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Together for the 49,000 – Our Value and Impact

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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. Together for Short Lives is here, together with our 1000 plus members, to give these children and their families a powerful voice, to help support, join-up and improve services to help them get the very best care and support they can so they can make the most of every moment together. We have today published Together for the 49,000: Our Value and Impact 2016-2017, showing the difference we have made, with our members, for seriously ill children, their families and the children’s palliative care services and professionals that care for them.

The difference we have made with our members is told through stories, films, images, infographics and quotes in an interactive digital version of the impact report: This includes stories from parents like Sacha Langton-Gilks, who says: “Campaigning with Together for Short Lives means we can change things for families in the future – a fitting legacy for our late son – priceless.”

By working together with our members, Together for Short Lives has achieved the following:

  • Raising funds for lifeline children’s hospice services all over the UK. This year Together for Short Lives distributed £720,000 to children’s hospices – that’s the equivalent of almost 30,000 hours of care
  • Securing a two-year commitment with NHS England for vital funding for children’s hospice services in England of £11 million each year
  • Reaching out to families through a helpline and information service. This year Together for Short Lives spent 111 hours talking to families through our helpline, and 100% of families said that the information they were given was of a high quality. Providing expert legal help through a free advocacy service, connecting 66 families with legally trained advocates to resolve complex issues
  • Helping young people grow up with dignity. This year Together for Short Lives launched a new project to help secure change for young people with life-limiting conditions. The charity’s new Transition Awards Programme secured £750,000 to drive innovation and kick-start support services for these young people
  • Working to secure a sustainable workforce for the sector. This year Together for Short Lives campaigned to address the serious shortfall of specialist nurses working in children’s palliative care and opened people’s eyes to a career as a children’s palliative care nurse. Our film – You Can Be That Nurse was watched by over 34,000 people, and social media story about the film reached over 95,000 people
  • Published vital information and resources to support families and the children’s palliative care sector, including aPerinatal Care Pathway to help professionals deliver timely support to babies who need palliative care; and a Special Educational Needs and Education (SEND) resource for families, to help them navigate the new SEND system
  • Supporting families at home. With funding from The Royal Foundation and The True Colours Trust, Together for Short Lives worked with three sites to pilot an innovative volunteering project. The Family Support Volunteer Programme engaged volunteers to provide practical support in the homes of families – like washing up, gardening, or spending time with brothers and sisters who have a seriously ill sibling. This year 62 families have been matched with volunteers, and have provided 692 hours of volunteering at home – that’s the equivalent of 28 full days
  • Making important strides forward in improving end of life care for children and families – ensuring that children were included in the governments of life care commitment. Securing important changes to the new NICE guideline End of Life Care for Infants, Children and Young People, so it is the best it could be for seriously ill children and families
  • Being a powerful voice for seriously ill children, young people and families. This year Together for Short Lives helped form the first ever All Party Parliamentary Group for Children Who Need Palliative Care and held a special Westminster Event attended by 150 MPs and peers, families, young people and professionals from the children’s palliative care sector
  • Delivering high profile awareness raising campaigns, Together for Short Lives told powerful family stories and pushed forward an ambition to reverse the unfair baby benefit bar affecting seriously ill babies and young children. Putting families first was the theme of the charity’s national Children’s Hospices Week Campaign – reaching an audience of over 40,000 on twitter and over 600 pieces of media coverage – that’s an average of 86 stories in the press each day.

You can read more about Together for Short Lives’ impact here.

Barbara Gelb OBE, CEO of Together for Short Lives said:

“Children with life-limiting and life-threatening conditions don’t have time to waste. These children and families have the weakest voice and are among the most vulnerable in our society. That’s why Together for Short Lives, along with our 1100 strong membership and community, is committed to delivering lasting change by providing children, families and the children’s palliative sector with the guidance, resources and support they need, and campaigning for sustainable and fair funding and policy change. This year we have used the generous support from our funders to make a real difference.”

“Our Impact Report highlights that difference – publishing vital resources and information for families and professionals, delivering a new approach to encourage investment in volunteers; fundraising for lifeline services, connecting families, improving end of life care; launching an awards programme to improve young people’s services, and being a loud voice for children, young people, families and the children’s palliative care sector.”

“We still have a huge mountain to climb to ensure the 49,000 get the very best care today, and in the future, but by working together, we have the best chance of delivering positive change for children and families and those that support them.”

View Together for the 49,000: Our Value and Impact 2016-2017 as an interactive webpage or read the full report here.


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