Toolkit uses patient experience to improve mental health services

The following article by Neil Springham and Ami Woods was published in the Guardian Professional on Tuesday, 7 January 2014.

Neil Springham is Head of Arts Therapies and ResearchNet co-ordinator at the trust. Ami Woods is an art therapist and ResearchNet member at the trust. The experience-based co-design toolkit was originally launched by the King's Fund in 2011. A revised version, incorporating user feedback and the addition of four case studies, was launched in November 2013. 

Neil Springham and Ami Woods
Neil Springham and Ami Woods

The toolkit captures the experiences of patients, carers and staff through discussion, observation and filmed interviews.

Staff at Oxleas NHS foundation trust found that communication had a powerful effect on patient experience of admissions. 

Mental health acute wards are frightening for patients and stressful for staff.

Patients feel at their worst and are often terrified about what is happening. Staff must process a high volume of admissions, many of which come with additional complications relating to factors such as housing or benefits.

For these reasons, the patient experience team at Oxleas NHS foundation trust decided to take a new approach to these pressures. The experience-based co-design (EBCD) toolkit is a distinctive approach, which captures the experiences of patients, carers and staff through discussion, observation and filmed interviews; then brings them together to explore findings and to work in small groups to feed this into service improvement.

The EBCD toolkit has been used effectively in physical health, but we found no evidence of its use in mental health when we began - and we have since linked up with others using it in mental health whose experiences mirror our own.

The approach is distinctive because it enables patients and service users to tell their own stories deliberatively. We used EBCD for two years on Betts ward, an acute mental health ward in Bromley, and have found it very powerful. However, because of its high impact, we needed to adapt the toolkit and tailor it to mental health.

For example, we found that after talking without preparation participants were initially unable to sleep because they had recalled and relived the worst moments of their lives. It became clear that the experience of acute mental illness itself, along with the fear , stigma and shame still attached to sufferers, meant we were asking a lot of participants. So we built in additional support for service users, to slow down recall and allow users to control the process. We did this through our ResearchNet group, where service users, carers and providers work collaboratively to improve services. 

The result of our EBCD work was striking. In terms of assessing patient experience, there is nothing that can match people describing what they went through directly to camera. Their descriptions of what worked and why gave us information impossible to get any other way.

It became clear that it is not procedural approaches (such as diagnosis or care plan), which set the tone of an admission, but human contact with staff. Even the briefest of human communication had a disproportionately powerful and positive effect if it was based on an empathetic approach. We found this even when patients felt they were suffering delusions or were closed down and uncommunicative.  

At the viewing, staff had tears in their eyes, saying the videos put them in touch with what they came into nursing for. Rather than being a criticism of nursing, the videos were a boost for staff, letting them know that they as people were the most important factor for service users in an acute state of distress.

Yet the effect of the films was not limited to ward staff. Senior managers also received reliable data about what patients experience and value. They were then able to use those descriptions to redesign processes around the ward and to bring that human contact to the foreground, on an equal footing with better-established clinical and administrative priorities. The ward was able to build its procedures around the emotional touch points identified by EBCD and has managed to reduce its complaints by 80% over a 14-month period.

Perhaps most surprising was the effect on our ResearchNet group. It was not our intention to be therapeutic. Yet, while the process could be stressful at times, EBCD helped users structure their lived experience and seemed to reverse the effect of stigma attached to it.

It was hard, but people feel very proud of the personal experience represented on film because of the positive effects they have had.