Today, I am hosting a parliamentary reception on behalf of Together for Short Lives – the UK charity for children with life-limiting and life-threatening conditions. The event is part of the charity’s campaign to secure an around the clock service for children who need palliative care.
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. Unlike most adults, many children will require palliative care for the whole lives.
I am proud to be speaking at today’s reception alongside Lizzie Hornby, who knows first-hand how challenging the system can be for parent carers of seriously children. Her son William has a complex and life-limiting condition called Edwards Syndrome.
Living with a life-limiting condition has a massive impact on the life of a child and their family. For parents, this means coordinating appointments with often dozens of professions, learning the skills they need to care for their child, and being available around the clock in case of an emergency. In too many areas there are no 24/7 community children’s palliative care services, which means that if their child becomes unwell, or their equipment fails, they face the perilous situation of rushing their child to hospital – which may not be the best place for them to be treated. Having an around the clock service available is crucial to making sure that these children are safe and would take some of the immense pressure off families.
However, there are a number of barriers preventing 24/7 children’s palliative care becoming a reality in the UK. Providing this service requires trained staff with the skills, knowledge and competencies to care for children with very complex conditions. In the UK there just aren’t enough staff trained to deliver this. Community children’s nurses are crucial and it is recommended that an average-sized district needs 20 such nurses. However, there were just 17 community children’s nurses due to qualify last year in the whole of the UK. Similar shortages can be found across the healthcare spectrum – the number of doctors training to specialise in paediatrics does not match those who are leaving the profession.
For commissioners, the number of children with life-limiting conditions is relatively small, which means that clinical commissioning groups and local authorities struggle to create economies of scale and commission children’s palliative care effectively. We need them to start working together to assess the number of these seriously ill children within their local area and commission services for them.
It is time that we stand up for children with life-limiting conditions and the inspirational families and staff who care and support them. It is time that we invest in a workforce and services that can truly deliver 24/7 children’s palliative care. That is why I support #carearoundtheclock and I urge my fellow MPs to do so as well.
Stuart Andrew is MP for Pudsey, Horsforth & Aireborough
