Moments that count
There are 49,000 children and young people living in the UK with health conditions that are life-limiting or life-threatening—and the number is rising. It’s never been more important to give these children and their families a powerful voice and help them make every moment count.
Together for Short Lives has published ‘Making an impact: Moments that count 2015-16’. Our impact report has gone digital for the first time; as well as publishing its report in traditional formats, you can also experience an interactive version here: http://togetherforshortlives.ouryear.org/.
Barbara Gelb OBE CEO, said: “Children with life-limiting and life-threatening conditions don’t have time to waste. That’s why Together for Short Lives, along with our 900-strong membership and community, is committed to delivering lasting change, but there is so much more to do.
“We must ensure that the resources and services are there for these children and young people. More than ever we must redouble our efforts and drive change, so that every single child and their family can get the care and support they need to make the very most of their time together.”
In this, the second in the series of ‘Making an impact’, we share the impact we've made for children and families, together with our members. Highlights include:
• Listening and responding to families and providing specialist information. This year Together for Short Lives responded to 440 helpline enquires, providing almost 9,000 minutes of support to those who need it most – with 100% of families and carers saying they were 100% satisfied their needs were met.
• Connecting 72 families with legally trained advocates to resolve complex issues.
• Working to secure a sustainable workforce for the sector – almost doubling the number of student members for doctors, nurses and professionals, from 346 to 649.
• Improving knowledge about Special Education Needs and Disabilities (SEND) in England with 100% of commissioners attending their SEND classes reporting increased understanding in children’s palliative care.
• Helping commissioners to better plan and fund transition services and putting young people at the centre of their work with a pioneering ‘Young Avengers’ group. Young Avenger Junior says “I felt like I was in a dark place where only about three people actually understood me and where I was coming from… Now the link with Together for Short Lives has really opened my mind in moving forward.”
• Lobbying governments to provide vital funding for children’s palliative care – the government and NHS England have committed to continuing the children’s hospice grant into 16/17, without which 89% of children’s hospices would be forced to reduce their family offer.
• Generating 2,500 media stories, equivalent to at least seven every day, to put children’s palliative care firmly in the spotlight.