Gale calls on ministers to meet their commitment to dying children

October 12th 2018

North Thanet`s MP Sir Roger Gale has given his support to a report by a cross-party group of MPs and peers which has revealed that England’s most vulnerable children are not able to access the full range of care and support that the government has committed to.

Babies, children and young-people with life-limiting conditions are likely to die young. They and their families need a spectrum of health and social care services to meet their often complex needs. The All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care has been examining the extent to which the government is meeting its end of life care choice commitment1 to these seriously ill children and their families.

Despite the commitment – which outlines six ways ministers believe that people approaching the end of their lives should be supported – the APPG has heard evidence from young-people, families, services and professionals that the quality of palliative care children and families can access is patchy and depends on where in England they live. MPs and peers state that this is unfair and represents a wholly unjustified health inequality. The APPG’s report, End of life care: strengthening choice (published 21 October 2018), highlights five areas of particular concern, where many children and their families have limited access to:

  • children’s palliative care out of hours and at weekends

  • short breaks for respite

  • age-appropriate palliative care and smooth transitions to adult services

  • specialist children’s palliative care teams led by Level 4 consultants

  • advance care planning

The APPG has identified five areas in which it wants the government to take urgent action. It would like to see ministers to take action on:

  • leadership and accountability

  • clarity for those who plan and fund (commission) children’s palliative care

  • funding

  • workforce

  • integration.

 

Sir Roger has said:

“By planning and funding children’s palliative care well we not only improve outcomes for children with life-limiting conditions and their families, but we also help prevent costly, emergency hospital admissions when they hit crisis point. There are some fantastic children’s palliative care services who serve children and families in Kent, like Demelza House. Sadly, however, this report has shown is that too often we are failing some of England’s most vulnerable children by providing patchy access to crucial services such as advance care planning, specialist services, and short breaks for respite.

“The NHS 10-year plan offers an unmissable opportunity to put this right. I now call on ministers to work closely with the APPG to implement the recommendations they make, and ensure every family is receiving the level of care committed to in the government’s end of life care commitment.”

Andy Fletcher, Chief Executive of children’s palliative care charity Together for Short Lives, which supported the APPG to research and write the report, said:

“Children who have life-limiting conditions and their families don’t have any time to waste. They need the support and services to allow them to make the most of their time together – without this lifeline support their lives can become even more difficult. We support the recommendations of the APPG, and ask Theresa May and her ministers to fulfil the commitments they have made around children’s palliative care.”

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