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The Kosh and leading children’s charity ACT launch new film by young people with life-limiting conditions
Film-makers the Kosh and UK children’s palliative care charity ACT have launched a new groundbreaking DVD resource called Talk About Change made by young people with life-limiting conditions. Talk About Change, funded by BBC Children in Need, aims to show the reality of making the transition from childhood to adulthood knowing that you have a life-limiting condition.
The new film was officially launched at Richmond House, Whitehall, London on 19th February 2008. It was a joint event where Ivan Lewis, Minister for Care Services, launched the first national strategy for children’s palliative care – Better Care: Better Lives. The strategy responds to the needs of children, young people and families living with life-limiting conditions and sets the agenda for improving the quality of services available to them.
Introducing the film at the launch Ivan Lewis, Minister for Care Services welcomed Talk About Change saying: “Talk About Change gives a powerful and incisive account of the reality of growing up with a life-limiting condition. I applaud the courage and openness of these young people in helping to raise awareness of key issues that these young people face as they make the transition to adulthood. I warmly welcome this resource and hope that it will inform and encourage professionals working within children’s and adult’s palliative care to develop informed responses and services to life-limited young people and their families.”
Talk About Change is based on a series of interviews and video diaries made by eight young people with life-limiting conditions, aged between 12 and 26 years. The film has been designed to give children and young people the opportunity to talk publicly about their hopes and fears as they make their journey into independence; exploring how their health condition impacts on this and affects key areas of their lives including: leaving home; further education and work; relationships and sexuality; planning for the future and end of life issues.
Michael Merwitzer, Talk About Change film-director and Director of The Kosh said:
‘This film is about giving young people with a life-limiting condition a voice. They have a right to be heard. They only ask for things that most people take for granted, independence, relationships and the opportunity to train and get a job.’
Young people also explore how the impact of their health condition or disability has changed as they get older, and highlight a lack of dedicated support services as they approach adulthood. You can view a trailer for Talk About Change at www.talkaboutchange.co.uk
“It’s different when you’re young. The world seems a much more fairer and innocent place. Being younger with a disability – you don’t think about the consequences of that. But as you get older you realise, hang-on, this is holding me back. But it’s adapting to that and understanding this that allows you to succeed.” (Greg, young person with Duchenne Muscular Dystrophy).
Talk About Change has been developed as a key resource for children, young people and families, and it’s hoped that it will help professionals develop more appropriate services and responses as children with life-limiting conditions make the transition from children’s to adult services.
ACT says that there are about 25,000 children and young people with a life-limiting or life-threatening condition, and every year approximately 3,400 children will die.
“Young people with life-limiting conditions tell us as that as they approach the teenage years – and have to leave the support of children’s palliative care services – they often feel as if they are falling off a cliff. They say, ‘you’re either a child or an adult, teenagers don’t count.’ More alarmingly, as some of these children are living longer than they used to, many teenagers say that there’s nothing for them, as they are not ‘meant to be alive’.
ACT is honoured to support Talk About Change. The young people who have made this film have clearly articulated the reality of growing up with a life-limiting condition – it’s a rare opportunity to gain real insight into their lives. We hope this resource will begin to tell their story and help commissioners, policy makers and practitioners improve the planning and delivery of services to these young people.” added Lizzie Chambers, Chief Executive of ACT
The Talk About Change DVD comes with training and guidance notes for parents, young people and professionals. It gives real insight into the realities of growing up with a life-limiting condition and the young people talk openly and candidly about how their health condition impacts on their journey to adulthood. Divided into six sections, Talk About Changes covers:
· Introductions - Meeting the young people in the film.
· Disability - What their condition/disability means to these young people.
· Independence - Is this different for young people with life-limiting conditions?
· Brothers and Sisters - How they see each other.
· Friends and Relationships - Going out, a social life, sex and sexuality.
· The Future – Planning for the future, end-of-life issues, education and ambitions.
You can buy a copy of Talk About Change (available with English subtitles) for Ł10.00 from The Kosh T. 020 8374 0407 or email
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or visit www.thekosh.com
You can download a PDF of an order form here.
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