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Enough sticking plasters – it is time for a long term funding solution for seriously ill children and their families

News and comment

Announcing this week’s fast-tracked government Spending Round for 2020/21 Sajid Javid, the Chancellor of the Exchequer, promised to “clear the ground ahead of Brexit” while delivering on people’s priorities of schools, policing, health and defence. For seriously ill children and their families, the priorities are clear: children’s palliative care services in hospitals, homes and hospices, sustainably funded by the NHS and local authorities.

Good progress has been made on this vital area during 2019. Together for Short Lives welcomed NHS England’s decision to recognise children’s palliative care as an “important priority” in the NHS Long Term Plan. We also welcomed the commitment to match fund the amount of additional money that clinical commissioning groups (CCGs) invest in local children’s palliative care services, up to a value of £7million. NHS England’s subsequent commitment to also increase the vital Children’s Hospice Grant to £25million by 2023/24 has potential to make NHS funding for children’s hospices more equitable and sustainably.

But all these are short term solutions to a long term and system wide problem. They are announced with great fanfare and welcomed by people like me. But the truth is they are not enough. If NHS England is to deliver on its commitment to make children’s palliative and end of life care an important priority, a broader strategy is needed to tackle three key challenges faced by the sector.

First, the Spending Round must address NHS shortfalls in children’s palliative care funding across hospitals, children’s hospice and at home. While the £7 million match funding is welcome, more funding is needed to make sure that CCGs can equitably and sustainably fund palliative care when and where children and families need it, in a way which is consistent with the government’s end of life care choice commitment.

If we are to judge our society on how it supports the most vulnerable and in need, then we urgently need an end to the sticking plaster approach.

Second, government must meet the £434 million gap in local authority budgets for social care for disabled children, including support at home. Short breaks for respite relieve some of the severe pressure families of children with life-limiting conditions face, but at present more than one in five local authorities are failing to meet their legal duty to commission short breaks for disabled children with life-limiting and life-threatening conditions.

Third, recent research compiled by the All-Party Parliamentary Group for Children Who Need Palliative Care found that there are too few professionals with the skills, knowledge and experience needed to provide children’s palliative care in hospitals, children’s hospices and in the community. In some cases this is having a detrimental impact on the level of service available to children and families.

Urgent action is needed to assess the shortfall in children’s palliative care workforce and develop a strategy, with Health Education England and the Council of Deans for Health, to address gaps in training and education to ensure a robust workforce. We call on the government make sure that Health Education England has the resources it needs to assess and meet the gaps in the workforce needed to provide palliative care to children with life-limiting and life-threatening conditions.

Regardless of how this phase of Brexit is resolved – if it is resolved – after 31 October seriously ill children and their families will still need lifeline palliative care across a range of settings, available throughout the day and night. They, and the professionals and services which support them, deserve a long term, properly funded approach which meets the commitments already laid down by Government. If we are to judge our society on how it supports the most vulnerable and in need, then we urgently need an end to the sticking plaster approach. We will be watching the Chancellor’s review with interest.

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