The UK government must level up for children who need palliative care

Categories: Care, Featured, In The Media, Leadership, and Opinion.

Author: Andy Fletcher – Chief Executive – Together for Short Lives 

The government has used the Queen’s Speech to set out a plan to build back better from the pandemic. If it is serious in doing so in a way that levels our society up for all, then it must address the glaring inequalities experienced by children who need palliative care. Care and support for these families already varied inexplicably before the pandemic. COVID-19 has only exacerbated the problem, leaving seriously ill children and parents anxious, isolated and without many of the lifeline services they previously relied on.

Many of the challenges that families faced when the Conservatives won their landmark 2019 general election victory remain. Whether or not children and families can choose to access palliative care, including end of life care, at home out of hours and at weekends, depends on where they live. Too few children’s palliative care services are sustainably planned, funded or staffed. Parents and families struggle to access much needed short breaks for respite due to a £434 million funding gap that exists for local authorities. Assessments and plans are rarely joined up around children and families and anomalies in the benefits system mean that some families miss out on crucial financial support.

If this was not challenging enough, COVID has heaped even further pressure on families. Most caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the coronavirus pandemic, with some parents describing that they feel like a “forgotten group”. The lockdowns have had a devastating impact: too many seriously ill children have not been receiving support for their disability or their medical condition via health services or school. This has had detrimental impacts on their children’s disabilities during a time of reduced levels of support at home during the pandemic.

The result is that seriously ill children and families are missing out on the care and support they need, when and where they need it. A significant number need unplanned, prolonged emergency hospital admissions, when their needs could potentially have been met elsewhere. As a result, the NHS is failing to achieve non-cash savings in the resources it spends on these children and their families.

Together for Short Lives welcomes existing commitments from NHS England and NHS Improvement (NHSE/I) to increase the Children’s Hospice Grant to £25 million per year by 2023/24. Up to £7 million per year to match fund local NHS spending on children’s palliative care will also be available in this period. We welcome recent government commitments on social care funding for local authorities, COVID recovery funding for education settings and clear messages that key services including therapies and short breaks for respite should restart.

Much more is needed now, however. Several key areas of the children’s palliative care sector desperately need targeted government investment to ensure the sustainability of lifeline services for seriously ill children. Over the course of the new parliamentary session, Together for Short Lives is calling on the government to:

  1. Invest in making sure seriously ill children and families can access the palliative care they need out of hours and at weekends.

  2. Meet the annual £434 million gap in local authority funding for social care for disabled children in England and establish a £41 million Disabled Children’s Innovation Fund.

  3. Join up health, education and social care for seriously ill children and their families. A number of current government initiatives have the potential to do this, including the review of the special educational needs and disability (SEND) system; the independent review into children’s social care; the national strategy for disabled people and the white paper setting out legislative proposals for a Health and Care Bill.

  4. Make sure that seriously ill children and their families receive the financial support they need from the benefits system, including by implementing the Social Security Advisory Committee recommendation to consider extending the higher rate disability living allowance (DLA) mobility component to children under the age of three.

  5. Invest in an ambitious and funded COVID recovery and catch-up plan for disabled children covering not just education, but also health and wellbeing. A narrow focus on attainment is unlikely to be successful in enabling the majority of disabled children to catch-up.

These actions could truly level up our society for children who need palliative care for their families. They could also help the government to achieve commitments that the Conservative Party made in its 2019 general election manifesto.

Time is short for seriously ill children; some will not live to see the next time the Queen opens a new parliamentary session. It is vital that the government builds back better for them and their families now by urgently investing in the palliative care they need.

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