What will integrated care systems offer children’s palliative care?

Together for Short Lives fears that 24/7 end of life care for seriously ill children could remain a postcode lottery with integrated care systems

Integrated care systems (ICSs) – part of the the plan to reorganise health and social care in England – become statutory bodies from July.

Already there are fears about what the reorganisation will mean for specialist areas, such as children’s palliative care.

There are 42 ICSs in England, made up of boards and partnerships, and clinical commissioning groups are being abolished.

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The idea for the ICSs, which goes back to 2019’s NHS Long Term Plan, is to pool resources between health and local councils, involve third sector organisations and encourage partnership working.

The charity Together for Short Lives says seriously ill children and their families face a ‘postcode lottery’ for what should be 24/7 end of life care provision.

Funding gap in children’s palliative care

It says 79% of ICS areas are failing to give children with life-limiting and life-threatening conditions the choice to die at home, and are therefore failing to meet National Institute for Health and Care Excellence standards.

Together for Short Lives also estimates that the annual funding gap to train palliative medicine consultants and hire more children’s nurses is £2.26 million. There is also a £301m shortfall in spending on children’s palliative care overall.

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Together for Short Lives is also encouraging people to sign an open letter to prime minister Boris Johnson. This closes on 11 July.

The charity’s chief executive Andy Fletcher explains: ‘These families are supported by some brilliant children's palliative care services and professionals, in hospitals, in children’s hospices and at home. But many of these services are stretched to breaking point, neither commissioned nor consistently funded by NHS and local authorities.

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‘It’s shocking that many families facing the heartbreak of their child dying young have little choice in their child’s end of life.’

I agree.

References

• National Institute for Health and Care Excellence (2017) End of Life Care for Infants, Children and Young People
• NHS (2019) NHS Long Term Care Plan
• Together for Short Lives (2022) 24/7 Access to Children’s Palliative Care in England
• Together for Short Lives (2022) 24/7 Access to Children’s Palliative Care in England #EveryDayEveryNight

Christine Walker is editor, Nursing Children and Young People