New NHS children’s palliative care funding guide published

UK children’s charity Together for Short Lives has welcomed the publication of NHS England’s guide on its new approach to funding the clinical elements of children’s palliative care in England. However, it has warned that there is still a long way to go until families of children with life-limiting conditions can feel confident that all the lifeline services on which they rely are recognised and have the money they need from the NHS.

NHS England’s new funding approach is based on a ‘currency’. In simple terms, this a formula which describes for local planners and funders of healthcare (known as clinical commissioning groups, or CCGs) how the cost of providing children’s palliative care varies depending on:

  • the child’s age
  • the phase of their illness (stable, unstable, deteriorating or dying)
  • where the care is being provided (in a hospital, in a children’s hospice or at home).

The guide usefully advises CCGs that they should be funding children’s palliative care. Following Together for Short Lives’ work to help shape the guide, it also now refers to:

We are pleased that the guide also now recommends that while bereavement counselling does not form part of the currency model, commissioners should think about the excellent value that these services provide when they commission services.

However, CCGs will not be forced to implement the new currency or the guide. There are also a number of important omissions from the guide, including:

  • how progress on achieving the objectives of the currency will be measured
  • how non-clinical elements of children’s palliative care, such as short breaks for respite, will be funded
  • how voluntary sector providers can be supported to implement the systems they will need to collect data to make the new approach work.

Barbara Gelb OBE, Chief Executive of Together for Short Lives, said “I welcome this new guide, which could help CCGs to better understand the clinical elements of children’s palliative care and their responsibility for supporting these vital services. I also welcome the improvements which NHS England have made following the children’s palliative care sector’s work to help shape the new guide. It is an important opportunity to give CCGs the tools they need to help them understand and implement the various government NHS England policy initiatives which relate to children with life-limiting and life-threatening conditions, who have complex needs and who need palliative care.”

“However, we remain concerned that the guide does not fully reflect the holistic nature of children’s palliative care, given that short breaks for respite are omitted. It is vital that commissioners understand and adequately fund these services. As we come to terms with freeze in the Children’s Hospice Grant for 2017/18, government and NHS England still have much to do to make sure that children’s palliative care services receive equitable and sustainable funding from the state.”

Together for Short Lives will continue to press and work with government and NHS England to address these vital issues. We will also continue to work with our members to help them understand and implement the new currency and guide. The success test of the currency will be if it leads to a more equitable and sustainable system of funding for children’s palliative care. We will be asking CCGs and providers if this is happening at a number of points over the next 12 months.

You can read a blog from James Cooper, Together for Short Lives’ Public Affairs and Policy Manager, which considers in more detail what’s new about today’s development, and what’s still missing from the NHS’s children’s palliative care funding approach.

You can access information about the new currency and the associated guide here.

A report of NHS England’s work to test the new currency in 2015/16 is available here.

We describe the work which has taken place since 2010 to get to this point here.

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