An estimated 1.3 million people are living with the effects of acquired brain injury in the UK - that's one person sustaining a brain injury every 90 seconds. Despite this, very few people have heard of acquired brain injury and even fewer understand the challenges that it can pose for survivors.
This lack of understanding creates barriers between brain injury survivors and their communities, preventing people from accessing the support and resources on their doorstep. We are Headway Devon and we want to share our knowledge of acquired brain injury so that survivors and communities can thrive together.
What is acquired brain injury
Acquired brain injury has many causes from head injuries sustained in car accidents, assaults and falls, to illnesses and conditions such as stroke, meningitis and brain tumour. Survivors can find themselves facing a future of complex physical, cognitive and emotional disabilities, leaving them unable to return to the lives they led before. Every injury is different but effects can include paralysis, sensory impairment, epilepsy, poor memory, difficulties in processing information, personality change, mood swings, depression and anxiety.
People may struggle to return to work, manage their homes and continue their social relationships. People can very quickly become isolated and loose touch with the communities that surround them.
What's more, acquired brain injury can strike at any time of life - in fact, one of the most affected age groups is men from age 16-25. This can leave people facing a long and frightening future with life-changing effects.
Why is this project needed?
When people do work up the courage to try to engage with their surroundings, they can often experience set-backs due to lack of understanding about the difficulties caused by their injury. Behaviours can be misunderstood as antisocial or threatening - people with balance problems may be mistaken for being drunk; people with hearing problems who speak loudly may be taken for being aggressive; people who take time to respond to questions may be seen as uncooperative.
“If I look edgy and suspicious in a shop doorway, it could mean I'm trying to get my head round noise, lights, crowds, choices and over stimulation. It does not mean I'm thinking of shoplifting and need to be given more to worry about when staff look at me or follow me. I wish people could see my struggle when I'm getting over stimulated and understand how hard it is." - a brain injury survivor
Because of the huge numbers of people that it affects, it is likely that there is not a town or village in the country that will be untouched by acquired brain injury. Across the country people will be struggling alone behind locked doors, too anxious to try to be a part of the world that is on their doorstep.
The situation is exacerbated in Devon - one of the most sparsely populated areas of the UK. People are spread wide in towns and villages across a vast region, while support services are concentrated in the higher population areas like Exeter and Torquay. This can leave many brain injury survivors a long way from any formal support, and lacking the confidence to engage with the more informal (but incredibly valuable) support structures available in their locality.
What do we want to achieve?
Our aim is to support people with acquired brain injuries to enjoy happy and fulfilling futures. The people that we work with have a lot to contribute to society, but we need to provide education and support to provide environments where people can flourish.
Our Community Brain Injury Ambassadors project seeks to make the most of the existing resources, networks and relationships within Devon's communities. Our communities can be the most welcoming and supportive places, but only if we equip them with the knowledge and resources that they need to understand the challenges that people with acquired brain injury face.
Headway Devon would like to educate and up-skill our communities so that they feel confident in dealing with people with brain injuries and are able to respond appropriately and supportively to neighbours facing hidden challenges. We want to create a county where no individual with an acquired brain injury feels like a prisoner in their own home.
This project will see us recruiting an "Ambassadors Lead." This individual's role will be to educate individuals and communities in acquired brain injury and register them as Brain Injury Ambassadors. There will be two types of Ambassadors - Community Ambassadors who may be central figures in communities (e.g. councillors, shop/post office managers, pub landlords, village coordinators, WI presidents) and Survivor Ambassadors who will be people with acquired brain injuries who are able to continue and expand the project's work in their own areas.
Why Headway Devon?
We are the only local charity dedicated to rebuidling life after acquired brain injury. We have over 20 years of experience in the local area and have grown and evolved through the communities that we support. We are already supporting 200 people across the county every week so we have the knowledge, connections and passion to make this project work.