Together for Short Lives
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Securing bereavement care for children and their families

Palliative care for children with life-limiting and life-threatening conditions is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. This includes bereavement support for the whole family, including siblings. We are concerned that this vital care and support is being planned and funded by too few NHS organisations and local authorities in England. We want the UK Government to hold these organisations to account in implementing National Institute for Health and Care Excellence (NICE) guidance on bereavement care.

Why bereavement care is vital for children and families

The NICE guideline NG61 ‘End of life care for infants, children and young people with life-limiting conditions’ stipulates that when a child or young person is approaching the end of their life, professionals should take to parents or carers about available bereavement support groups. It also states that families should be offered bereavement support from a professional with appropriate expertise both before and after the death of a child or young person.

What do we know about the way in which bereavement care is planned and funded?

Together for Short Lives own research found that:

  • Although most CCGs (85%) responded that they commission services that provide emotional and psychological support for children and families, just 47% commission services that can provide this care out of hours.
  • The figures for local authorities are far lower. Just a third (34%) of local authorities commission services to provide this care, while fewer than a quarter (23%) commission services to provide this out of hours.
  • The NICE guideline recommends that bereavement support should be offered ‘from a professional with appropriate expertise to the parents or carers both before and after the death of a child or young person.’ Of the CCGs that responded to our FOI request, one in five (19%) do not offer this support, while nearly half (45%) do not offer this out of hours.
  • Only 28% of local authorities offer this support, while just 18% can offer this out of hours.
  • The proportion of CCGs that can offer bereavement care after a child or young person has died is slightly higher than those that can offer it before they have died (83%). However, only 55% can offer this care out of hours.
  • For local authorities, the figures are identical to those for bereavement care before a child or young person has died – 28% during ‘normal working hours’ and just 18% out of hours.

What would Together for Short Lives like to change?

We would like to see:

  1. All families of children who have life-limiting or life-threatening conditions to be offered the bereavement support that they need.
  2. All CCGs in England to implement the new NICE ‘End of life care for infants, children and young people with life-limiting conditions’ guidance in full and to commission bereavement services which parents whose child has died can access.
Policy and influencing