strong tradition of participation and involvement in mental health at the University of Essex having appointed Prof Peter Beresford as Chair in Citizen participation in 2016, remaining now as Emeritus Professor in the School of Health and Social Care. Prof Beresford is a leading international pioneer in Mad Studies which is a relatively recently established field of research which centres activism, lived experience and user-led research in mental health.

In this tradition, we have strong collaborations with user-led organisations such as Shaping Our Lives and have several active experts by experience working with our researchers in various ways. Prof Ewen Speed is a core member of the NIHR East of England Applied Research Consortium theme on Inclusive Involvement in Research for Practice Led Health and Social Care and is leading a project enabling Gypsy, Roma and travelling families to co-produce research priorities and identify ways to reduce barriers to accessing physical and mental health care.

Alongside this work, in 2022 we established a mental health research stakeholder group to support our NIHR East of England Applied Research Consortium mental health inequalities project. The stakeholder group includes six experts by experience who have been part of the planning and design of our research from the outset and have formed a Patient and Public Involvement Advisory Group involved in planning our dissemination work and consulting on the design and content of this report.

In the wake of the Saville scandal, an Independent Inquiry into Child Sexual Abuse for England and Wales took place from 2015-2022. Dr Danny Taggart in the School of Health and Social Care played a key role in in the inquiry, offering victims of child sexual abuse the chance to share their experiences and be heard with respect. Dr Taggart’s role involved helping to ensure adult survivors of childhood sexual abuse were supported to provide their testimony directly to the Truth Project, in a way which acknowledged the trauma they suffered and minimised causing further harm.

“The people who came to the Truth Project came from all walks of life and are ordinary people who had also suffered an unusually damaging crime or series of crimes. Many of these survivors had been let down in the past when they tried to tell those in authority about their abuse and had been ignored. The Truth Project offered a different type of opportunity to be finally heard, believed, have their experiences taken seriously and also to make an important contribution to a public inquiry that will lead to social changes.” (Dr Danny Taggart)

Over 6,000 people shared their experiences in the Truth Project, making this the largest example of public participation in an inquiry in UK history. Participants shared details about the abuse they suffered, the impact this had on them and the recommendations for change they would like to see in the future.

Dr Taggart’s subsequent research evaluating the Truth Project has shown survivors need evidence based, trauma-informed support to participate safely in non-recent abuse inquiries and that survivors need to be involved in the design of public inquiry processes in order to ensure this is done effectively and safely. Follow-up consultation with the Inquiry’s Victims and Survivors panel led to 51 recommendations for how public inquiries can maximise benefits and minimise harms of engaging experts by experience.

Dr Taggart is continuing work in this field including work with the UK Victims Commissioner on engaging survivors in lived experience panels. With Dr Susanna Alyce, he is also working on operationalising ways in which child sexual abuse survivors can take part safely in research within a lived experience paradigm.