We have used our Budget representation to call on Chancellor of the Exchequer Philip Hammond to increase funding for children’s palliative care when he delivers his speech to parliament 29 October. We have also asked the Treasury to provide more support for children with life-limiting conditions and their families by investing in mobility support, short breaks and the transition between children’s and adult services.
It is vital that the chancellor sets out support for seriously ill children and their families by taking the following action:
- Increase the Children’s Hospice Grant to £25 million per year: It is essential that the value of the grant is increased to £25million to reflect the growing demand and complexity of care required by children with life-limiting conditions and their families.
- Provide parity of funding between children’s and adult palliative care services: Children’s hospices currently receive only 22% of their funding from statutory sources, compared to 33% in adult hospices. This discrepancy must be addressed.
- Introduce a funded children’s palliative care strategy: We would like the government to commit to a national inquiry, producing a children’s palliative care strategy that takes a family-centred and holistic approach to health, social care and educational interventions.
- Provide the £7.6million needed to make sure that families of children under the age of three who rely on bulky medical equipment receive mobility support to enable them to leave home or hospital: Motability and Family Fund are currently piloting a scheme to provide vehicles to children under the age of three who are not eligible for the mobility component of child disability living allowance (DLA) but who rely on bulky medical equipment. We ask the Treasury to allocate funding to make sure that the scheme can be implemented for all of the 2,781 children in the UK under the age of three who depend on bulky medical equipment
- Invest in children’s social care, including short breaks for respite: The Disabled Children’s Partnership has found that there is a £1.5billion annual funding gap for disabled children’s services. By committing £1.5billion per year, just 0.2% of total government spending, ministers can ensure disabled children and their families have the support in place when they need it.
- Bridging the cliff edge in care between children’s and adult services: Young people face a cliff edge in care when they transition from children’s to adult services. We would like to see seed-funding for voluntary sector organisations with projects designed to ease this transition and prevent young people falling through gaps in care.
- Extensions in the regulations of the Parental Bereavement (Leave and Pay) Act 2018: We welcome the Parental Bereavement (Leave and Pay) Act 2018 and would now like to see funding allocated to make sure that the regulations associated with the act can ensure that parents have the flexibility and support they need to grieve the loss of a child in a way that is appropriate to them.
You can read the full representation here. On the 29 October we’ll be following the chancellor’s announcements and sharing what they mean for children’s palliative care.