The recent media coverage of Charlie Gard has given rise to heightened interest and discussion about children's palliative care (both here and abroad). The case has created a high level of public consciousness, but sadly this has also led to a lot of misunderstanding or misrepresentation of children's palliative care by some. The nature of the debate, at times, has been ill-informed and unhelpful to everyone and the abuse aimed at the staff at Great Ormond Street and Charlie Gard's family, shames us as a nation. There must be time for us to reflect on this and learn, remembering that everyone involved in this case had Charlie's best interest at heart - Melanie Phillips writes powerfully about this here.
Initially, for many families, the mere mention of 'palliative care' may cause despair, and may feel like giving up. Sadly, media coverage often confounds this fear - talking about families that 'only have', or are 'just left with palliative care.' Together for Short Lives felt it important to change this narrative. Children's palliative care is never about giving up or stopping care.
As the UK voice for children with life-limiting conditions and their families we wanted to challenge some of the misconceptions being reported about children's palliative care and children's hospices. We have engaged with the media directly, briefing journalists and undertaking a number of interviews and supporting others to do so. Part of this work was to produce a media briefing, to help support accurate reporting around children's palliative care.
We also called for calm - to give the family space at this most heart-breaking time. But also recognising that many of the 49,000 children and young people across the UK with life-limiting and life-threatening conditions may have been following this this case from a very distressing place. At this time of heightened attention, we're aware that many families, as well as professionals caring for seriously ill children, may be impacted. We have worked to ensure that our helpline, our tools and resources were clearly available to those who needed them.
We are here to give voice and support, but the most important voices are always families'. Families sharing their own experiences, providing greater public understanding about how children's palliative care is an active approach and is not about giving up.
Two families shared their experiences here:
Together for Short Lives is here for the 49,000. This week, we continued in this role by writing an open letter to the Prime Minister. The letter explains that we can only improve choice and support for families if services are adequately supported, integrated and funded. There is an opportunity for the Prime Minister to respond to the challenges faced by the 49,000 - we hope she will listen to these, the weakest, most vulnerable voices so that we can improve the quality of life and end of life care, however short that might be.