Emma Sleath – Head of School
Millie Gant, Head of Delivery – Violence Reduction Network
The involvement of patients in the way in which research, practice, and policy is developed has significantly increased in recent times, particularly within health contexts. In other fields, growth in the use of patient involvement, or more commonly known in these contexts as lived experience, has been slower. However, recently, in recognising the importance of ‘experts by experience’ a number of frameworks have been developed to guide, usually researchers, in how they can embed and integrate lived experience into their work (e.g., Survivors’ Charter). This blog attempts to capture our motivations for setting up a lived experience group but also to reflect on the challenges, and hopefully offer some helpful advice for anyone considering doing this in the future.
Emma As a researcher in sexual violence, I have long recognised the importance of amplifying survivors’ voices, however my journey in doing so continues to be a learning one. For example, our final report for the Justice in Covid-19 for Sexual Violence and Abuse project reflected, for the first time in my work, on survivor involvement and evaluated this against the Survivors’ Voices Research Involvement Ladder (Chevous & Perôt, 2019; Kennedy, Bewley, Chevous, Perôt, Vigneri & Bacchus, 2022). We had sought to explicitly be survivor-focussed and trauma informed throughout the project, but we still concluded that there was room for improvement and developed recommendations about meaningful and effective survivor involvement in research. It is against this backdrop that I collaborated with Millie to develop a lived experience group of survivors of sexual violence in the Leicester, Leicestershire, and Rutland area (LLR).
Millie I have long been a passionate advocate for survivors of sexual violence, this began with my role as a Detective investigating sexual offences, followed by working as a SARC manager, for over 6 years. During this role, I worked on an NHS lived experience group and was a co-investigator on the National MESARCH study for over 4 years. I was also involved in leading a multi-agency partnership of organisations involved in supporting sexual violence survivors, called Response to Sexual Violence (R2SV), and I knew the value of shaping our work by integrating lived experience voices, but did not have the funding or opportunity to focus on this. This meant that when Emma contacted me about the Centenary Community Engagement Fund provided through the university’s Leicester Institute for Advanced Studies centre and as part of the University of Leicester Centenary Celebrations, I seized the chance to use this funding to develop what was subsequently called VOICES – Valuing our communities individual experience and skills.
We would welcome in hearing from anyone with regards to this work, or if you think you might want to participate, please get in contact via: VOICES@victimfirst.org.
Watch our video about VOICES.
We have recently been nominated by Leicestershire Police under the category of Working Together for the first national policing Violence Against Women and Girls recognition event.
What we have learned:
Take every opportunity to hear every survivor voice:
We both work in the amazingly diverse community that is the LLR, and we wanted VOICES members to represent these communities. Such communities can often be excluded from involvement, due to concerns about vulnerabilities and capacity to address challenges (e.g., where communities have English as an additional language). We overcame this by developing a model whereby VOICES members are those who have direct lived experience and also key workers from specialist agencies, whose clients may not feel able to attend the face-to-face meeting. This enables engagement to be empowering and for survivors to control how they can be involved in the work of VOICES in a way that is safe for them.
Engage with partners to support development:
We took a co-production and co-designed approach in working with R2SV agencies to develop what form VOICES would take. Recognising agencies’ substantial experience in working with survivors meant that the developed mechanisms and processes were survivor-focussed and this was key to our success. We also wanted to build trust and confidence in our approach, as we were also working with agencies to ask their clients if they wanted to be involved in VOICES.
Pay attention to safety and power:
A key early concern was making sure that participation was safe for all VOICES members, and that our approach to VOICES was collaborative. With regards to safety, we developed a recruitment process that explicitly mapped out where care and support could be accessed, and have taken the time to build trust with our VOICES members. This is a continual process that needs to be attended to, not a single check-point, in the process of working with survivors.
Whilst we both developed this group, the purpose of the group is not to hear our voices in this work, but to step back and empower our members to be heard. As many recognise in this field, abuse is silencing. A start point for us, was to enable members to develop their own agenda with regards to VOICES objectives, and focus on what they wanted to work on in a delivery plan. This feeds into the focus of each VOICES meeting, but as with safety, this is a principle that we will need to continually return to, to ensure that we promote empowerment.
We both recognised the importance of payment for our members and thus far, we have been able to provide a small voucher payment to our members as an acknowledgement of their involvement. However, we both are very aware of the fragility of our budget to do so, and securing additional funding for VOICES is a key objective for the future. We strongly believe that the financial cost associated with running this group, far outweighs the benefits that embedding lived experience into practice can offer.
Consider how to embed the group into governance structures:
This may not be an important objective for all lived experience groups, but we are both keen that VOICES members influence and improve practice and policy in the LLR region in relation to sexual violence. Embedding the group into governance structures in the region increases this likelihood, developing a feedback loop between the work of VOICES and relevant agencies, and building accountability in these agencies to hearing the VOICES members as experts by experience.
Be agile and (gently) persistent:
The title of this section will not be a surprise, as agility and persistence guide the success of many projects, but it is worthwhile acknowledging their importance here. We continually reflected on our processes (often through group coaching sessions) to make sure that we were meeting our original objectives of a diverse and representative group, and amended these where we needed to. Gentle persistence was also needed to continue to engage with R2SV partners to support recruitment, as many agencies are already over-stretched in their daily workload.
Chevous, J., & Perôt, C. (2019). Survivors Voices: Survivor involvement in research ladder (pilot draft 2). https://survivorsvoices.org/involvement-ladder/
Kennedy, S., Bewley, S., Chevous, J., Perôt, C., Vigneri, M., & Bacchus, L. J. (2022). A systematic review that evaluates the extent and quality of involving childhood abuse survivors in shaping, conducting and disseminating research in the UK. Research for All, 6, doi: 10.14324/ RFA.06.1.03.