As part of Family Voice Surrey, I have visited The Children's Trust in Tadworth a number of times as they kindly lend us a room for our meetings.
The Children's Trust is a national charity working with children with acquired brain injury, multiple disabilities and complex health needs. They have a 24 acre site in Surrey, but offer their services to children from across the UK. Their staff are dedicated experts in rehabilitation and support work.
An acquired brain injury may be very obvious to see when it is profound and accompanied by physical difficulties, or it may be an 'invisible disability' that may have stemmed from a long-ago trauma or illness, that is not diagnosed for years, leaving a child with no support. The Children's Trust helps those who need intensive levels of care but they realise that they have considerable expertise they can share at a wider level and so have developed a new online resource to do just that. Here, Ian Ray of The Children's Trust explains all about it:
The suddenness of acquired brain injury can mean a child’s family life, their schooling and their relationships with their friends can be utterly changed overnight. One parent told me it was a little like shaking a snowglobe but having no idea when the flakes will begin to settle down.
It was the shock associated with acquired brain injury that we wanted to address with our new resource www.braininjuryhub.co.uk
Parents told us that in those early days in hospital, they didn’t necessarily want to know about all the complexities that may arise over the coming years – they simply needed to get by on a day-by-day basis. Later on in the recovery process, it seemed that parents wanted to know more as their own insight deepened, and so we developed the Brain Injury Hub as an attempt to mirror the ‘journey’ parents told us about.
Visitors to the site are first asked who they are, and are then taken to a page that asks them where they are in this journey. Are they in hospital? Perhaps their child is back in education, or making their first steps into the world of work. Our hope is that we’ve presented our information in a way that gives parents and carers the information they need within just a few clicks.
The feedback we’ve had following our launch in May has been fantastic, but for all our efforts to create a resource of clinically-evidenced information, it is the real-life stories that our readers gravitate towards. After all, it is the parents who have actually experienced caring for a child with an acquired brain injury who are the genuine experts. We’ve already seen some incredible stories shared.
On a personal level, I’ve been astounded by the capacity of these parents to cope with these enormous changes to their lives with optimism, humour and dignity. I hope over time we will see more of them sharing their stories on our site. Do get in touch at email@example.com if you’d like to share yours. Other families have offered mutual support on our forums, and it has been immensely rewarding for us to see parents taking care of each other and offering advice in this way. http://www.braininjuryhub.co.uk/forum/
We’ve also included some information for teachers on the site, in the hope that this will help what can sometimes be a difficult transition back to school. This part of the site has exceeded our expectations, with thousands of teachers already logging on to find out more about acquired brain injury. Some have signed up for our quarterly newsletter, which has been very encouraging.
Building a resource around such a complicated condition has been incredibly challenging at times, but the project has been very well supported by the clinical staff who’ve shared their knowledge, and the parents who’ve given their time to make it as good as it can be. We’ve had visitors from all over the world, perhaps pointing to the fact that families face some of the same difficulties, whether they’re in Portland, Oregon or Port Talbot.
So do have a look at the site when you have a moment. It’s by no means finished, and we’d like to see the site continue to develop in response to what our visitors want to see. Over the coming months, we’ll be adding some video content to the site, and some improvements to our community space.
If there’s anything you’d like to see on the site, then do drop us a line at: firstname.lastname@example.org
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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