James Cracknell - life still a battle......

A recent article by  James Cracknell for the Daily Mirror. http://www.mirror.co.uk/news/real-life-stories/james-cracknell-on-battling-back-from-horrific-1156454 highlights the ongoing difficulties he has with his brain injury and the effect it has on his family.

Although James acquired his brain injury as an adult, many of the issues he talks about are the same for families affected by childhood acquired brain injury.  He and his family have had to adapt their lives around Jame's brain injury who still suffers with fatigue, seizures and emotional difficulties.

We need people like James Cracknell who are not afraid to talk about brain injury to champion the cause not only for adults but for the many thousands of children and young people who acquire brain injury every year.

I would urge you to read the article


Lisa Turan
CEO

CAMPAIGN LAUNCHED TO IMPROVE SERVICES FOR PEOPLE WITH ACQUIRED BRAIN INJURY

UKABIF has details on its website of how you can support the Campaign so please visit

3 July 2012

“We’re demanding immediate action on a local and national level to force change” said Professor Michael Barnes, Chair of the United Kingdom Acquired Brain Injury Forum (UKABIF) and Professor of Neurological Rehabilitation, Hunters Moor Rehabilitation Ltd, at the July launch of UKABIF’s Campaign ‘Life after Brain Injury? Improve Services Now’.
Over one million people live in the UK with the effects of Acquired Brain Injury at an estimated minimum cost of £4.1 billion.
Professor Barnes continued: “People with an Acquired Brain Injury need access to specialist rehabilitation but these services vary considerably around the UK and this is having a detrimental impact on the how well patients ultimately recover”.

UKABIF aims to promote better understanding of all aspects of Acquired Brain Injury and the Campaign’s Manifesto entitled ‘Life after Brain Injury – A Way Forward’ outlines the organisation’s urgent demands.  “We know that patients benefit from acute and early access to specialist neurological services but this crucial aspect of patient management continues to be overlooked” said Professor Barnes. “Our Manifesto presents four key recommendations which we hope health professionals, purchasers and providers of services and the general public will support.  By working together locally we can improve services and ensure that people with an ABI have the best possible treatment” he concluded. 

The Manifesto is asking for:   

·         Appropriate commissioning for specialist brain injury rehabilitation should be made compulsory and each clinical commissioning group should have a named neurological lead

·         Funded National Neuro Networks should be established to ensure neurological pathways are available throughout the stages of recovery (patient journey)

·         A National Audit of Rehabilitation should be carried out and the collection and reporting of accurate data on newly Acquired Brain Injuries made compulsory by all providers along the patient journey, from Acute to Community services*

·         A review is required of The Health Select Committee Report and the National Service Framework (NSF) for Long Term Neurological Conditions.

*As implemented with Stroke though Healthcare Emergency Planning and the Care Quality
 Commission

UKABIF has details on its website of how you can support the Campaign so please visit www.ukabif.org.uk to find out what you can do to help.   

ENDS

Notes to editor An Acquired Brain Injury is defined as brain damage caused by events after birth and can result in cognitive, physical, emotional, or behavioural impairments leading to permanent or temporary changes in functioning.  Acute and early access to local, specialist rehabilitation is essential to ensure optimal recovery, whilst maximal recovery over a lifetime can result in significant savings.  

UKABIF aims to promote better understanding of all aspects of Acquired Brain Injury; to educate, inform and provide networking opportunities for professionals, service providers, planners and policy makers and to campaign for better services in the UK.  UKABIF is a membership organisation and charity, established in 1998 by a coalition of organisations working in the field of Acquired Brain Injury.

Hard copy of the Manifesto is available.  Spokespeople and patient case studies are also available.

For further information, please contact:   Chloë Hayward, UKABIF
T: 0845 6080788     M: 07903 887655
E: info@ukabif.org.uk
www.ukabif.org.uk

Louise Blakeborough, Chapter Five
T: 01306 731800     M: 07831 444789
E: lblakeborough@chapterfive.co.uk

www.ukabif.org.uk to find out what you can do to help.     

Mary and Claire staffing the Child Brain Injury Trust stall.

Head injury information Day 2012

To mark Action for Brain Injury Week 2012, the second Head injury information Day was held on 16th May at the Grand Central Hotel in Glasgow. The event was organised by the Brain Injury Network Group - an informal network of organisations in and around Glasgow who work with people with acquired brain injury - and Digby Brown solicitors, who also sponsored the day. 

The Day aimed to provide information about the effects of brain injury and the different services that can be accessed by people with brain injury and by their families and carers. It was also an opportunity for the organisations involved in services to network with each other.

