Consultations involving mental health service users and healthcare managers are often difficult. Individuals with lived experience of mental health conditions may be less inclined to participate. This is partly due to mental health conditions frequently being accompanied by feelings of shame, to which a common response is withdrawal. Additionally, evidence from healthcare consultations suggests managers are often unsettled by interactions with mental health service users. The emotional stories of service users that detail anger, pain or humiliation can leave managers feeling upset, abused and wrongly attacked. Managers frequently respond by seeking to dismiss these stories as anecdotal, irrational or inappropriate contributions. Existing studies of interactions between mental health service users and managers do not adequately explain these reactions. My research suggests consultations with mental health service users may be affected by feelings of shame amongst healthcare managers.
In my research, I focused on the case of a consultative forum run by an NHS Clinical Commissioning Group based in the English Midlands. The forum provided an interesting case study as it consisted of individuals with lived experience of mental health conditions who were exploring ways of improving access to local services. Additionally, members of the forum adopted a narrative approach to collecting evidence and disseminating their recommendations. This included collecting lived experiences of local service users and fashioning them into a collective story on how to improve access to local mental health services. This narrative was then used to support the recommendations they presented to NHS managers. Over the course of a year I conducted interviews with the forum members and NHS managers. I also observed the meetings of the consultative forum and their presentations to local NHS managers.
Forum members expanded the range of mental health service users voices within the consultative process by collecting and presenting lived experiences from a diversity of service users. This included individuals from particularly disempowered groups such as the homeless, those with substance use disorders and individuals recently released from prison. The stories they told detailed difficult interactions with services that created painful emotions. Once such story was told by a recently released prisoner who we can call William. He relayed the following lived experience:
“My medications were well maintained in prison but out here it is a different story. I was released from prison with no prescription. The doctors…don’t want to know and won’t let me into the practice. The receptionist is rude to me…I get really angry…The pharmacies don’t help me…Security is called when I go to A&E…I am desperate…and want to go back to prison to get the help I need!”
William’s story movingly illustrates the human impact of a systemic failure to provide adequate care and access to basic treatments. Consultative forum members recognised the emotional impact of this story, variously describing it as ‘awful’, ‘terrible’ and ‘very poignant’. Forum members quoted this and other painful user stories in their report and presentation to local NHS managers. Previous research would suggest health service managers could be expected to dismiss William’s lived experience as anecdotal, irrational or an inappropriate contribution. After all it contains the feelings of humiliation, pain and despair that managers often find difficult to accept. Interestingly in this case, rather than feeling abused or wrongly attacked the local NHS managers accepted William’s story.
Evidence suggests that, at least in part, the reaction of managers was motivated by feelings of shame. One manager, who we can call Kate, noted when recalling William’s story: “it really stuck in my mind. It’s just absolutely tragic that somebody should feel that…they can get better support in prison than they can…in the real world”. Kate’s statement can be interpreted as involving feelings of shame as it implies a negative evaluation of herself as a manager. She appears to acknowledge that the service she was partly responsible for providing had failed to meet basic standards of care. Accordingly, William’s story, like those of other service users, appears to have produced feelings of inadequacy within management for their part in the failure of services. However, rather than acknowledging these feelings the managers reacted with avoidance, which is a typical response to shame. In my interviews, the local NHS managers expressed their reservations around the financial implications of the recommendations. Managers did not advance these concerns during their interaction with forum members. Rather management appeared to have withdrawn from discussions by accepting the forum’s recommendations. Through withdrawal managers were able to avoid difficult discussions about their part in the failure of services to meet basic standards. Forum members expressed their disappointment at the lack of a response as they had expected a robust discussion with management, particularly over the cost of implementing the recommendations.
My findings illustrate that service user lived experiences and storytelling approaches are essential aspects of consultations in healthcare settings. The narrative approach adopted by forum members lessened the tendency amongst mental health service users to avoid discussing their lived experiences. However, the findings also suggest the persistence of shame in consultations between those who access services and those who provide them. As William’s example implies, the emotional impact of painful stories can produce feelings of shame within management that encourage withdrawal from discussions. Further exploration of shame is central to creating consultative processes that improve interactions between the users and managers of mental health services.
Dr Stephen Williams, Research Fellow, The Shame and Medicine Project.
University of Birmingham
7th December 2022