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Most vulnerable families failed in community care postcode lottery

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New research published today (12 November) by UK charity Together for Short Lives shows that only a third (35%) of local NHS planning and funding organisations (CCGs) in England are implementing a government commitment which says that the NHS must prioritise palliative care for babies, children and young people.

Caring for a child with a life limiting or life-threatening condition is a 24 hour, seven days a week job – children are not ill on a convenient 9 till 5 basis. Despite the government’s choice commitment, in one third (33%) of CCGs do not plan and fund community children’s nurses to provide palliative care for seriously ill children out of hours and at weekends.


When this care isn’t in place, families are forced to go to A&E at night and at weekends, at great expense to the NHS.

New maps produced by the charity show that whether seriously ill children can access this support depends entirely on where in England they live rather than what they need.

Families of babies, children and young people across England with life-limiting and life-threatening conditions are being denied the out of hours care and support they need, research by UK charity Together for Short Lives has found. There are more than 40,000 children with these conditions in England and many of them require care 24 hours a day, seven days a week.

The findings have been uncovered by Together for Short Lives following a series of freedom of information (FOI) requests made of NHS clinical commissioning groups (CCG) and local authorities in England. The FOIs sought to find out how each area of England is planning and funding (a process called commissioning) care for children who need palliative care.

Round the clock children’s palliative care, which is often highly complex, is largely provided to seriously ill children at home, by their families, with the support of professionals such as community children’s nurses and community paediatricians. Families are more likely to be able to cope if their child’s condition deteriorates suddenly, or if a vital piece of equipment, like a ventilator, fails, when they are able to call on these community services during the night and at weekends. When these services are not in place, families have little option but to call an ambulance or take their child to their local accident and emergency, at great and unnecessary expense to the taxpayer.

Yet Together for Short Lives’ research shows that families face postcode lottery of support across England and that many families cannot access the community children’s palliative care they need out of hours and at weekends – caring for these children is not a 9 till 5 job:

  • While 93% of CCGs commission community children’s nursing teams, just two-thirds (67%) commission them to provide care out of hours and at weekends.
  • Although 63% of CCGs commission services to provide community paediatricians, only 29% commission them to provide out of hours and weekend care.
  • While nearly all (95%) of CCGs commission equipment services for children with life-limiting conditions, just over half (52%) commission them out of hours and at weekends.

In its response to the ‘Choice in End of Life Care Review’, the government stated that children should be cared for at home, where possible, and that community-based services should be in place to support their family. Despite this, Together for Short Lives’ research shows that only a third (35%) of CCGs are implementing the government’s end of life care choice commitment for children. A further 19% stated that their plans to do so are in development. This means that nearly half (46%) of CCGs have no plans to meet the choice commitment.

To change this, Together for Short Lives is calling on the government to undertake a review of the children’s palliative care currently available to children with life-limiting conditions in England as a matter of urgency. The charity is asking the public to write to their local MP to ask them to press ministers to take this action. It is also asking CCGs and local authorities to recognise the importance of out of hours support for families who have a child with a life-limiting or life-threatening condition and to meet the Government’s end of life choice commitment. Together for Short Lives makes an open offer to help these organisations plan and fund this care, using the charity’s joint commissioning resource as a guide.

Barbara Gelb OBE, Chief Executive of Together for Short Lives said:

“Given the Government’s positive commitment to choice in end of life care, these findings are desperately disappointing. They suggest that this commitment is being ignored across the country by clinical commissioning groups. As a result many families have no choice because the 24/7 services, on which they depend, are not being funded or supported. Positive commitments nationally are being ignored in practice locally. This leaves the most vulnerable children and families without the support they need in their most challenging hours.”

“It is not a 9 – 5 job: a child’s condition can deteriorate very quickly, and being able to call on a community service in the middle of the night is crucial to help families cope at these times. In too many places across England, this support is being denied to families. This leads to unnecessary hospital trips which are distressing for children and their families, and which are massively expensive for our already overstretched NHS. We urge the government to undertake a review of the children’s palliative care available to children with life-limiting and life-threatening conditions as a matter of urgency. We ask CCGs and local authorities to work with us to commission these services appropriately – including out of hours.”

You can access a full report of Together for Short Lives’ findings here. This includes all the questions CCGs and local authorities were asked as an appendix.

You can access the spreadsheets which were used to analyse the findings from the CCG and local authority FOIs here.

Join our campaign

We want the government to undertake a review of the children’s palliative care currently available to children with life-limiting conditions in England as a matter of urgency.

To help us with this, please email your local MP to share our research using this template.

You can find your MP’s email address here.

Help us to do more

Together for Short Lives is a charity and relies on donations to continue our work to speak out for children and young people who are expected to have short lives. To help us with this work, please consider donating using the link below.

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