2018 was a fantastic year as we pushed for change, provided support and made a lasting difference to children expected to have short lives in the UK. We are proud to have supported more children, families and professionals than ever before.
Speaking out
Raising awareness and campaigning for change in the palliative care sector is core to our work at Together for Short Lives. We want to ensure that every child and their family receive the very best care and support from palliative care professionals.
This year we’ve run campaigns and worked along colleagues in the sector to amplify the voices of the families we work with. We delivered Children’s Hospice Week in the summer, reaching over 37 million people, even engaging 27 politicians in the week’s activities – we were encouraged to see 17 MPs wearing our charity badges during the week. Children’s Hospice Week shines a spotlight on the amazing children and families we are here for and the services that support them. We asked the families we work with, and the public, to share the little things that make life wonderful.
Mum Kirsty joined our campaign to increase the Children’s Hospice Grant. She shared her story to show the value of the hospice care her family received when her daughter Ella was sadly diagnosed with a rare genetic disorder: “Working with Together for Short Lives and being invited to deliver the petition to Downing Street was a real honour. It gives me great comfort being able to share Ella’s story and keep her memory alive whilst at the same time being able to help others in a similar situation.” In July the NHS announced it will protect and increase the children’s hospice grant.
Fighting for families
“I love the fact that Together for Short Lives is a voice for the disabled community, and for families whose children will have short lives. That’s a big thing for me, because it’s very difficult for individuals to have that voice, or the energy to have that voice. It’s great that Together for Short Lives has that covered.” Mike Turner, Iona’s dad
Throughout 2018 we had 541 one-to-one conversations with politicians and civil servants – a huge increase of 72% on last year!
We worked with a cross-party group of Westminster politicians, the All-Party Parliamentary Group for Children Who Need Palliative Care, to investigate whether the government is meeting its end of life care commitment. The report found that sadly the quality of palliative care children and their families can access is patchy and depends on where they are living.
We teamed up with our members to secure additional funding for children’s palliative care in the NHS Long Term Plan. As a result, NHS England has announced that up to £14 million will be available for statutory and voluntary sector children’s palliative care services by 2023/24.
The lifeline
Together for Short Live’s helpline is here to help families when they need to speak to a friendly voice. We support families when life seems impossible to help them carry on.
This year we are proud to have helped more families than ever before. We saw a 59% increase in calls and provided 16,799 minutes of support:
“Together for Short Lives has been a lifeline for my family. I first rang the helpline last year and the support I received was incredible. You invited me to join the Facebook group and I’ve made friends with loads of others in the same boat. You’re an amazing charity and I really appreciate all that you offer.” Mum contacting our Family support Hub.
Emotional support, bereavement support and financial worries are a few of the most common reasons for families calling our helpline. If you would like to talk to our welcoming team call them on 0808 8088 100.
Thanks to funding from the Department for Digital Culture, Media and Sport and The National Lottery Community Fund we have been able to expand our family support offering to help families caring for seriously ill children feel less isolated.
Supporting lifeline services and professionals
We support professionals so they can support children with life-limiting condition as best as they can. Together with our members we champion, improve and support children’s palliative care services and professionals. We have over 1,000 members, including children hospices, voluntary and statutory sector organisations and professionals who care for seriously ill children and families.
Over the course of the year we’ve supported professionals to share practice and develop their skills with 557 joining our learning events. Professionals play a vital role in caring for the 49,000 seriously ill children – and we are here to support them.
Nearly 9,000 of our specialist publications were downloaded from our website, with 2,100 accessing our Guide to Children’s Palliative Care.
Dr Antonia Wolfe, Nottingham University Hospitals NHS Trust said: “The new edition of the Guide to Children’s Palliative Acre is so useful. The research section has helped us focus our ideas ad make a plan collaboratively.”
Making a lasting difference
We are only able to support lifeline services thanks to our incredible corporate partners who help raise money for children’s hospices across the UK.
Money made through our corporate partnerships raised £475 063 for services like Julia’s House who have supported Mum Hayley and her son Jack: “It is such a relief to have the support of people who know what to do when there is an emergency and can stay calm.”
