Can Do Health & Care - NHS Uncomfortable Truths Report

Part 1: WHY as system leaders we need to address culture to improve outcomes | 29 “People never forget how you have made them feel.” Most marginalised communities are not asking for special treatment, they are asking for equitable service. The sad thing is that you are at your most vulnerable when you are going to healthcare services. One of the signature things about marginalised communities is that we are not very confident in challenging authority, so we take it on the chin, and that goes on for a very, very long time. One of the people I worked with did not want to engage with the NHS at all because of how he was treated, no one talked to him and there was no connection between his GP and social services, so we supported him to make that happen. I went back to see him and wrote that unless things changed something worse would happen; a couple of weeks ago he was found deceased at home. Marginalised communities and people who appear to be vulnerable just want to be believed, they want to be listened to. We hear that nobody comes to work to be prejudiced, but we all come to work with our stereotypes and those things influence the kind of service we give to people. Also, people in vulnerable situations require continuity, they talk about their very personal experiences and don’t want to keep repeating that to every new person. “Acts of rebellion are going to be the only way forward.” “My hospital pays people for patient involvement, but not involvement in research. For people in low paid work with small amounts of time it is harder for them to access research participation.” “Data should be a catalyst to provoke further questions and trigger us to delve into the human stories and experiences to understand the story and what to do.” “Are we really using things like the LeDeR [learning from deaths of people with learning disabilities and autism] process to understand what we can do to stop people with Learning Disabilities dying on average 20-25 years younger than wider population? LeDeR themes show a lack of education/awareness for staff, poor communication between organisations, patients, families/carers not being listened to.” “Everyone thrives, if they work/volunteer/study in an inclusive, accessible and learning environment/culture; how well do we know our own environments/cultures?” “How to engender trust in clinical research processes among groups who may be underrepresented as a result of mistrust caused by historical unethical practices?”