The real journey of ABI

Our information officer, Eleanor Hunt, attended a conference at The Children’s Trust which aimed to educate health professionals and raise awareness around child brain injury.

This is what Eleanor had to say about The Real Journey of Aquired Brain Injury Conference, which was held for the first time on 27 November. 

The day began with tea, biscuits and networking. A wide range of professionals from a variety of organisations had attended, clearly keen to increase their understanding of brain injury in children and young people and to improve their own skills within their field.

Before settling down to hear the speakers, we were encouraged to look at the information which had been set up and focused on the different discipline of brain injury rehabilitation; physiotherapy, occupational therapy, and speech and language therapy. By chatting to the therapists, I got a real insight into their day-to-day work with the children. Everyone was very friendly and more than happy to talk about their role at The Children’s Trust. 

We then took our seats in the main hall and the conference began.

The main stars of the conference were Mark and Ryan. The conference was based around a sequence of short films in which Mark and his son, Ryan, talked about their ABI journey. Each section of the conference featured a part of their story. This worked well as each section flowed into the next, emphasising the idea that families really are on a journey with their child.
The first section was entitled the acute stage of acquired brain injury. This section focused on what happens straight after the accident or incident. In the film, Mark talked about Ryan’s accident which left him with a brain injury; how he received the news; Ryan’s time at a respiratory and neuro ward; and the care Ryan received from healthcare professions. The presentation then addressed how healthcare professionals could best help the families in that situation and how to act professionally, yet empathetically.

Next, ongoing care and rehabilitation for a young person with an ABI was addressed. Here, Mark spoke about Ryan’s stay at The Children’s Trust and what had specifically helped him and his family during this part of their journey. This included, feeling supported by the other parents who were in a similar situation and seeing Ryan improve over time.

The presentation provided professionals with advice about how to conduct themselves around a patient with an ABI. The two key points focused on consistency and the importance of not reinforcing negative behaviour. It was explained that this was hugely important in helping young people re-learn and understand acceptable behaviour. It also stressed the importance of not pushing the parents and understanding that they may still want to try and keep personal care boundaries.    

We were then split into groups and carried out an activity which encouraged us to think about goal setting, goal priority, and which people would be best to help out patients achieve their goals. This was beneficial as it highlighted the fact that a huge team of people is in fact necessary, ranging from friends and family to therapists to care staff.

After lunch and more networking, the final section focused on living with an ABI. Mark and Ryan told us about how, after leaving The Children’s Trust, they had to adapt not only their home but also their lifestyle in order to accommodate his current abilities. Although Ryan can still do the majority of things he used to be able to do, it now requires a lot more planning and assistance than it did before. 

The presentation then addressed the importance of early referral and the idea that most parents with have little to no experience of working with health or social care, meaning they will need help understanding the assessment process and how it sometimes moves slowly.

The conference ended with some final advice from Mark and Ryan and a few words of gratitude. Their story was very moving and it was easy to see how strong the bond between them had become.

Overall, I found the conference to be very informative and it was a great chance to meet people from a variety of different backgrounds, who all wanted to further their understanding of ABI in children and young people.

And as Ryan concluded: It’s a wrap.   You can read Mark and Ryan’s full story here

by Eleanor Hunt Eleanor Hunt the Information Officer   
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