Case study 1: Oxleas Mental Health Trust

In 2012, Oxleas NHS Mental Health Trust used an experience-based co-design approach to make improvements to its mental health inpatient service. The results were impressive, with complaints reduced by 80 per cent over 14 months. Here, the people who led the project explain how they adapted EBCD to their context and highlight what they have learnt.

Being admitted to hospital is often a stressful experience. But being admitted to a mental health ward can be particularly distressing. Ami Woods, an art therapist and former mental health inpatient explains: 'It's just, basically, you’re at your most vulnerable, you're feeling completely exposed and you're getting everything you don't really need, which actually makes you worse.' Unfortunately, this experience is widely recognised across the sector.

Aware of these challenges, the senior management and staff at Oxleas NHS Mental Health Trust wanted to make improvements to the ward, but initial approaches had produced disappointing results. Then they came across experience-based co-design, and it seemed like the solution. 'We wanted to find a way of closing the circle – asking for patient experiences but then delivering that information back in a way that led to positive, concrete changes,' explains art therapist Neil Springham, who led the project. 'Methods such as surveys often engage the head but not the heart. I thought that using films, as EBCD does, could rekindle people's empathy.'

Neil recruited participants from ResearchNet, a service-user group that he had already established. Ami and other members of the ResearchNet team co-managed the entire process, including filming, managing consent and running events, supported by Neil and his colleagues. He is emphatic that working within an existing group such as ResearchNet was essential to ensure that users had the trust, reassurance and support they needed.

Running EBCD in a mental health setting raised some unique challenges. The process required patients to occasionally meet someone who had made them feel uncomfortable in the past, so they needed preparation, support and self-control to focus on co-design rather than recriminations. Many worried about confidentiality and stigma, or how speaking out might affect their experience if they were readmitted. For staff too, the experience was potentially exposing. Senior management played a vital role in allaying scepticism and emphasising that this was a design project rather than an investigation.

The universal theme that emerged through the films was the need for more human exchanges between staff and patients – especially in particular situations, such as admission. When patients were first admitted, the staff experience was of being extremely busy, while the user experience was of waiting, and feeling highly anxious. 'We saw that listening to patients' reflections after admission could make the experience far better – for staff and patients alike,' says Neil.

The process had a strong impact on staff and they changed their accelerated triage system to a model of care that was more aligned to service users' needs, as identified through EBCD. Feedback from daily groups on the ward, based on the emotional touchpoints, was linked back to staff supervision and became part of the primary tasks of the ward. Along with the reduction in complaints, the Care Quality Commission highly commended the project. The trust hopes to see shorter stays and fewer readmissions thanks to more effective treatment and less traumatic patient experience.

An unexpected benefit was the huge therapeutic impact on the people who took part. 'It's been a really hard, hard project,' says Ami. 'But it's been very empowering for people. Usually you keep this stuff quiet – you don’t tell anybody. This turned all that on its head and said "You can make a difference".'

Learning points

  • Mental health inpatients are uniquely vulnerable within the EBCD process because of the unique features of these services, so it is essential to adapt the process in order to reassure and support them.
  • Recruit patients from existing, well-established support groups or put that support in place.
  • Allow plenty of time to build trust before you get started. Oxleas met with patients for six months before they felt it was appropriate to start EBCD.
  • Ensure buy-in from senior management, to reassure patients and staff.
  • If handled correctly, positive outcomes may include fewer complaints, shorter inpatient stays, fewer readmissions and a sense of empowerment for patients who have taken part in the process.

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