Children's palliative care blueprint for the next parliament

On Tuesday 19 November, Together for Short Lives will urge MPs to adopt eight priorities for their parties’ General Election manifestos that, if implemented, would  transform children’s palliative care in the UK. At a parliamentary reception event at Westminster, the UK’s leading children’s palliative care charity will outline a blueprint for the next Parliament that would significantly improve the lives children with life limiting conditions and their families. 

Barbara Gelb, Chief Executive of Together for Short Lives, said, “today marks a unique opportunity for politicians of all persuasions to understand how policy needs to change in order to improve the lives of children who have life-limiting conditions and their families.  Well commissioned and co-ordinated palliative care helps families make the most of their time together, enables services to develop to meet their needs and reduces emergency admissions and stays in hospital. We must seize this opportunity so that children and families can live better lives and the services that care for them face a more sustainable future. We urge all parties to adopt our priorities as they consider their manifestos for 2015 and beyond.”

The priorities for the next Parliament have been developed with direct input from young people who need palliative care, as well as their families and the professionals and services that support them.

Rotherham MP Sarah Champion, a former chief executive of Bluebell Wood Children’s Hospice is co-hosting the event. Sarah said, “In my experience of working with this group of children – and despite these families being some of the most in need in the UK – many are still not getting the help and support they require. While services offer a day to day lifeline to families, many of the challenges they face can only be addressed by changes to policy, nationally and locally.”

Pudsey MP Stuart Andrew, a former children’s hospice fundraiser and co-host of the reception, said, “Having spent time working in the children’s palliative care sector, I know that there are some wonderful and committed professionals across the country. Nurses, doctors, family and sibling workers, care assistants, social workers, bereavement councillors, play and music therapists to name a few. They work in some inspirational places - in the family home, in hospitals, community settings and in the UK’s 49 children’s hospices. It’s important that Governments of all political colours support them in this vital work.”

At the Westminster event, MPs will hear from Lucy Watts, a young woman with Ehlers-Danlos Syndrome.  Lucy will speak about her experience of living with a life-limiting condition. Dr Daniel Poulter MP, Parliamentary Under-Secretary of State for Health, will also speak about the work the Government is doing to support children with life-threatening and life-limiting conditions.

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