During a visit to NAVIGO, a social enterprise in Grimsby, I met a service user, David, who had severe learning disabilities and had spent years in locked rehabilitation services far from family and friends. When NAVIGO took responsibility for ‘out of area’ patients, it brought David back to its own local services and asked him what he really wanted to do. David hadn’t been asked this before. He said he would like to visit his favourite football team, so staff booked train tickets and they went on a tour of the stadium.
How is it possible that somebody can spend many years in institutional care, at a cost of hundreds of thousands of pounds each year, without being asked what they want to do in life, without being asked about their personal hopes and aspirations for the future? It’s an astonishing omission. The answer, I think, lies in the particular direction that health and care services have taken over a number of decades.
If you ask clinicians in NHS mental health services what outcomes they focus on for their patients, they are most likely to refer to managing the signs and symptoms of anxiety, depression or other mental health conditions. A range of questionnaires and frameworks have been developed to track how the severity of people’s conditions changes during treatment and how well they can manage in daily life.
If you ask a social worker, they are more likely to talk about developing the resources and capabilities that people need to recover from mental illness and live independent lives. For example, do people have a job or other form of meaningful activity, do they have safe and secure housing, and do they have a strong social network?
These are all vitally important things. Yet the mindset is problematic. Professionals tend to see people’s mental health challenges as generalisable problems amenable to generalisable solutions. Our research suggests that service users do the opposite, seeing mental illness not as a diagnosis that they share with other people, but a unique personal experience.
The King’s Fund’s recent paper on outcomes in mental health, commissioned by Janssen, argues that professionals need to take a broader perspective on the role of mental health services, focusing not just on clinical and technical matters, but also the humanitarian aspects of care: providing sanctuary, alleviating suffering, helping people to grieve, allowing people to recover voice and rekindling hope. It also makes the case for refocusing from the general to the individual, attending more closely to the needs and aspirations of individuals rather than generalised improvements in health and wellbeing.
In previous institutions, David had things done to him. Once he had received a medical diagnosis, he was a bottle on a production line. At NAVIGO, staff started with David, a unique human being rather than a mental health condition. They explored his understanding of his challenges and his aspirations for the future and worked from there. When I met David, he told me about how he was reducing cholesterol and managing his diabetes. He explained with pride that he was preparing for the first time to move into his own home.