Katrina McNamara: Government action vital to improve children's palliative care

Out of hours children's palliative care services are vital to support the families of seriously ill children, yet a report by the charity Together for Short Lives reveals a lack of planning and funding for these services by clinical commissioning groups and local authorities in England

The report on the commissioning of children’s palliative care services in England, published in early November by the children's charity Together for Short Lives, makes challenging reading for those committed to providing quality of life and end of life care for children with life-limiting conditions.

Caring for a seriously ill child is not a nine to five job. What is most striking in the report is the disparity it reveals in the planning and funding of out of hours services compared with those offered within working hours on weekdays – community nursing teams are used by 93% of clinical commissioning groups (CCGs), but only 67% arrange such support out of hours and at weekends.

Isolated and vulnerable

Too often it is during the late, dark hours when a parent caring for a child with an unpredictable and highly complex condition feels most isolated and vulnerable. Good planning and daytime care are essential, but they don’t remove the need for out of hours services.

The report also highlights an inconsistency and lack of clarity about funding responsibilities and what families need, with only 4% of CCGs and 2% of local authorities aware of how many children with life-limiting and life-threatening conditions there are in their area.

I struggle to understand how you can plan, fund and monitor services if you don’t know the size and needs of the population for whom you have a responsibility to plan for and support. Funding and support is also often dependent on where you live rather than what you need. In this postcode lottery, the odds are stacked against such children and their families.

Political will is missing

The government made a welcome commitment to the strategic planning of children’s palliative care in the document Our Commitment to you for end of life care. Along with the Ambitions Framework and NICE guideline, we have firm foundations to improve children’s palliative care across England.

Investment in community nursing will bring benefits for children, families and the NHS. What is missing is the political will to deliver these commitments locally and to improve transparency and accountability.

For these children and their families time is short, and we cannot abdicate responsibility or defer to arguments about devolved decision making. The government must act now to make its commitments a reality.

Katrina McNamara is director of service development and improvement at Together for Short Lives