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New research from TfSL raises concerns about availability of palliative care

Author: Suzanne Stevenson
13 November 2017

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 according to new research by UK charity Together for Short Lives (TfSL).

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.

Caring for a child with a life limiting or life-threatening condition is a 24 hour, seven days a week job.When this care is not in place, families are forced to go to A&E at night and at weekends, at great expense to the NHS says TfSL.

The research 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.

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.

The research found that:

  • 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."

Commenting on the research, Tracey Bleakley, Chief Executive of Hospice UK, said: 

“The findings of this research show some deeply concerning deficits in the availability of 24/7 palliative care for babies, children and young people with life-limiting conditions in parts of England.

“Not only does this lack of community services cause considerable disruption and distress for families with repeat visits to hospital, it also places additional financial strain on hospitals which are already buckling under huge demand.

“The Government has made clear in its national commitment on end of life care that community-based palliative care services must be in place to support all families. This research is a sharp reminder to commissioners that they need to do more at a local level to deliver this.”

A copy of the research can be found on the Together for Short Lives website.

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