Together for Short Lives & Dying Matters creating synergy. Myra Johnson Director of Communications

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1 Together for Short Lives & Dying Matters creating synergy Myra Johnson Director of Communications

2 Together for Short Lives who we are Together for Short Lives is the UK charity for all children with lifethreatening and life-limiting conditions and all those who support, love and care for them. We support families, professionals and services, including children s hospices. Our work helps to ensure that children can get the best possible care, wherever and whenever they need it.

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4 Children, young people and families are at the heart of our work How many children and young people do we represent? 49,000 children and young people in the UK living with a life-threatening or life-limiting condition which means that may not reach adulthood That s the equivalent of 1 in every 270 children 1 child in every school across the UK Enough to fill the Royal Albert Hall nearly 10 times

5 What we do Only UK children s palliative care charity An umbrella membership organisation We work with: Families 53 children s hospice services Specialist children s palliative care and disease specific charities Professionals doctors, nurses, social care, therapists, teachers Strategic alliances with charities like NCPC and Hospice UK Our vision: For children and young people in the UK with life-limiting and lifethreatening conditions and their families to have as fulfilling lives as possible, and the best care at the end of life. An ambitious 3 year strategy

6 We are there for families from diagnosis through to end of life and bereavement

7 Every journey will be different We are there for children & families for all their journey no matter how short Every story is unique 100s of different health conditions many only affect babies, child and young people Many are very rare, some have no name and unknown prognosis Families live with uncertainty many parents experience multiple deaths Some children will live for only days or even hours others will make the transition to adulthood A care pathway approach from diagnosis to end of life and into bereavement

8 Fulfilling lives and best care at end of life What they have in common is knowing that their baby their child will die before them. And there is no cure What we can do is support families throughout their journey so they have as fulfilling lives as possible and the best care at end of life And there are still many taboos about talking about children dying And lots of myths about children s hospices Families find it hard to face the reality that their child will die young Many families struggle to plan for their child s end of life but many who do say they had the best possible experience Together for Short Lives wants to change this

9 Our awareness raising agenda Delivering change for children and families Children s Hospice Week 2015 and Dying Matters

10 Children s Hospice Week May Established campaign over ten years experience The only UK wide children s palliative care campaign Takes place the week before Dying Matters week UK partnership campaign supported by 53 children s hospice services A week of fundraising and awareness raising activity Aims to: Raise national awareness of the needs of children with life-limiting and lifethreatening conditions and their families Improve public understanding of the range of services available to support families including children s hospice services Raise money for children s palliative care services Break down taboos about children s hospices

11 Children s Hospice Week themes: #ChildrensHospiceWeek Children s Hospice Week 2014 focused on the incredible around the clock care provided to seriously ill children by families, professionals, children s hospices and services across the UK with the #wecare247 Our 24 hour #wecare247 tweetathon was launched by patrons Simon Cowell and Holly Willoughby and reached nearly 20 million people. This year we will build on the successful We Care 24/7 theme Still finalising plans but will have a focus on showcasing the importance helping families make the most of their time together and creating lasting memories

12 How Children s Hospice Week and Dying Matters can work together Our theme will be based around making the most of time and creating lasting memories will enable us to capture some of the Dying Matters themes Sharing what life is really like the positive times and sad times and how children s hospices can help families make every second count We will do this by telling stories and moments in families and professionals day to day life As part of this we will touch on: Creating precious memories How children s hospices support children at the end of their life Bereavement support for siblings and family members The importance of families having choice in the place of care and place of death

13 Dying Matters members can engage too Follow us on to find out what s going on nationally and locally Use #ChildrensHospiceWeek Join our social media campaign share your moments, stories, photos and thoughts about children, young people with palliative care needs and their families Share how your service can make every moment count Talk to your local children s hospice about what they are doing Sign up for our free ebulletin for the latest news

14 You only die once Together for Short Lives will maximise the heightened awareness in Children s Hospice Week to launch activities for Dying Matters Week through PR and social media Keep people talking about children who are unlikely to reach adulthood We will continue to promote our work with NCPC around the theme of difficult conversations Use the you only die once theme to help professionals and families understand the value in thinking about end of life choices and plans before it s too late

15 Talk - Engage with communities to better understand children s palliative care - Encourage professionals to support each other to open up conversations with families and young people - Promote our Family Companion and End of Life information sheets to families and professionals - Encourage families to talk to our helpline or other professionals - Encourage people to listen to what families and young people want Plan - Explore choice of place of care and other options for end of life care - Discover how other families and young people have made their plans and how this feels Live - Make the most of every precious moment - Focus on how children s hospices and support services can help families create memories and make every day count - Sharing memory positive stories

16 For some families having an end of life plan can make a lasting difference I decided that people have birth plans so why not an end of life plan? Why shouldn t we have a plan of what we wanted to happen at the end of Sam s life? But at the time I was accused of wishing his life away, but I needed to know that whatever state I was in when he did die his funeral would be what we all wanted and we could concentrate on his remaining life knowing that plans were in place. Now I am thankful that I did do this. When you re sick and/or disabled, suddenly some people think it s ok to make decisions for you I am perfectly capable of making my own decisions. My decision, no matter what it may be, should be supported. Be it what clothes I want to wear, where I want to go or even down to things like whether I want to be kept alive by machines or if I choose not to have lifeprolonging treatment.

17 Thank you for listening Children s Hospice Week May 2015 Follow us on #ChildrensHospiceWeek e: jo.barrell@togetherforshortlives.org.uk