‘We need to stop treating pain and isolation with pain and isolation’

Only 16% of people who experience a combination of distressing issues, such as homelessness, mental ill health, drug or alcohol dependence, chronic poverty and offending, consider their quality of life to be good compared to over 70% of the general population.

While this is not a surprising statistic, it is a stark reminder of the inequalities faced by people facing severe and multiple disadvantage. It raises the question what makes life worth living? And what can be done to make sure everyone can have equal opportunities to lead a fulfilling life. Asking questions about quality of life also reminds us that people are not just a set of problems, and that what people who experience tough issues want from life is not different to what most of us want: “someone to love, somewhere to live, somewhere to work, and something to hope for”

On Monday 20th of April, we brought together a group of people with lived experience of those issues, as well as people who commission or provide relevant services to launch Hard Edges, The Lives Behind the Numbers, at the People’s History Museum in Manchester.

Stories about pain, isolation and incredible resilience

The event was marked by an overwhelming level of experience, rich in insight and stories. It began with a reflection on what makes life worth living, including inputs that draw on social theories and recent research, as as well as participants’ stories of their lived experience.

Working in small groups, participants with different perspectives and backgrounds shared their assumptions about the lives of people facing severe and multiple disadvantage, and how the surrounding systems and services are either supporting or failing them.

“Adults with severe and multiple disadvantage were children with severe and multiple disadvantage.” (Participant)

The challenges are many, and they were mostly familiar to everyone in the room. We heard stories about having to reach rock-bottom before being able to get support, about poor collaboration between different organisations, about people’s daily experiences of stigma, about the fact that 9-to-5 services don’t align to people’s realities. We heard about the importance of being supported through key life transitions – transitions from childhood to adulthood, transitions out of prison, transition from harmful relationships to being self-reliant.

“The system often traps people within it, and doesn’t help people to move on.” (Participant)

We also heard a lot about the importance of being listened to without judgement, and of valuing people’s whole stories: their histories, their unique perspectives, skills, strengths and vulnerabilities.

“Sometimes we have a tendency as service providers to look at what’s gone wrong with people rather than what their assets are.” (Participant)

Some disarmingly simple questions

Laying bare all of our assumptions led the group to questions that still felt unanswered, and that will guide our research in the next few months. Some of those questions were disarmingly simple, such as:

• What do people want, not just from services, but in life?
• What are people good at? What are their skills and ‘superpowers’?
• Which relationships matter to people?
• What helps to build self-esteem and confidence?

One of the most insightful comments made was that, “we assume there is a system that is meant to support people with severe and multiple disadvantage”. But the word system implies something that has worked coherently to achieve an agreed outcome. However, the reality is that the system is a patchwork of, well, patches. Some of them solve specific problems, which others might exacerbate. Some are public services, with limited resources and competing priorities, while others are growth-seeking enterprises that exist on an economy of need. Housing providers, employment support, advisers and health workers are forever having to balance the needs of individuals with targets and expectations set from above. Collaboration between providers around the needs and aspirations of individuals is the exception rather than the norm.

“We need to stop treating pain and isolation with pain and isolation.”  (Participant)

A space for positivity and solutions

The strongest message from the group, however, was that the challenges we heard have been voiced for too long. There is a real passion for things to change, and a desire for having the space to explore solutions. As one of the participants put it, what will make this project worth it would be “to actually see real change happen in my lifetime.”