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Strengthening choice for some of England’s most vulnerable children

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Hearing the news that your child has a life-limiting condition and is likely to die young is devastating. Not only do families have to cope with the knowledge that their child will die before them, but day-to-day life can become incredibly challenging. That is why it is vital that these children, some of the most vulnerable in our society, have access to the full range of care that the government has committed to provide.

There are 49,000 babies, children and young people 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. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.

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.

In July 2015, the government published ‘Our Commitment to You for End of Life Care’. This set out what ministers expect commissioners to achieve for babies, children and young people with life-limiting and life-threatening conditions. The guidance includes a number of commitments on services such as respite care, bereavement support, the prioritisation of children’s palliative care in commissioners’ strategic planning, and collaboration between different clinical and non-clinical services.

We are the Co-Chairs of the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, a cross-party group at Westminster. We seek to educate, inform and motivate other parliamentarians to take action to transform the lives of children and young people across the UK with life-limiting and life-threatening conditions.

Over the past year, supported by the UK children’s palliative care charity Together for Short Lives, we have conducted an inquiry into the extent to which the government is meeting its end of life care choice commitment for babies, children and young people.

Throughout our inquiry, we have sought evidence from children with life-limiting conditions, their families, and professionals working in children’s palliative care to understand to what extent the government is meeting its end of life care commitment for the 40,000 babies, children and young people in England with life-limiting and life-threatening conditions.

Despite some promising steps acknowledged in the government’s ‘One Year On’ report, the APPG inquiry has revealed a number of challenges which, if not proactively tackled by the government, will threaten ministers’ ability to meet their end of life care choice commitment for children by 2020.

The reality is that the quality of palliative care that children and families can access is patchy and depends on where in England they live. This is limiting the choices they can make about the palliative care they need. It is also unfair and represents a wholly unjustified health inequality. We want to see an increase in children’s palliative care funding and for the government’s end of life care commitment to be included as a priority in the NHS’s new 10-year plan.

Children’s palliative care is not a partisan, political issue, which is why MPs and peers from across the parties have come together to raise these important challenges with ministers. They are so critical for these vulnerable families who, so often hidden from view, need the end of life care commitment to be realised to give them the choice and control they deserve in their lives. We now urge the government to work with us to implement our recommendations.

Dr Caroline Johnson MP and Catherine McKinnell MP are Co-Chairs of the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care. Dr Johnson is also a Consultant Paediatrician.

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