The PATHWAY Study: Developing and evaluating a new care pathway to improve outcomes for people with complex trauma
Welcome to the PATHWAY webpage. We are a team of researchers, including trauma survivors and clinicians, based in survivor-led organisations, universities, and the NHS. We want to understand how people who have experienced complex trauma can have better access to the services they need. By complex trauma, we mean trauma that was ongoing and happened more than once. People do not need a diagnosis to have experienced complex trauma.
Many people who use mental health services have experienced complex trauma. This can include violence, abuse and neglect as well as social traumas like poverty. People from racialised communities can experience trauma associated with racism and discrimination, and can face inequalities when trying to access mental health services. Complex trauma is often not properly understood in mental health services, and this means that many people do not receive the support they need. Because of this, some people are misdiagnosed, pathologised and bounced between services. When this happens, some may decide to seek support from outside of the NHS.
PATHWAY is made up of several studies that are about people’s mental health and trauma care pathways. By care pathways, we mean assessment and referral to appropriate support. The aim of PATHWAY is to investigate some key questions so that we can prepare a proposal for funding for a much larger programme of research. This larger programme would develop and evaluate a new pathway for complex trauma survivors so that people can get access to the support they need more easily.
PATHWAY is made up of five studies.
1) We will interview people who have a) experienced complex trauma and b) who have accessed support for trauma in the NHS or outside the NHS (e.g. in a charity). We will ask people about their experiences of seeking support and how they would like mental health services to respond to trauma.
2) We will work with Survivors Voices to consider how we can make interviews feel safe and ‘trauma-informed’ for people who have experienced complex trauma.
3) We will interview staff working in mental health services and specialist trauma services, inside and outside the NHS, to consider challenges and best practices in assessment and referral for complex trauma.
4) We will explore how complex trauma is recorded in clinical notes.
5) We will consider all of these questions from the perspectives of people from racialised communities.
PATHWAY is helping us to understand some of the key issues for research on this topic. This includes the best ways of conducting interviews with trauma survivors. This will help us prepare a proposal for funding for a much larger programme of research. If funded, this larger programme would develop and evaluate a new pathway for complex trauma survivors so that people can get access to the support they need more easily.
Dr Angela Sweeney (King's College London)
Professor Steve Gillard (City, University of London)
Jessica Jones-Nielsen (City, University of London)
Jacqueline Sin (City, University of London)
Jane Chevous (Survivors Voices)
Professor Frank Röhricht (East London NHS Foundation Trust)
Roz Etwaria (Little Ro)
Siofra Peeren (King’s College London)
Bethan Mair-Edwards (King's College London)
Charlotte Rowe (City, University of London)
Lewis Benjamin (City, University of London)
The Lived Experience Advisory Group (LEAG) is facilitated by the survivor-led organisations Survivors Voices and Little Ro. The LEAG ensures that we are diverse in terms of experiences of complex trauma, socio-demographics, geographical location, and mental health and trauma service use. The LEAG meet to comment on safety and ethics, direction, methods, interpretation, implications and dissemination.
About the Lived Experience Advisory Group
We are a group of people with lived experience of abuse and trauma, bringing diverse perspectives in relation to age, identity, demographics and experience of mental health services and seeking help with trauma. We're facilitated by Jane and Roz from Survivors Voices, and Angie from Service User Research Enterprise (SURE), and work to the principles in the Survivors' Voices Survivor Charter and the Survivor Research Involvement Ladder.
We meet regularly with members of the research team, contributing to all aspects of the study. This includes:
- making sure the study approach is safe and ethical and trauma-informed
- helping to ensure the voice of lived experience guides the direction of the study
- helping the research team to develop trauma-informed methods
- making sense of the findings from the research, and
- helping to write up and share the findings with others.
Sophie Olson is a CSA survivor, activist, writer and founder of The Flying Child: leading conversations about Child Sexual Abuse through survivor-led training, campaigning and support. The Flying Child Project brings lived experience into the heart of professional settings, providing training in Education, Social Work and Healthcare. Sophie’s work aims to challenge the societal culture of silence around CSA.
She wanted to become involved with the project because of first-hand experience in the mental health system that was unable to support her with childhood trauma. Her story was covered by Radio 4 in the Lights Out documentary The Last Taboo. She is a mother of four children and in her spare time, likes to crochet.
Nell is an actor, writer, theatre-maker and facilitator, and the founder of Response Ability Theatre (RAT): a company that seeks to represent and support people whose lives have been derailed by trauma. She is currently an associate artist with Arts and Homelessness International, CRIPtic Arts, and the Museum of Homelessness. She was attracted to this project to understand more closely the process of academic research, and the areas in which creativity and survivor voice can (and must!) fit in the study of trauma.Nell's ideal world lies somewhere between the imaginations of Charles Schulz and Bill Watterson. She loves forests, and aspires to live in a shack helping weary travelers on mythical quests, when she gets old and ragged enough to pull it off.
Susanna is a survivor of child sex abuse (CSA). Her own debilitating anxiety led her to meditation and yoga in her early 20s. She now delivers Mindfulness Based Stress Reduction (MBSR), and is a yoga teacher. She is currently working towards her diploma as a Person-Centred Counsellor at The Norwich Centre. These effective self-care practices enabled her to live a full and rewarding life, while managing her internal landscape of fear. It was not until she turned 50 that she discovered the origin of what she now understands as ‘trauma distress’ caused by the dissociated and silenced memories of CSA. She has become an activist and educator around CSA and now has a doctorate in applied psychology having researched CSA survivors’ experiences of trust and trustworthiness. She is an educator in trauma-informed practice at the University for clinical psychology students, and for the charity Survivors’ Voices.
Funding Body: National Institute for Health Research (NIHR)
Period: November 2022 - October 2023