Innovative transition project launched

16 November 2017
An innovative project to help young people with life-limiting conditions in Yorkshire get the vital support they need is being launched today.

Martin House Hospice Care for Children and Young People is running one of the first two projects, funded by UK children’s palliative care charity Together for Short Lives.

The project, Expanding Worlds, which is being run in partnership with St Leonard’s Hospice in York, is part of TfSL’s new Improving Transitions for Young People Fund.

Dr Jan Aldridge, consultant clinical psychologist at Martin House, said: “There is a new generation of children with life-shortening conditions living longer into young adulthood. However at this particularly difficult stage they often feel abandoned and neglected by wider society.

“We are delighted that this award from Together for Short Lives will help Martin House and St Leonard’s hospices work with these pioneering young people to develop an innovative new model of care and development.”

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

Expanding Worlds will develop, evaluate and share an innovative service for young adults with life-limiting and potentially life-shortening conditions.

It aims to explore an integrated model of care and development – spanning physical health, emotional wellbeing, social support, housing needs, work and leisure – supporting the young people’s development and ability to interact as effectively as possible with the wider adult world.

Barbara Gelb, CEO of Together for Short Lives, said: “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 Expanding Worlds project 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."

Emma Johnson, Clinical Director at St Leonard’s Hospice, said: “We’re delighted to be involved in this invaluable project. The focus is on person-centred care, and the social element is vital for young adults with life-limiting illnesses who can feel socially isolated.

“Meeting people, sharing information and getting the right support from professionals and peers is key to developing relationships and enhancing social skills. This can help young people feel listened to and valued.”

Applications for the second round of Improving Transitions for Young People Fund open in March 2018, details are available from

Charlotte Pethen, 22, 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 rate 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.”