Supporting people with brain injuries through research and training

The exact number of people with a brain injury in the UK is not known but is estimated that over one million people are living with this debilitating condition. The reasons for many people being undiagnosed vary, but conditions and symptoms associated with a brain injury can remain hidden. Issues such as homelessness, mental illness and behavioural problems may also mask the fact that a person has a brain injury.

The research project called Heads Together, funded by National Institute for Health and Care Research (NIHR), is bringing together leading brain injury experts to help improve social workers’ knowledge of acquired brain injuries so they can understand safeguarding needs of people with brain injuries and their families.

Heads Together is led by Professor Andrew Bateman at the University of Essex, in collaboration with the University of Plymouth, The London School of Economics and Political Science (LSE), Head First, The Brain Injury Social Work Group (BISWG), Queen's University Belfast and leading brain injury charities. The project will help professionals support brain injury survivors more effectively.

The team have published their research and reviewed the current evidence base, which found the majority of social workers have not received training on acquired brain injuries and therefore are not best placed to understand the importance of matching services to their clients’ needs.

Akudo Amadiegwu, Lecturer in Social Work in the School of Allied and Public Health Professions at Canterbury Christ Church University, is part of the project and working on developing a range of educational resources to help raise awareness and support for people who have acquired brain injuries. The Social Work team at the University hosted Making Headway, a play that brought the lived experiences of brain injury to life, on World Social Work Day. There were two performances, the first for those with brain injury from Headway Canterbury and the second for students, lecturers and professionals.

Akudo is a trustee of the Brain Injury Social Work Group and has worked building local and international networks developing her career as a researcher. She has contributed to two UK Parliament Post Notes on Invisible Disabilities in education and employment and Innovation in adult social care and is encouraging students to explore research as a career option.

Former Social Work Lecturer Kate Mellor’s life changed dramatically in 2021 after experiencing a stroke. However, thanks to Heads Together, she is now helping others to raise awareness of the project.

She lay unconscious in her home for 18 hours, before being taken by air ambulance to the Royal Sussex County Hospital in Brighton.

“I dropped off the radar. My youngest daughter got into my house and found me. She rang for the ambulance straight away and told them that she’d worked with dying people as she’s trained as a healthcare assistant. I was exceedingly close to not being here.”

Kate was taken to a major trauma centre and spent nearly two weeks in intensive care, with no idea what had happened to her. She says the air ambulance crews were not expecting her to be alive by the time they arrived at the hospital.

An MRI scan found that Kate had had a stroke – a serious life-threatening medical condition that happens when the blood supply to part of the brain is cut off.

“It’s very bizarre,” she recalled. “All these things have been happening to you and you just don’t know. A lot of the time in the hospital was a blur but there are bits I remember.

“I remember waking up and faces would come and go and all I remember was thinking ‘am I in some really weird dream? My last memory is the night before – finishing a a student placement email at around 8pm. I was going to go to bed because I was exhausted and the next thing I know is I’m waking up in hospital.”

Her three-year recovery journey was helped by her getting involved with Heads Together, where Kate joined Headway’s online support groups to talk about their own experiences of brain injury.

“That turned out to be one of the best things,” she added. “Thinking ahead to the future and it was great. In December 2021 we had a message through the online group to say that Brighton and Hove local authority were trying to set up some training. They were looking for brain injury survivors or family members to share their experiences as part of four sessions. I attended a session with local social workers on improving care access.

Akudo also facilitated a session with Annie Ricketts, a brain injury survivor also part of the Heads Together Experts by Experience group.

“From the training sessions I joined the project as an expert by experience. I had spent a long time sitting on the sofa being angry and upset. I wanted my life to go back to normal. It’s not going to go away so what I needed to do was find a way forward. I’m fully aware that it’s there, I know the impact and the effects that I struggle with – particularly fatigue or sometimes trying to find my words. I’m definitely blunter these days.

“Work has always been a huge part of my identity, I was always really busy and fairly competitive, but for 15 months I couldn’t really do anything. Starting to get involved with training really helped and it started to rebuild my confidence and my self-esteem.”

Kate now works for Headway in a hospital liaison role and has since joined the board of trustees of the Brain Injury Social Work Group.

“It’s seizing the moment. The connections and the people you get to know are incredible. We just get on with our lives but we just don’t realise the prevalence. It could be an accident, a fall, a tumour, abuse. It can also be easily dismissed but brain injury can have a huge impact on people’s lives.

“This training is so important to continue to highlight brain injuries and the impact they have upon people's lives.”

Find out more about Heads Together and Headway.