Organiser and Community Support Officer Christine Mather tells us all about it and the added value of working collaboratively with other expert support organisations.
“On Wednesday we held another online event for parents (and one grandparent) whose children have acquired brain injury as a result of meningitis. We titled the event “Understanding and Living with Acquired Brain Injury in Children”.
“I knew this would be a great subject to cover and be well received as it’s such a big part of our work in the Meningitis Now support team, supporting families whose children have this after-effect.
Minefield to navigate
“It can be a minefield for them to navigate support in schools, to understand their child and also to get a proper diagnosis and know who to seek out through the many-layered NHS network.
“We had eight participants on the day with four of them being new to the Meningitis Now support team.
“As this is such a specialist area where we do not have the in-depth knowledge in house we were delighted to be joined by Louise Wilkinson, who is Head of Learning and Information at the charity The Child Brain Injury Trust.
“Louise’s presentation was so informative for participants and our staff who helped with the event too. It was plain speaking, no big words or medical terms (which can be baffling). It covered how meningitis can affect brain development, why children with acquired brain injury have the issues they have and how to attempt to receive the correct diagnosis for acquired brain injury (and she did admit this can be extremely hard).
“She also covered the correct referral route and what parents should be asking for from their GPs.
“Louise spoke about a child’s behaviour with acquired brain injury and why bad behaviour might be happening (basically to look behind the behaviour) and also why a child might be fatigued (an over-worked brain trying to keep up!)."
You can watch Louise’s presentation here (Louise has asked us to point out she uses the expression ‘scaffolding’ at one point instead of ‘concrete buttress’):
Feedback on Louise's presentation and the overall event was excellent and very positive, with participants telling us:
“I found it informative, easy to follow and clearly explained. It described my child’s behaviours and needs, helped me understand just how hard his brain is trying and confirmed to me what I’d been trying to research by myself.”
“I found Louise's presentation extremely informative and interesting. She explained things in a way that was easy to understand, I particularly liked the analogies that she used, it helped me to understand from my son's perspective. Many of the things she said resonated with me with regards to my son and his 'symptoms’.”
“A huge thank you to all at Meningitis Now and Louise for an extremely informative session. A lot to digest but I'm so pleased that I was given the opportunity to attend. Thank you again.”
Value of working collaboratively
Chris continued, “Following the presentation, an informal group discussion was held where all participants joined in and shared their stories and the problems they were having.
“One thing that did come across strongly to me, was that a lot of the parents were grieving for the child they had before meningitis struck. They spoke movingly about how their child had changed, how they were hitting all their milestones before and then meningitis came along and that changed. And, what an immense struggle it was to get the right support for their child in school and also clinically too.
“Overall it was another fabulous event in our Keep Connected series, and very much needed by the families we support. And it showed how much more can be achieved when we work collaboratively with partners and share our knowledge and insights. We’re so grateful to Louise for her invaluable contribution and sharing her expertise.”
Louise added: “It was an honour to be asked to present to the Meningitis Now parent support group. This is a superb example of the collaborative approach that both organisations have enjoyed with each other over many years, pulling together to help families affected by childhood ABI due to meningitis – such a pleasure to work so constructively with a wonderful charity.”
Read more about our Keep Connected events.