Together for Short Lives wants to improve the quality of life and the quality of end of life care for children and young people with life-limiting and life-threatening conditions. We want to ensure that their families are supported, informed and empowered on their journey with their child. And we want to help achieve the best for those individuals and organisations providing vital information, care and support to children and families, whether that be in the community, in hospice or in hospital.

To achieve this we are developing our strategy for 2018 and beyond, and earlier in the year we consulted with a wide-range of stakeholders on their views. You can find out more about this consultation process, and a summary of our first phase of consultation on our website.

We are now at a key point in the process. The summary we have published shares our thinking based on what we heard in the first phase of our engagement as well as information gathered from wider evidence review. It is vital that our strategy is informed by those we seek to work with and support. If you wish to comment on our plans please complete this short survey below.

Please submit your comments by 22 September. We will consider all responses with a view to publishing a final strategy in the New Year.

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* 1. Our draft strategy framework outlines the following outcomes we want to achieve. Please share with us your views on these in the box below.

1.     A strong and sustainable children’s palliative care sector

We want to help build a thriving, innovative and collaborative sector with the resources, services and workforce to deliver high quality support and care for all families. We want to ensure that children’s palliative care services are sustainable across the UK so that they can meet the demand for care and support. 

This means having a fair and equitable funding mechanism that recognises the contribution services make to children’s palliative care, the positive outcomes they bring to children and families and understands the cost benefit of investing in those services whilst leaving space for innovation and service development. This includes having comprehensive investment and support across the journey of a child and their family from diagnosis to end of life, into bereavement and beyond. It also means having a programme of investment and education to build a diverse workforce with the knowledge, skills and confidence to meet the demand for increasingly complex care across voluntary and statutory services.

2.     Supported and empowered families

We want families to be able to make informed decisions about care for their child and for themselves and feel connected, supported and empowered. 

This means ensuring that the workforce and ‘system’ provide timely information to them and that support is available to help them understand and access the right care. Families should be empowered to ask questions and feel able to communicate their wishes. It also means that barriers to care are reduced and access to services and forums that build resilience (e.g. short breaks and support groups) are further developed.

3.     Joined up care and services

We want families to be central to discussions and decision making that affects them.  We want to help join up, connect and orientate services and support around children, young people and their families. We want to help make the system more efficient, effective and compassionate. 

This means sharing and learning what works well and building upon and disseminating best practice to build greater understanding and support for children, young people and families.

4.     Greater understanding and support for quality children’s palliative care

We want to live in a society where the needs, challenges and aspirations of children and young people, and their families are understood and supported. A society where the professionals and services that care for them are valued, cherished and supported, and where the public is better informed, more engaged and more willing to support children and families. 

This means creating an environment where we remove stigma and isolation, where communities are inclusive and supportive of families and children, so they can feel part of it and engaged in their communities.  It also means we have a society where the public is willing to give time, support and resource to children, families and services.

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* 2. Our draft strategy framework also outlines how we will achieve these outcomes.  Please share with us your views on these in the box below.

1.     Insight 

Together for Short Lives will play a lead role, working with others, across the children’s palliative care sector to build and share knowledge and data.  This will help inform our work and that of others to better tell the story of children’s palliative care and the impact it has on the lives of children and families and on the public purse.  We will use insight to be a recognised, respected and authoritative source for the sector and others.  A key focus in this area will be building a better understanding of where children with life-limiting and life-threatening conditions are, how that data maps to service provision, and how we can ensure that their needs are better understood and met.

2.     Influence

Together for Short Lives, working with our members, will lead a movement for change to improve policy and practice in children’s palliative care. We will do this by confidently and proactively lobbying and campaigning for change for the betterment of children, families and those that support them.  The All Party Parliamentary Group for Children Who Need Palliative Care will be central to this.  We will lead campaigns on the issues that matter to families and our members, to support our strategic ambitions and help families and members to engage and influence politicians, policy makers and the media, locally and nationally. We will influence practice by developing pathways and guidance with and for professionals.  We will lead strategic programmes, funded and in partnership with others to inform, develop and deliver improvements across services by our members. 

3.     Support

Together for Short Lives will provide a central gateway for guidance, pathways and information for all those caring for and supporting children and families. We will be a port of call for families and professionals with questions about children’s palliative care, well positioned to signpost to further information and local support. We will develop our helpline, digital and face to face networks to support this, and we will build strong and collaborative networks across the sector, supporting specific sector needs under an umbrella of a joined-up approach to support. We will utilise networks and forums to achieve this.

4.     Voice

Together for Short Lives will listen to children, young people and families and to those that care for and support them. We will share their stories and speak up for them by leading and supporting awareness raising and fundraising campaigns and initiatives.  We will capture this voice and use it to influence policy and practice.  The voices of children, young people, families and all those who care for them will be central to all our campaigns.

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* 3. Please share any other thoughts or feedback you have about our draft strategy framework?

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* 4. If you would like, please tell us a little bit about yourself

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* 5. We may like to ask you follow up questions on your survey responses. If you would be willing for us to contact you for that purpose please enter your email address below.

Thank you for taking the time to share your thoughts with us – we really appreciate it. Do share our draft strategy framework and this survey with colleagues, supporters and stakeholders. You can keep in touch with our strategy development and all our work through Facebook /togetherforshortlives and Twitter @Tog4ShortLives or via our website at www.togetherforshortlives.org.uk 

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