Today, I am proud to be hosting a Parliamentary reception on behalf of Together for Short Lives – the UK charity which speaks up #forthe49000 children and young people in the UK with life-limiting and life-threatening conditions. The event is part of the charity’s work to make sure that every one of these children and their families can access the lifeline palliative care that they need.
Having worked in children’s hospices before entering Parliament, I know first-hand how tirelessly staff and volunteers endeavour to provide palliative care when and where children need it. I have also seen the challenge of caring, 24/7 for a child with extremely complex needs, and the strain this places on families. Unlike most adults, many children will require palliative care for their whole lives.
The event also marks an important milestone for children with life-limiting conditions, with the launch of the first dedicated All-Party Parliamentary Group for Children Who Need Palliative Care. This is a significant and responds to a challenge for policy makers and commissioners – too often children and young people who need palliative care are treated like mini-adults – their voice and unique needs get lost in palliative care policy discussions which are often overtly focused on adults.
I believe that Parliament is at its best when it comes together to speak with one voice for the marginalised, the weakest and the most vulnerable. That is why I am joining Together for Short Lives and my fellow elected officers to call for MPs and peers to help shine a light on the 49,000 by joining this APPG and giving these children and their families a stronger voice in Parliament.
But this will not be a talking shop. I want us to engage and influence on the range of issues affecting seriously ill children, their families and the services they rely on. One of my first acts as Chair of the group is to undertake an inquiry into the funding and support for children’s palliative care.
This is not a partisan party issue, and I am looking forward to working with colleagues on all sides of the house to help bring about the best quality of life and best quality of death for children and young people with life-limiting conditions across the UK.
If you’d like to join us and be there for the 49,000 then please contact james.cooper@togetherforshortlives.org.uk
Follow the story via #forthe49000
Stuart Andrew is MP for Pudsey, Horsforth and Aireborough