The Brain Injury Hub – a brilliant resource

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:

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copyright The Children's Trust

Courtesy The Children’s Trust

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 hub@thechildrenstrust.org.uk 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/

copyright The Children's Trust

Courtesy The Children’s Trust

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: hub@thechildrenstrust.org.uk

 

The lifetime legacy of special needs left by meningitis

I recently met the chief executive of The Meningitis Trust, Sue Davie, and heard her talk about the hidden after-effects that meningitis can leave on children who’ve apparently recovered.  The special needs they have due to acquired brain injury are often missed, but in this guest post, she explains how the illness can leave a long-lasting legacy.

Meningitis strikes fast but its impact lasts a lifetime. It’s a disease that can affect anyone, of any age, however children under five are the highest at risk group. People often think about the mortality rates of meningitis (sadly 10% of people will die) and the physical after-effects of the disease, such as limb loss (where septicaemia has occurred), but what few people understand is that 30-40% of children who survive meningitis will be left with other devastating after-effects. Some of these other after-effects can be hidden and may not become apparent until some years after the meningitis, most commonly causing difficulties at school.

c. Meningitis Trust

At the Meningitis Trust, research we commissioned has provided the scientific evidence to back up what we already knew from the thousands of families we have supported over the years. The research compared children who had survived meningitis with those of the same age who had not had it. Many differences were found, including:

  • Significant deficits across all aspects of memory
  • Poorer executive function – leading to problems with planning and organising
  • 4 times more likely to have mental health issues
  • 5 times more likely to have speech and communication problems

Effectively, as difficult as it is for a parent to hear, their child may well have been left with what is known as an acquired brain injury (ABI) as a result of the meningitis. And there is little or no understanding or even acknowledgment of the impact of ABI on a child’s education. It is like the silent epidemic – inherent damage that may not be seen for years and is an evolving disability. Whenever special education needs are discussed, rarely if ever does it include the needs of those children who “acquired” difficulties.

An excellent publication, “Educating Children with Acquired Brain Injury” by Beth Wicks and Sue Walker highlights why children with ABI have different special needs including::

  • There may be delayed deficits – injury may have been to a part of the brain responsible for skills not required until later in life e.g. a child may appear to be doing well in Primary School, but on transition to Secondary, issues appear as they have problems with their executive function responsible for planning and organising
  • There are often significant discrepancies in ability levels e.g. excellent vocabulary knowledge but lack of organisational skills to formulate expressive language
  • Things that change frequently – they can seem to be learning rapidly at times, other times slow or plateau effect. And they can “grow out” of problems as they recover or compensate for impaired ones
  • They may score OK on conventional tests of intelligence as they have retained previous learning (meaning they are at age-equivalent level), but they gradually fall behind as new learning is impaired

As the impact of meningitis and ABI generally is not understood by those responsible for identifying need, it’s not a surprise that it goes unsupported:

  • As it is often an evolving issue, it does not fit standard SEN systems
  • It is usually complex (i.e. many different facets to it), frequently leading to some individual components being identified but in isolation
  • The cause of the issues may have been years before (e.g. meningitis as a baby) so it is not connected and therefore the root cause not considered (ABI)
  • Generally, teacher training in special educational needs is poor and does not include training on ABI and its impact
  • And the people responsible for assessing children, the Educational Psychologists, have very little understanding and expertise in ABI – and yet they are advising schools.

Alongside families, schools are the major providers of rehabilitation for children with ABI and yet the system that is in place lacks the knowledge of what has happened, its impact and how best to meet individual needs.

A report called “Missing Out” was produced in 2001 by the Childrens’ Acquired Brain Injury interest Group. A number of recommendations were made including around ABI awareness and education amongst teachers and educational psychologists. 11 years on and nothing has really changed.

The Meningitis Trust exists to support people affected by meningitis and we are now fighting on behalf of all the children who have survived meningitis to get them the educational support they deserve. Alex, one of our Young Ambassadors who was 8 when he contracted meningitis said “I thought being in a wheelchair was the hardest part – but I was so wrong. I found myself struggling with work that I could do before with my eyes shut” and he also said “It was not my fault I had meningitis – I still deserve an education”. You can read his story at this link in his own words.

And for parents it is a heartbreaking battle – this is what two mums said:

  • “None of the professionals who came to the meeting about my son had any knowledge of meningitis or the after-effects. I felt like he was just set up to fail. They say education is inclusive ….. not for children who have had meningitis”
  • “Throughout my son’s school life, he was forced to fail before he could get any help and his self-confidence was left in tatters – if it had been an obvious physical disability he may have got the help he needed”.

Meningitis may be considered a “rare” disease but there are over 20,000 children in the school system who have had meningitis and as many as 40% of these may be struggling. But ABI can be caused by many things and if you consider that every year there are over 500,000 children under 16 in the UK admitted to hospital for head injury, and more than 10% of children can have illnesses that can cause ABI (including meningitis) – it means the number of children potentially struggling in education without the support they need because of an ABI is huge. But the system continues to fail them because the impact is not understood – and that cannot be acceptable.

Children who have had meningitis have already had to fight for their lives – they should not now have to fight for their future. Support our campaign today – just go to www.meningitis-trust.org to sign our petition and see how you can help children like Alex.

Footnote:

Knowing the signs and symptoms can help to save lives and I urge you to ensure you have this knowledge close to hand. You can download our free meningitis app at  www.meningitisapp.co.uk, go to our website  or call our 24 hour freephone helpline (0808 80 10 388) and get a free credit card sized symptoms card. Why don’t you order some for everyone you know, your school/nursery etc. Remember, anyone at any age can get meningitis so everyone needs to remain vigilant. Having our information close to hand saves lives – we know because many people tell us.

If you have been affected by meningitis, you do not need to suffer alone, The Meningitis Trust helps people to move forward, providing free emotional, practical and financial support – just call us on 0808 80 10 388, email us at support@meningitis-trust.org or go to our website www.meningitis-trust.org. Or why not join our Facebook or Twitter