Speaking today, about the Written Ministerial Statement, “Modern Service Framework for Palliative Care and End-of-Life Care: interim update”, Zillah Bingley, Chief Executive, Rainbow Trust Children’s Charity, said: 
 

As a leading provider of social care to terminally ill children and their families Rainbow Trust Children's Charity welcomes the Government's continued commitment to improving palliative and end-of-life care through the Modern Service Framework.  

We are pleased to see the strong focus on reducing inequalities, improving access to care closer to home, and recognising the important contribution of the voluntary sector alongside NHS and social care services. We are also encouraged by the recognition that babies, children and young people have distinct needs, and the commitment to develop separate outcome measures for this group. 

For families with a child who has a life-threatening or terminal illness, high-quality palliative care is about much more than clinical care alone. 

We see first-hand the vital role that hospices play in supporting children, young people and families, but they are just one part of a much wider palliative care voluntary sector. For families with a child who has a life-threatening or terminal illness, palliative care is not only about managing symptoms. Families also need practical help, emotional support, support for parents and siblings, and help navigating the challenges that a life-threatening or terminal illness brings. Community services, social care and specialist voluntary sector organisations all have an important role to play in providing that care. 

While the Statement about the framework sets out an ambitious vision for improving palliative and end-of-life care, one of the two specific commissioning actions announced relates to sustainable contracting for hospice services. As the framework develops, we would like to see local commissioning arrangements reflect the full range of voluntary sector services that support children and families, particularly as demand for children's palliative care and family support continues to grow. 

The framework rightly recognises the voluntary sector and the importance of partnership working. The success of the framework will ultimately depend on how local systems translate these ambitions into consistent and equitable commissioning decisions and how progress is measured. 

We look forward to continuing to contribute to the ongoing discussions and work with Government and partners to help ensure that every child and family receives the care and support they need, when and where they need it.