Dreams Come True

Seriously ill children face a postcode lottery of support

Seriously ill children face a postcode lottery of support

  • 4 out of 5 local authorities are failing to plan and fund care for seriously children and young people
  • Local authorities have a legal duty to provide short breaks for disabled children yet still around 1 in 7 are failing to commission these services
  • Despite government guidance, 5% of clinical commissioning groups refuse to commission children's hospices to provide care because they are charities
  • An interactive map allows the public to see how their local authority and clinical commissioning group is performing with a new rating system

During Children’s Hospice Week Together for Short Lives is working with MPs to raise awareness of the challenges facing children with life-shortening conditions across the UK.

We are bringing together MPs with families caring for children with life-shortening conditions, and professionals working in children’s palliative care to help them to better understand the obstacles facing these children. 

All Party Health Group

Today, we are in Parliament with the All Party Health Group, who are running a special meeting to discuss how we can work together and what needs to be done ensure all children have high-quality children’s palliative care. We will be joined by MPs, parent carers, children’s nurses and service providers – all of whom want to see the lives of children-with life-shortening conditions improved.

#ChildrensHospiceWeek

MPs from all parties have taken to Twitter to show their support for Children’s Hospice Week and for their local services providing a lifeline to children and their families, using the hashtag #ChildrensHospiceWeek. Many politicians have also shared photos of themselves alongside a poster for Together for Short Lives’ helpline service, which was sent to every MP’s constituency office in the UK. We are encouraging them to make this poster visible to local families and to signpost them towards the helpline if they need information or support.

Early Day Motion

A cross-party group of MPs led by Mark Tami MP have also signed an Early Day Motion – a way of publicly declaring support for a cause – in support of Children’s Hospice Week. The motion formally ‘recognises the huge contribution that hospices and children's palliative care charities play in supporting the most vulnerable children and their families’. Together for Short Lives will be arranging meetings with those who sign the motion in order to work together to improve the lives of children with life-shortening conditions.

Parliamentary debate

One such opportunity to raise awareness of the challenges facing these children – and their families – is the upcoming ‘Support for Children and young people with life-shortening conditions’ debate, which will be held in Parliament on 7 June from 9.30am-11am. Together for Short Lives will be issuing a briefing to all MPs attending the debate, highlighting what we can do to improve children’s palliative care.

How you can help

We are urging as many MPs as possible to sign-up for our campaign and support us in Parliament. You can help us by emailing your local MP and urging them to join in the activities listed above. To do so enter your postcode at www.writetothem.com to write to your local MP.

Media enquiries:

Shaun Walsh | Executive Director of External Relations | Together for Short Lives
Mobile 07506 211 765 | shaun.walsh@togetherforshortlives.org.uk |

Myra Johnson | Director of Communications and Engagement | Together for Short Lives

Tel 0117 989 7820 Ext 225 | Mobile 07775 336 460 | myra.johnson@togetherforshortlives.org.uk

Twitter: @Tog4ShortLives

Facebook: /togetherforshortlives


Date: 30/05/2016
Author: Together For Short Lives
Source: Dreams Come True




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