Mind the Gap: Navigating Social Care after Acquired brain Injury

Thank you everyone for coming today. I'm going to give you an overview of various areas associated with the gaps in social care and the difficulties that exist for people trying to navigate social care after brain injury.

I will start with a potted history of research studies that my colleagues and I have conducted looking at the experiences of individuals and family members interacting with social care after a brain injury. Then, I will talk about the family experience of what happens when social work goes wrong. I come from a lived experience perspective of having a family member who has had a brain injury, so I will be sharing some of that personal experience as well. Finally, I will look at a piece of work I did with Mark Holloway, where we reviewed safeguarding adults reviews specifically around brain injury to try and understand some of the difficulties that arise when social care does not provide the support that people need.

To start, I will introduce some primary research studies conducted over the last few years. One preliminary survey study, published in 2019, looked at the various social care and community services people encountered after being discharged from the hospital following a brain injury. This included contact with the police, probation, employment and benefits agencies, GPs, and rehabilitation services. When we asked individuals to rate which of these organizations they found useful, solicitors, GPs, and general hospital services were rated most highly. Unfortunately, social services and social work were frequently cited by individuals as being among the worst in terms of understanding and managing their needs appropriately.

We followed this up with interviews, and the key theme that emerged was a lack of knowledge and understanding of acquired brain injury within social care settings. Participants noted that where there was a physical disability, it seemed easier to get access to care, whereas individuals experiencing cognitive, emotional, or behavioral problems—which are often hidden disabilities—struggled significantly. Many felt there was a lack of empathy; they didn't necessarily expect organizations to have all the answers, but they wanted to feel heard. There was also a strong emphasis on the need for better safeguarding, as services often failed to understand the level of risk associated with cognitive or executive impairments.

This led to a study with the British Association of Brain Injury Case Managers looking at the Mental Capacity Act. Case managers consistently reported disagreements with statutory services, where professionals often ignored their assessments that clients lacked the capacity to make certain decisions. There is a misunderstanding regarding 'unwise decisions'; while the legislation states that making an unwise decision does not mean someone lacks capacity, these decisions should be looked at in context. If someone is repeatedly making unwise decisions, it may indicate a need for a formal mental capacity assessment, which was not happening routinely.

I am currently working on the 'Heads Together' project, funded by the National Institute for Health and Care Research. We are looking at what social workers know about brain injury and the barriers to gaining better insight. What we are finding is a woeful lack of pre-qualification training in this area, and the specialist brain injury social worker roles that were common 10 to 15 years ago have largely disappeared.

My personal story involves my brother, who had a head injury at 21 following a serious road traffic accident. While his hospital care was excellent, we discovered a sheer lack of service upon discharge. He was viewed as responsible for himself because he could physically wash and dress, so he received no community rehabilitation. He spiraled into substance abuse, homelessness, and eventually took his own life. As a family, we were never properly informed or involved. After his death, his case was upgraded to a Safeguarding Adults Review. It highlighted that despite several safeguarding alerts over 18 months, there was a failure to collaborate or see the bigger picture of his spiraling health.

In summary, my research with Mark Holloway found that this is not an isolated case. We found that safeguarding issues consistently involve a lack of understanding of brain injury, a lack of multidisciplinary team working, and a failure to engage family members who have crucial insight into the individual's baseline. We must move away from the idea that protectionism and empowerment are on opposite ends of a continuum; we can put protection in place to empower an individual. We also need to address the unconscious bias where people who present with difficulties like slurring are assumed to have drug problems rather than a brain injury. We must ask the right questions to understand what is truly happening.