Perhaps an odd title for a blog as we enter a period of unprecedented political and social change both here and abroad. But events over the past 12 months, and indeed those ahead, have reinforced my belief that what unites us is greater than what divides us, and the future effectiveness of our sector is dependent on this shared belief.
This feeling was powerfully reinforced at our national conference held over two days in Birmingham last week. This was a timely opportunity to consider together the ‘defining moments’ in the life of a child and family. The big take away for me, heard time and time again from our brilliant speakers and delegates, was the word collaboration. I left motivated and inspired by what I heard.
Our ability as a sector to ensure the best quality of life and end of life care for the 49,000+ children, young people with life-limiting and life-threatening conditions and their families is dependent on us working together. This means building stronger partnership and collaboration across the hospice, community and statutory sectors to share ideas, to develop new ways of working which recognise our individual strengths but do so in a way that is driven by a complete and clear focus on what is best for children, young people and their families.
There are examples of this happening but it is challenging. It requires us to shift the dial, to park the challenges of the past and look to what is possible for the future. As one colleague noted at our recent children’s hospice reference group meeting, we need to think about how we define and develop a cross sector partnership that delivers a children’s palliative care service fit for the 21st Century. In the politics of collaboration, we might think of ourselves as a children’s palliative care movement, with Together for Short Lives providing a clear and unambiguous voice, driving an agenda that delivers better joined up care for children and families which convinces policy makers, commissioners and funders to do things differently.
This thinking is timely. Our work on our new strategy from 2018+ is providing much food for thought in this area. Understanding what ‘great’ looks like in 2028 is challenging but it is building a body of thinking, ideas and reflections which will better equip us for the future. We are still in the early stages of our thinking (and I encourage you to get involved) but the themes of being a broker of ideas, networking good practice, and of being an active partner and collaborator for change is clear. There are examples where we are putting this into practice through our work on the development of Managed Clinical Networks for Children’s Palliative Care and also in learning from our Family Volunteer Support Project which is engaging communities in help and support for families.
Some immediate examples of the further collaboration I want to explore now include how we build on our Transition programme of work which supports innovative practice to provide a safe bridge of care between children and adult services. We will shortly be announcing the first awards within our recently launched grant programme which will help make this happen – to shine a light on what works and build a body of evidence for great practice. Our leadership in this area means we are now exploring with others such, as Hospice UK, how we can collaborate to provide solid foundations for that bridge between the children and adult sectors.
When I think of collaboration I also look to the work of other charities such as those working in children’s cancer. I have been impressed by charities such as CLIC Sargent and Teenage Cancer Trust. Both operate in similar areas but are committed to working together, recognising each other’s strengths, understanding when they should work together and also when they need to avoid duplication and can leave the other to focus on their area of expertise. We are committed to working more closely with them – where we have some shared goals we have a much more powerful voice when we speak as one.
So back to the politics. Together for Short Lives has had a strong year in influencing change and whilst we still face significant challenges there are reasons to be positive. The clear inclusion of children in the Government’s choice at end of life care commitment and the NICE guidelines are but two examples. We are committed to working with others to making these ambitions a reality on the ground, for children, young people and their families and those that support them.
We recently published our 7 manifesto asks for the forthcoming general election. We are engaging in a competitive market place for the attention of policy makers and party strategists. But one thing I am certain of is that if we are to ensure maximum impact for the lives of the 49,000+ children and their families, collaboration is imperative across the children’s palliative care sector and beyond. What unites us is certainly greater than what divides us.
Barbara Gelb is CEO of Together for Short Lives, you can follow her on twitter @BarbaraCEO_tfsl