Two innovative projects launch today, to help young people with a life-limiting or life-threatening condition get the vital support they need, made possible by funding from Together for Short Lives – the UK charity for children’s palliative care.
Advances in medical technology mean that the number of young people with life-limiting conditions is increasing, but a shocking number of young people are not getting the support and care they need. There is an urgent need for new initiatives to transform the experience of young people with life-limiting conditions as they move from children’s to adult services.
Together for Short Lives has been addressing this head-on, with 2017 seeing the launch of their ground-breaking new Improving Transitions for Young People Fund to fund new transition projects.
The charity is delighted to announce the first two projects are ‘Expanding Worlds’ from Martin House Children’s Hospice, working in partnership with St Leonard’s Hospice; and ‘Futures’ from Volunteering Matters, in partnership with Acorns Children’s Hospice.
In partnership with St Leonard’s Hospice for adults, Martin House Children’s Hospice’s project will enable young people to build their resilience and develop skills as they move from the teenage world to the adult world. Working collaboratively with young people, Expanding Worlds will help to identify the areas of biggest challenge and need for them in their move into adulthood, across physical health, emotional well-being, social, housing needs, work and leisure. The project partners will support young people to develop their own direction for the sessions during the project, giving them the opportunity to learn, implement and develop their self-management, proactivity, negotiation skills and resilience.
Charlotte lives in North Yorkshire, and has been supported by Martin House for five years:
“Life can be pretty strange and quite a challenge at times. In December last year my mother died suddenly and then in February this year my father died of heart disease.
“I am 22 years old and have lived happily with them both all my life. They were remarkable parents, fun, loving and kind – the best. Fortunately I have a great brother and sister-in-law, niece and nephew. They live in a small house, but they took me into their home for seven months, until something could be sorted out for me. I have ataxia telangiectasia, a rare degenerative condition that affects the muscles, co-ordination, balance and the immune system. I have problems, but I am doing pretty well considering. I have never lived on my own and it is hard – but also exciting. I am on a steep learning curve. It is quite lonely at times, but my two amazing dogs, Baby and Prince, help me get through.”
“This new project is perfect. I have been involved in its development from the beginning. The voices, wishes and needs of the young people are central; it is not just something that is being imposed on us. There is so much to learn about life, and the plan is that we do it together.
“You never know what is round the corner, so make the most of your life while you can.”
Over 30 months Volunteering Matters’ project, Futures, will support 40 young people aged 17-19 across three Acorns Children’s Hospice sites and at three special educational needs schools in the West Midlands. It aims to support these young people living with complex and life-limiting illnesses and conditions to recognise their skills and positively shape their futures through mentor support. They aim to engage them in skills development, volunteering and social action, and work placements.
Together for Short Lives’ CEO, Barbara Gelb OBEsays:
“Too many young people face significant barriers to getting the right care and support as they make the transition from children’s to adult services. Supporting new initiatives in this area is absolutely vital in enabling seriously ill young people to realise their full potential. I am delighted to launch the ‘Futures’ and ‘Expanding Worlds’ projects today as part of the Improving Transitions for Young People Fund. I can’t wait to see the results as these young people are given the tools and help they need to grow and achieve their dreams.”
Young people with a life-limiting or life-threatening condition haven’t got time to wait for services to catch up with their needs. We need more projects like these to give seriously ill young people a brighter future right now.
Applications for Round Two of the Improving Transitions for Young People Fund will open in March 2018. The Together for Short Lives website will be updated with more details when they are available: www.togetherforshortlives.org.uk.