National Trauma Transformation Programme: Trauma-Informed Substance Use Pathfinders – Learning Report

Power sharing with people with lived experience of trauma and addictions

The development of trauma-informed service must be done with input and influence from those with lived experience of trauma as they best understand what aspects of services are supportive and which may (re)traumatise them. Involvement should be sought from those who have experience of trauma and more specifically those who have experience of trauma and who have used the service(s) under consideration.

Involvement of people with lived experience should be both safe and meaningful and should happen proactively across all service areas and aspects of delivery. Embedding such engagement and coproduction will help address power differentials and ensure services address needs.

Challenges in the Pathfinder areas

Both pathfinder areas had limited existing structures in place to collaboratively work with people with lived experience of trauma and for them to meaningfully be involved in decision making towards service design and delivery. Prior to COVID, more structures were in place which could have acted as a suitable base for the further development of the relationships needed to engage with people with lived experience.

Barriers to creating power sharing relationships with people with lived experience of trauma and engaging them in the pathfinder project included lack of access to suitable rooms and facilities, the time constraints of the pathfinder project, as well as concerns raised by people with lived experience in relation to confidentiality and anonymity (especially on the islands).

There was some evidence staff members involved in the pathfinder project had started to feel more able to disclose their own personal trauma backgrounds and use their experiences to input to the TI Practice implementation plans. There was also evidence of increased recruitment of people with lived experience into peer support roles over the time period of the pathfinder, however this was limited to Health Care Support Worker roles or similar. There were multiple challenges associated with this recruitment, including having to use existing NHS job descriptions and difficulties with staff retention when in post.

Enablers in the Pathfinder areas

In one pathfinder area, peer support groups run and facilitated by an Alcohol and Drugs Partnership (ADP) peer support co-ordinator were accessed to ensure people with lived experience of trauma were able to attend and partake in the TI lens events, and to be involved in some of the implementation activities drafted into the implementation plan. Due to the limited time of the pathfinder projects, it is hoped these relationships will continue to develop and be further expanded to ensure this co-production becomes more sustainable and integrated into service operation. Parallel work was ongoing within one pathfinder to develop community hubs to extend the psycho-social aspects of services and localised delivery. These hubs will also provide an opportunity to improve mechanisms for feedback and power sharing with those who had experience trauma.

To maximise engagement with the peer support group, the pathfinder lead met the group several times online to build rapport and start to develop a positive working relationship. This included understanding how they wanted to be involved in the process and ensuring any concerns they had were addressed and discussed to maximise the trauma-informed principles in the process. They were also re-imbursed for providing their expert knowledge throughout the process, in the form of voucher incentives to recognise their time, energy and input (to help address this inherent power differential).

The value of contributions from people with lived experience of trauma in the TI lens event (where they could be included) was apparent and led to an improved implementation plan, in comparison with those where engagement had not been possible. In the area where this was feasible, people with lived experience explained they did not feel the service viewed them as people (more for their diagnosis and/or the medical treatment they required). They also did not understand what they should be receiving from services, and the timing of various support. As a result of this, two documents were co-produced with these representatives. The ‘This is me’ document and a communications leaflet. These are further explained in the service and service design section of this report.

Pathfinder Recommendations relating to power sharing with people with lived experience of trauma and addictions

• Planning for power sharing with people with lived experience should happen in the early stages of implementation to ensure people who use the services are included in the process from beginning to end in a meaningful way.
• Services should consider setting up a service user group, an advisory group from people further along in their recovery journey, or potentially engaging with people with lived experience from existing psychosocial groups run either within the service or with third sector colleagues. It may be helpful if the service drafts guidelines (with input from people with lived experience) on their plan to power share and meaningfully ensure they are included in the process. Service should also consider whether they have appropriate facilities and spaces that allow engagement of those with lived experience.
• An additional way to facilitate power sharing is ensuring more people with lived experience of trauma are recruited into roles throughout the organisation. Currently the focus tends to be more on recruiting peer supporters than other roles. This is a move forward; however, these positions need to be carefully thought out, planned, use appropriate job descriptions, and put guidance in place about ensuring working environments are sufficiently emotionally safe. Examples might include increased access to areas to regulate emotions; individual health and wellbeing plans; training around wellbeing; and working within a culture which priorities staff health and wellbeing. For the latter, buy in from HR is important.