Over 300 people attended; a great success. As well as exhibits from over 20 organisations, there were a number of speakers including representatives from the Brain Injury Rehabilitation Trust, Case Management Services, Headway Glasgow, and the Huntercombe Group.

Robert Swanney, head of Digby Brown’s Brain and Spinal Injury Unit, welcomed guests and spoke about the importance of the event in raising awareness of brain injury and the services available to those who have suffered brain injuries. Councillor Allan Stewart, former Deputy Lord Provost of Glasgow, spoke of his own experiences as a service user at Graham Anderson House in Glasgow and paid tribute to the Brian Injury Rehabilitation Trust at that facility. The Scottish Head Injuries Music Support Group provided a memorable musical welcome to the afternoon session.

The feedback from the day has been wonderful. Here are just a few of the comments:

• "The head info day was really fantastic, it was so well represented and really well organised. Found the presentations I sat through very interesting as well. The service users we brought along with us found it extremely informative. Was nice to see a few old faces of previous service users too!”
• “Everyone from Digby Brown made sure the day, especially the presentations, ran smoothly. It was a fantastic day and everyone appeared to enjoy it. Thank you again.”
• “Great day, brilliant for networking and sharing ideas and issues; very worthwhile event and great for the future; well done”

If you would like more information about next year’s Head injury information Day, please get in touch with Kathleen McMonagle at Kathleen.McMonagle@digbybrown.co.uk.

Our CEO is guest blogger for JMW

Our CEO is guest Blogger for JMW. 

Hot off the presses!

New look newsletter launched

The first edition of our brand new quarterly newsletter is now available to view and download. Simply click here!  It contains inspiring fundraising stories, news on interesting products to help keep your children safe and contact details for our brand new benefits check up service, supplied by Frenkel Topping.

We'd love to hear what you think about the newsletter.  Why not visit our Facebook page to let us know?  Or email Claire here: claire@cbituk.org with your comments or suggestions for the next one.

Special needs budgets to be controlled by parents

Article by Sean CoughlanBBC News education correspondentSource:  BBC News Website http://www.bbc.co.uk/news/education-18061348 

Parents are to be given more financial control over support for children with special educational needs, in a major shake-up of the system in England.

The government says it wants to push ahead with proposals announced last year that parents should have a "personal budget" for their children.

The changes could also see fewer children in the special needs category.

Children's minister Sarah Teather said the current system was "outdated and not fit for purpose".

The government is setting out its response to last year's green paper on special educational needs - which warned that too many parents felt frustrated with having to "battle" against the system.

Personalised help

It also said that too many children were being labelled as having special needs - with more than one in five pupils currently in this category.

It called for parents to be given more control over spending the budgets available to help their children.

Continue reading the main story

“Start Quote

Thousands of families have had to battle for months, even years, with different agencies to get the specialist care their children need”

Sarah TeatherChildren's minister

Ministers now want to press ahead with this proposal, so that by 2014 parents would have the right to buy in services, rather than relying on the options decided by local authorities and support agencies.

This is intended to help parents ensure a more personalised package of support for their child.

But parents would still be able to leave such decisions to the local authority if they preferred.

There will also be a push for more co-ordinated commissioning of support between education, health and other services, to reduce the risk of delays or bureaucracy.

The intention is to remove the sense of a struggle between families and support agencies over assessments and the support available.

A major change will be the scrapping of the current system of statements setting out the extra help that has to be provided for children with severe or multiple learning needs or disabilities.

Rising numbers

A simpler system is promised with the introduction of a single assessment process, for all levels of special need, which would result in an integrated Education, Health and Care Plan.

But children who have statements are only a small proportion of children classified as having special needs.

And the green paper suggested that "too many children are being over-identified" as having a special need, with this label being applied to a very wide variety of problems.

A report from Ofsted in 2010 claimed that the special needs category was being used too widely.

Teachers' unions strongly rejected the claim and warned of cuts to support services for special needs.

Within the school population, 2.7% of children have statements - representing those with the greatest physical or mental health needs.

But almost 18% of children are categorised in two lower levels of special need - School Action and School Action Plus - representing about 1.4 million pupils.

This includes difficulties such as persistent emotional, social and behavioural problems, communication difficulties or a sustained inability to make progress.

'Unacceptable'

The proportion of children identified as having special needs, outside of those with statements, has risen sharply - up by 80% since the mid-1990s.

The green paper identified the rise in some specific areas - behavioural and emotional difficulties rising by almost a quarter in five years.

Speech and communication problems had risen as a special needs problem by 58% over the same period between 2005 and 2010.

The children's minister said the changes would help remove the delays and confusions facing families who need help for their children.

