Blog written by parent Charmian Johnson…
Conference time again!
The annual conference and exhibition for the Child Brain Injury Trust takes place towards the end of March and it’s a firm fixture in my diary. As soon as the date is announced I apply for a parent place – they are very generously subsidised – and the 2014 conference was my fourth. This year there was a change of venue from Birmingham to Manchester – the Eithad Stadium, home to Manchester City Football Club – which was just a quick ride from the City centre on the very impressive Metrolink system.
The theme of this year’s conference was ‘The End of the Rainbow – where do we go next? – a question facing families affected by brain injury as various changes in policy and practice come into effect. The Children and Families Bill, soon to be made law, will bring together health, education and social care into one package: it sounds like sensible joined-up thinking , but how will it actually impact on the lives of children with additional health and/or educational needs, in particular those with brain injuries?
After a welcome from Lisa Turan, the Chief Executive Officer of the Child Brain Injury Trust, the first session from Dr Rob Forsyth, Senior Lecturer and Consultant in Paediatric Neurology in Newcastle upon Tyne, provided a useful overview of ABI and how it affects children and the family. Medical advances over the last twenty years have meant that far more children now survive brain injury and make a good physical recovery. But the long-term outcomes for their cognitive development is much more uncertain and these children can face considerable problems with attention, new learning, executive function and processing speed – neuroplasticity can only go so far it seems.
And yet the right rehabilitation can make a huge difference as we heard from the next speaker, Jan Rock. In 2010 Jan’s son Callum fell 70ft from a cliff whilst rock climbing with his father. He had multiple injuries including a severe TBI. A team of surgeons battled for hours to save his life and remarkably he pulled through. But after he emerged from the controlled coma, Callum only had one hour a day of physio. Jan and her husband read about the work of Dr Jonathan Fellus, one of the foremost experts on ABI in the USA. His work with wounded soldiers has shown that long hours of rehab are necessary to ensure the patient makes the best possible progress – the targets have to be more than just bathing, dressing and feeding. Jan brought Callum home as soon as possible and using her professional project management skills she created an intensive rehab programme for him, providing a 50/50 balance between sleep and constant exercise or stimulation. Callum’s progress was astonishing and two years later he was one of those carrying the Olympic torch!
Another truly inspirational session followed when Lauren Stacey, now 16, told the moving story of her ABI and how she has learnt to cope with the challenges it brings. Lauren sustained her ABI in a car accident – an accident that tragically killed her mother (their car was hit by a fire-engine attending what turned out to be a hoax call). Supported by her case worker Janet Taylor, Lauren’s eloquent and candid account of life with ABI was very moving – her determination to be independent is tempered by the painful realisation that she will always need support. I wasn’t the only one wiping away a tear at the end of her talk.
Next came the coffee break and a chance to complete my tour of the exhibition stands. This year delegates were provided with an Exhibition Bingo card – for every stand you visited you were given a sticker. Completed cards were put in a draw to win a mini i-pad: everyone was keenly gathering their stickers and it certainly made you go round the stands in a methodical way! As usual I gathered a huge amount of useful information and was laden down with brochures and free pens!
The next session centred on facts and figures which tell a revealing story about Brain Injury. Professor Fiona Lecky , whose research has focused on improving trauma care and is Chair of the current NICE Head Injury Guideline Revisions, told us that since 1989 there has been a 90% improvement in the number of children surviving head injury. 66% of severely injured children are boys and 25% are infants under the age of one. Not surprisingly road traffic accidents are the most common cause, followed by falls. Interestingly 2/3 of severe injuries occur between May and October. Professor Alison Kemp from Cardiff University had some more facts on falls: most falls take place from a standing or running position, followed by falling downstairs. But the most severe injuries occurred when an infant falls from the carer’s arms and several factors come into play here – such as the height of the fall, the surface of the impact and the age of the child. The final speaker in this session, Dr Mark Lyttle, Consultant in Paediatric Emergency Medicine at Bristol Royal Hospital for Children outlined the challenge facing medics to do the right test on the right patient at the right time following a head injury. The NICE guidelines for head injury have been updated and CT scans doubled between 1995 and 2005. Now 50% of mild TBIs are scanned which has reduced the number of brain injuries not being detected, but patients also need more information on discharge – ie, what symptoms should they be looking out for?