Improving Children’s Palliative Care Engagement in the Reform of Special Educational Needs and Disability

The SEND reforms have the potential to transform the lives of the 40,000 children and young people with life-limiting and life-threatening conditions and their families in England who may use palliative care services. Their need for integrated care is perhaps the most challenging and urgent of any cohort of children, given the complexity of the care required and the pressure of time.

However, evidence from the Pathfinder programme suggests that there is a very real danger that these children, families and services will miss out on the benefits of greater integration promised by the SEND reforms. The interim evaluation, conducted by SQW, clearly identifies two key challenges which have inhibited progress in the Pathfinder areas:

Poor representation from health agencies.
Uncertainty about the role the voluntary sector could and should pay.

This project seeks to address these two challenges working with voluntary sector children’s hospice and palliative care providers in all 20 Pathfinder areas. Together for Short Lives aims to deliver on three key outcomes, namely that:

Children and young people with life-limiting and life-threatening conditions are included in Pathfinder testing and benefit from greater integration.
Children’s hospice and palliative care providers play an active role in supporting Pathfinders and in the delivery of the reforms.
Schools and health and social care services are better equipped to support children with life-limiting conditions.

They hope the project will contribute to improving understanding of the needs of children with life-limiting and life-threatening conditions in Pathfinder areas, so that they are included in the testing of the reforms. This includes children who need palliative care being involved in the piloting of the EHC plans and personal budgets. School resources will be designed to improve awareness of the needs of these children, so that they are better supported in school and can benefit from education.

In the longer term, Together for Short Lives envisages that the project will help to better embed children’s palliative care in Local Offers, a key component of the SEND reform designed to highlight the support available to children and families locally.

Read the full Briefing on the Together for Short Lives website