"Thousands of families have had to battle for months, even years, with different agencies to get the specialist care their children need," said Ms Teather.

"It is unacceptable they are forced to go from pillar to post, facing agonising delays and bureaucracy to get support, therapy and equipment.

"These reforms will put parents in charge. We trust parents to do the right thing for their own child because they know what is best.

"The right to a personal budget will give them real choice and control of care, instead of councils and health services dictating how they get support."

The proposals will be included in a Children and Families Bill announced in the Queen's Speech.

Horse and Hound promote Cook Book

By Madeleine Pitt - Horse and Hound
11 April, 2012

Mary King shares her flapjack recipe in a charity cookbook

Top eventer Mary King has contributed to a charity cookbook with her trusty competition snack — "extra juicy flapjacks".

Mary has joined Raymond Blanc, Dame Judi Dench and Mary Berry in donating a recipe to “21 Treats for 21 Years”, which celebrates the Child Brain Injury Trust’s 21st anniversary.

The charity— which Mary became a patron of in March 2011 — supports families of children with brain injuries and provides information and training for healthcare workers.

“I felt it was a fantastic charity to support, helping families with children who’ve had accidents,” Mary told H&H.

“Especially as a mother, with my daughter Emily riding, you dread to think of anything awful happening to their head.”

The cookbook costs £5 (plus £1 p&p).
To order a copy call 01869 341075 or email annemariemacmillan@cbituk.org

Sophie says thanks

Sophie Hanvey presents Nadia Magee of the Child Brain Injury Trust with a cheque for £2,890. Big-hearted Sophie helped raise the funds for the charity by organising a pub quiz and a triathlon event.

JORDANSTOWN girl Sophie Hanvey has helped raise over £2,800 for the Child Brain Injury Trust and she presented a cheque to the charity this week.

Following a brain haemorrhage in December 2005 the charity played a major role in helping and supporting Sophie, who is now aged 19, readjust to life.
Extensive treatment meamt Sophie’s recovery was slow but eventually she was able to return to school, helped by a classroom assistant and the Child Brain Injury Trust.
As a thank you for their support, Sophie held a triathlon-style event in Ballyearl Leisure Centre last July and a quiz in the Ulster Transport Bowling Club in November to raise much needed funds.
Sophie raised £2,868.75 and presented a cheque for £2,890 to Nadia Magee of the charity.
Sophie thanked everyone who sponsored her and made donations towards this worthy cause, especially the staff and management of Vivo Essentials on Circular Road Jordanstown; Village Pharmacy, Whiteabbey; staff at Ballyearl Leisure Centre and the Ulster Transport Bowling Club in Jordanstown.
Sophie’s father Trevor said: “The Child Brain Injury Trust was a great support but it is not fully funded and relies a lot on donations and Sophie wanted to repay some of the help she received.”

This story and photo appear courtesy of Newtonabbey Times. All copyright applies.

Risky Business - success

Andrew Curran - Alderhay

Rachel, Theresa and Claire show off the cake at the Child Brain Injury Trust stand

A delegate deep in thought

We had a fabulous conference on 29th February and thoroughly enjoyed the day.  Over 230 delegates attended our 2012 conference, held at the Hilton Hotel in Birmingham.  The day focused on the topic of infant and primary school aged children who acquire a brain injury, and their families.  The programme was full of emotion and some humour thanks to our brilliant speakers.

Andrew Curran (top photo) opened the day with the science behind the developing brain and as always made the most complex subject, simple and easy to digest.  Andrew, you are our champion and we are humbled by your commitment to our charity.

Dave Stones (father of William, aged 3) was an inspirational and moving speaker - you are brave and 'real' and we are honoured to support you.

The exhibition hall was full to bursting with stands full of great information and 'give-aways' - Compass Costs cuddly dragons definitely won the best 'give-away' of the day.

As you can see in the photo above, our stand was very colourful and full of lovely cakes made by Child Brain Injury staff Anne-Marie and Lisa - the samples proved very popular! They used the recipes from our new fundraising cook book, '21 treats for 21 years' which has a foreword and recipes supplied by the queen of cakes Mary Berry as well as Raymond Blanc and some of the young people we support. These are available to purchase, email Anne-Marie for more information: anne-mariemacmillian@cbituk.org.

We also signed lots of wannabe challengers up for a Challenge 21 - see our main site for more information on what's happening or contact anne-mariemacmillian@cbituk.org for further details.

All in all it was a super day and I am so proud of everyone who played a part.

See you next year,

Lisa Turan
CEO

Welcome to Holland by Emily Perl Kingsley

Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

*     *     *
©1987 by Emily Perl Kingsley. All rights reserved.  Reprinted by permission of the author.