Why It Matters
Recently, a patient at East London NHS Foundation Trust (ELFT) had a problem: it was taking too long to receive his medications from the pharmacy. For someone with a mental condition, delayed medication can lead to side effects or can negatively impact how they live their lives. Faced with a similar situation, some of us might lodge a complaint with a pharmacist or a doctor. But this patient didn’t stop there. He started and led a quality improvement (QI) project, working with a multidisciplinary team including pharmacists at ELFT. Their goal is to develop a better process so that he — and other patients — can get the medications they need in a timely manner.
Having patients initiate improvement projects may seem surprising, but to the staff at ELFT, it makes perfect sense. ELFT provides mental health and community services to a diverse population from over 100 community and inpatient sites. Patients and people who support them — who ELFT refer to respectively as “service users” and “carers” to promote equal partnership — have been deeply engaged in ELFT improvement work for a long time. Over the last decade, their involvement has become more structured, with the establishment of the “People Participation” department. This happened at around the same time that ELFT began to develop a culture of continuous quality improvement.
Service users and carers are now involved at every level of the organisation. They serve on the Board; support recruitment, including having an equal role on all interview panels; deliver training to all disciplines of staff, audit services through the service user-led accreditation service; and support and lead QI work across the Trust. “Their contributions can range from being members of a project team to initiating QI projects,” said Katherine Brittin, MPH, Associate Director at ELFT. “All of our work is about how we support service users to get involved to get the best from our services and for us to respond to what matters to them.”
For people interested in getting involved in improving the areas in which they receive services, ELFT offers several training opportunities. A first step is the Introduction to QI for Service Users and Carers. After completing this introductory training, they are invited to join a one-day course called Pocket QI to learn the fundamentals of QI methods.
Service users and carers who want to develop the skills to lead improvement work may then choose to join ELFT’s Improvement Leaders Program, in which they work on a specific improvement project over a six-month period. ELFT also offers the Improvement Coaching Program to train for the role of QI coach with lived experience. Currently, there are five service users who coach QI teams.
Service users have been part of some of ELFT’s most innovative and groundbreaking QI work. In one unit, for example, racially motivated abuse by some service users made it difficult for staff to provide the best care they could. The staff decided to start a QI project that was co-produced with service users, first to monitor the racist incidents using a data collection tool called safety cross and then to test different ideas, such as having a race relations representative and a service user design a survey to generate discussions around racism. Eventually, together they were able to reduce the number of racist incidents on that ward by 92 percent. “It’s a powerful example of what’s possible when you have a method to do very sensitive work,” said Brittin. “Service users and staff worked together, monitored the situation, and tested different ideas to make that change. It was very courageous.”
For the most part, co-production has gone smoothly, but occasionally staff have wanted to “get their house in order” before showing their vulnerabilities to service users. Understandably, Brittin explained, staff sometimes worry service users “may think less of them because everything isn’t perfect.” On those occasions, Brittin encourages staff to be brave and curious and asks the staff, “How else are you going to improve? What’s your alternative and who will you involve if not those who receive your services?” Ultimately, the staff and service users understand that improvement work is challenging for all involved.
Brittin noted that improving health equity requires codesigning and coproducing care with service users. Deeply engaging with individuals from diverse populations is crucial. “How [else] do you design acceptable and accessible health care services for people of different demographics, cultures, or populations?” she asked.
Brittin offers the following tips to health systems that may be inspired by ELFT’s example:
- Identify staff who see the potential value of inviting patients to join their improvement teams. Their openness “can support a movement around improving service user involvement,” she said.
- Talk to service users. “Ask what would help them be involved,” Brittin suggested. Payment or other compensation may support and encourage involvement. ELFT pays all service users and carers for the participation and involvement work they do.
- Explore what emotional barriers might be in the way, including feeling intimidated or fearful of being ignored.
- Use basic QI principles. “Start with one service user. Start with one ward. Start with one area,” and learn as you go, Brittin advised.
- Ask service users, if willing, to tell their stories. It can serve as the first step to bringing service users into improvement work. It can also demonstrate to more skeptical staff members or leadership the importance of understanding more directly how service users experience care.
As Brittin sees it, health systems are missing opportunities if they do not provide service users with the opportunities and skills to meaningfully contribute to improvement. “As staff members, we can make assumptions about what needs improvement,” Brittin explained, “but we don’t actually know until we speak to those we serve.”
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