Improving Transitions for Young People Fund
What is the Improving Transitions for Young People Fund?
Together for Short Lives has launched a ground-breaking new funding programme to help address the cliff edge in care experienced by young adults in their transition from children’s to adult services.The programme is funding innovative projects that have the potential to transform the experience of young people with life-limiting conditions as they prepare for and move on to adult services.
The fund's 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.
Who can apply?
The Improving Transitions for Young People Fund is open to organisations from across the UK for projects which are to be delivered in the UK and which deliver any element(s) of the Pentagon, which maps the five areas of support needed to meet the full spectrum of young people's needs: health, social care, education, employment & housing. Eligible organisations will include hospices; voluntary sector organisations; NHS and other statutory organisations; and social enterprises which offer services free at the point of delivery. We are keen to encourage applications from partnerships. We will seek to ensure a good geographical spread in our selection process.
Why is this so important?
There is an urgent need for new initiatives. Advances in medical technology mean that the number of young people with life-limiting and life-threatening conditions is increasing, but a shocking number are not getting the support and care they need. Tailored services for young people barely exist, with support from children’s services often ending without support from adult services in place.
The new funding programme will act as a catalyst for change in this area. It will provide an opportunity for service providers to work together to improve the experience of transition for seriously ill young people with very complex conditions, and to help them to achieve the best quality of life possible across the full spectrum of their needs. We are keen to see a wide range of applications and partnerships across and within the five key areas of support: health, social care, education, employment and housing.
We are seeking to fund initiatives which have a strong local commitment and the potential to deliver a long-term change. We aim to build a portfolio of well-described, real-life examples of service developments that can be readily understood, replicated and adapted by other providers, commissioners and policy makers.
Together for Short Lives will identify and provide ongoing support to the successful award holders. We will promote the spread of successful projects so that more young people with life-limiting conditions will get the support they need as they move from childhood to adulthood.
Who will benefit?
The key beneficiaries will be teenagers and young adults aged 14-25 with a life-limiting or life-threatening condition and their families. It is intended that it will support both projects that help teenagers through transition and projects that help young adults as they settle into adult life.
Meet some of the young people we work with who have experienced, or are experiencing, the move to adult services.
Lucy is 22 and has Ehlers Danlos syndrome, a condition that means she is attached to intravenous drips almost 24 hours a day and is mostly restricted to her bed. At 16, Lucy began the move to adult services and found that there was very little provision for young people like her. Fortunately, her experience of transition improved thanks to a well-trained and dedicated team. You can read her story here.
Iwan is 20 years old and has epilepsy, secondary osteoporosis and global development delay, amongst other conditions. When Iwan turned 18 he was assigned a new care package that was inadequate for his needs and meant the family became exhausted and overstretched. In Iwan's story, his mum Margaret talks about the issues they faced with finding appropriate home care, and the importance of a joined-up approach to transition. Read Iwan's full story here.
Mithun is 24 and has Duchenne Muscular Dystrophy. His transition journey started when he was 18, when he met with a group of health professionals. Focusing on his health, they didn't address his education, social care, employment or housing needs. Since then Mithun has joined a number of steering groups to improve other young people's experiences of transition. Read his story in full here.
How to apply
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
This programme has been made possible thanks to the generosity of charitable foundations committed to making change happen for those who need it most.
 Fraser L et al (2013). Prevalence of life-limiting and life-threatening in young adults in England 2000-2010: Final Report for Together for Short Lives.
 Transition is “a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems.” Blum RW et al, 1993
Life-Limiting Conditions are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on parents and carers.
Life-Threatening Conditions are those for which curative treatment may be feasible but can fail, such as cancer. Children in long-term remission or following successful curative treatment are not included.