Recently I attended a conference at the King’s Fund that focussed on transforming patient experience, particularly the experience of vulnerable patient groups.
To me, the day felt as much like a call to action as a celebration of good practice. Hearing from Catherine Carter, a mother with learning disabilities and Asperger’s, about the distressing experiences of parents with learning disabilities offered a stark reminder of how much stigma there still is around certain conditions.
She described a project to engage people with learning disabilities using maternity services. Through regional roadshows, they listened to what people with learning disabilities had to say, and produced a series of recommendations for policymakers and practitioners about how to improve maternity services. I liked their “ladder of power,” where they asked people to rank themselves and those involved in their care based on their level of power. The mothers and fathers rated themselves as having the least power, with social workers right at the top. The reason? “They take our babies away.”
There were other eye opening results, such as GP receptionists being perceived as more powerful than the GPs themselves because “they are the gatekeeper of whether you get an appointment or not.” This highlights the levels of fear that people with learning disabilities experience when engaging with the health and care “system”—and how important the role of all staff is in providing good care.
Parents with learning disabilities, speaking on films made by Healthtalk, described this sense of powerlessness and fear during pregnancy. What makes it worse is that health professionals sometimes fail to provide them with basic information, such as birthing options or antenatal classes. Rather than being treated with compassion and dignity, both mothers and fathers with learning disabilities often felt stigmatised and isolated at a time of extreme vulnerability. They described being on a ward with new mothers and their babies, after their own had been taken away to be fostered, with no support to manage this devastating loss.
Communication between staff and vulnerable patients was a theme that emerged time and time again during the conference. So it was heartening to end the session by hearing about the UK pilot of the “Always Events Programme,” supported by the Picker Institute.
Staff at Lancashire Care NHS Foundation Trust had identified discharge as a concern for people with learning disabilities who accessed their services. Using a methodology where patients and staff are equal collaborators, the team have been co-designing their service around the specific needs of its users, and coming up with their recommended “Always Events”—such as “use kind, respectful words” and “don’t rush or talk too fast.”
Many of the changes they have implemented may seem minor or even trivial—such as adding a photo of the patient’s clinician to their discharge letters—but they can make all the difference to the service users.
This co-design methodology is powerful and successful for several reasons: it fosters a strong sense of teamwork and collaboration between staff and service users; it improves not just patient experience, but patient safety and effectiveness as well; and most of the changes are easy to implement and relatively inexpensive, rather than systemic.
I know from my own experience that feeling vulnerable can be an inherent part of accessing health or social care. For both patients and families, it is crucial to feel listened to and understood. Co-design goes even further than just listening to create a compassionate patient-caregiver partnership—and that is central to improving patient experience and building an engaged and resilient workforce.
Patrick Cullen is communications manager at The Point of Care Foundation, a charity working to improve patients’ experience of care and to increase support for the staff who work with them.
Competing interests: The Point of Care Foundation was a partner organisation at the conference.