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End of life care: strengthening choice

An inquiry report by the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care

49,000 babies, children and young people are living in the UK with health conditions that are life-limiting or life-threatening and the number is rising: 40,000 live in England alone.

Hearing the news that your child has a life-limiting condition and is likely to die young is devastating. It’s an incredibly distressing and confusing time. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.

Families have to cope with the knowledge that their child will die before them, and daily life for the whole family can become challenging. Although there are many excellent services helping them, many families still have difficulties accessing the care and support they need.

Children with life-limiting conditions need palliative care from the point at which their condition is diagnosed or recognised until the end of their lives. Families also need care and support throughout the trajectory of their child’s illness, including bereavement care after they have died. Palliative care for children includes, but is not limited to, end of life care, and the two terms should not be used interchangeably.

These children and their families rely on palliative care provided in hospital, children’s hospices and in the community, by the statutory and voluntary sectors. Children’s palliative care providers offer a range of services, including supporting families to manage their children’s pain and distressing symptoms, providing children and their families with life-line short breaks and offering bereavement support both before and after the child has died.

Families want to be able to choose where they receive the lifeline children’s palliative care services that they rely on, when they need and want them. They also want to choose who cares for their child and which treatments they receive. However, the extent to which children and their families can access the palliative care they need – and make meaningful choices about how and where they receive it – varies considerably across England.

As the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, we seek to educate, inform and motivate Parliamentarians to take action to help transform the lives of children and young people across the UK with life-limiting and life-threatening conditions. We are supported to do so by our secretariat, Together for Short Lives, the UK’s leading charity for the 49,000 children living with life-limiting conditions, and their families.

Through our inquiry, we have been examining the extent to which the government is meeting its end of life care choice commitment for the 40,000 babies, children and young people in England with life-limiting and life-limiting conditions. In doing so, we have examined how children’s palliative care is provided in other parts of the UK.

We have identified a number of challenges which, if not quickly met by the government, will threaten ministers’ ability to meet their end of life care choice commitment for children by 2020. We urge the government to work with us to implement the recommendations we make.