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Much more to do to realise government choice commitment

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Houses of Parliament

UK children’s palliative care charity Together for Short Lives has welcomed progress highlighted by ministers today (21 September) in improving choice for children in England who need palliative care and their families.

However, it has called on the government, NHS England, clinical commissioning groups and local authorities to work with the charity to do more to bring about better outcomes for the 40,000 babies, children and young people in England with life-limiting and life-threatening conditions.

The government’s ‘One Year On’ report gives an update on progress made in realising its response to the end of life care choice review. It rightly cites the National Institute for Health and Care Excellence’s (NICE) guideline End of Life Care for Infants, Children and Young People: Planning and Management, published in December, as an important step forward. The guideline sets out how children and their families should play an active role in discussions about their care; it also states that, where possible, a child should receive palliative care, including end of life care, in the place they choose. The guideline describes how care should be joined up by managed clinical networks (MCNs) of children’s palliative care professionals operating across England.

NICE has also recently published a quality standard on the same topic, which is another important guide to help the NHS, voluntary and private sectors to better plan, fund and provide children’s palliative care.

The ‘One Year On’ report also reiterates the government’s commitment to improve bereavement services for families whose child has died. This includes the introduction of a new entitlement to bereavement leave for parents, a policy which Together for Short Lives campaigned for and will help to support families during this incredibly distressing time.

Commenting on the new report, Barbara Gelb OBE, Chief Executive of Together for Short Lives said:

“I was delighted when the government extended the end of life choice commitment to include children and young people. I agree that much has been achieved since the government’s response to the end of life care choice review last year and I welcome the opportunities which Together for Short Lives has been given to work with ministers and officials to improve the way in which children’s palliative care is planned, funded and provided. However, more work is still needed for the 40,000 children in England with life-limiting conditions and their families to be able to access high quality palliative care how and where they choose. Sadly, our research shows that the extent to which children and families are able to exercise these choices is a postcode lottery.”

In too many instances, this postcode lottery exists because of unjustifiably different local approaches to planning and funding children’s palliative care: for example, over a quarter of CCGs do not commission community children’s nursing for children with life-limiting conditions out of hours and at weekends. There is an 11% vacancy rate for children’s hospice nursing posts across the UK. This means that too many seriously ill children may need to be admitted to hospital if their condition deteriorates rapidly, rather than receive palliative care in the community if that is what they choose. Choice is also hindered by the way in which services are funded: a 61% cut in the amount of money allocated by local authorities to voluntary sector providers of children’s palliative care between 2014/15 and 2015/16 means that some have had to restrict the social care they can offer to children with life-limiting conditions.

Barbara Gelb said: “I ask the government and NHS England to work with us to realise meaningful choice for children and families, including by making clear to CCGs and councils that they are responsible for planning and funding children’s palliative care. This should be done in a way which is consistent with the NICE clinical guideline and quality standard. I also ask the government to hold commissioners to account to make sure that children’s palliative care is funded equitably and sustainably in every community across England.

“Health workforce planners need a strategy for making sure there are enough doctors and nurses available to provide children’s palliative care. We believe that NHS England should increase the Children’s Hospice Grant to £25million per year to reflect the growing demand for this care. Together for Short Lives will be playing our part by publishing updated versions of our guide to children’s palliative care and our guide to jointly commissioning it in the autumn.”

NICE calculate that by investing £12.7million in implementing its guideline, non-cash savings worth £34.7million would be released back into the NHS in England.

This report is published as the All-Party Parliamentary Group for Children Who Need Palliative Care prepares to launch its own inquiry into how well the government is meeting its end of life choice commitment growing number of children and young people with life limiting and life-threatening conditions.

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