Responding to the King’s Speech, Zillah Bingley, Chief Executive of Rainbow Trust Children’s Charity said:

As the country’s leading provider of children’s social palliative care, Rainbow Trust Children’s Charity welcomes the proposal of the NHS Modernisation Bill and the Education for All Bill. If well implemented, these Bills have the potential to cut bureaucracy, strengthen coordination and information sharing across the NHS, improve patient experience, and better support children and young people with special educational needs and disabilities (SEND). 

Families with a child with a life-threatening or terminal illness often experience fragmented or poorly coordinated support, while repeatedly having to share the same information during some of the most difficult periods of their lives.  

Digital integration and tools such as the NHS App could offer better joined up working and continuity of support and reduce the burden and stress on families. However, families must continue to receive sensitive communication directly from professionals, particularly around medical information and results. 

Virtually every child Rainbow Trust supports has some level of additional need relating to their education. Reforms must work in practice for children and families with complex needs, including those navigating SEND systems alongside a child with a life-threatening or terminal illness. They must not create an additional burden on families already struggling to cope. 

It is vital that holistic family support and children’s social palliative care alongside clinical care are not overlooked as reforms are developed. This critical care is forgotten in healthcare system planning leaving a gap in support and families having to cope alone. Rainbow Trust wants to see clear accountability for how services work together to support children with a life-threatening or terminal illness and their families, alongside stronger partnership working with the voluntary sector.