Children’s Palliative Care Shaun Walsh Director of External Relations Together for Short Lives Dr Emma Gates Specialist Registrar Alder Hey Specialist Palliative Care team

What is different about palliative care for children? Scope from diagnosis Fewer patients over a wide geographical area Familial conditions affecting parents and siblings Many professionals have very limited experience of end of life care Importance of parallel planning Some children may be years from end of life Increasing prevalence: children living longer with increasingly complex health needs

Department of Health: ‘Our commitment to you for end of life care’: “To support high quality personalised care for children and young people, commissioners and providers of services must prioritise children's palliative care in their strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon. Commissioners should also consider how they can structure services that offer accessible, high quality respite and bereavement support for children and their families.”

NICE Guideline: End of Life Care for Infants, Children and Young People: Planning and Management where possible, the child should receive palliative care, including end of life care, in the place they choose children with life-shortening conditions should be cared for by a multidisciplinary team who meet regularly to discuss the child’s care. stressing the importance of parallel planning, so that families and professionals are prepared for a change in the course of the child’s condition. involving neonatal medical teams in care planning for a child if there is an antenatal diagnosis of a life-limiting condition. recognising importance of managed clinical networks in delivering high-quality coordinated children’s palliative care.

LA commissioning in the North West Local authorities in the North West performed poorly compared with other regions in England. However, there was a wide variance within the region. For example Blackpool Council received 5*, while Cheshire West and Chester Council received 0* as they responded ‘no’ to every survey question. Only 11% of local authorities in the North West stated that the commission children’s palliative care. Just 1 local authority in the North West (Blackpool) stated that they commission children’s hospice services, despite the crucial role that they play providing short breaks for children and families. Key Our survey asked local authorities about which services they commission, including short breaks, emotional support and children’s hospices.

CCG commissioning in the North West The North West region received average scores in our CCG commissioning map. While there are areas that received 5* (including Bolton, Greater Preston, and Bury), other areas scored poorly. E.g. Warrington CCG does not commission short breaks, children’s hospices, or psychological support. Only 70% of CCGs commission children’s hospices, compared to 80% nationally. Over a quarter of CCGs do not commission out of hours community children’s nursing, in line with the national average. Key

Nationally - A land of confusion? Seven CCGs (4%) and two local authorities (2%) have told us that they do not commission children’s hospices because they are charities. Six CCGs (4%) wrongly told us that NHS England are responsible for directly commissioning children’s palliative care Too few CCGs and local authorities and were able to identify exactly how much funding they spent on children and young people with life shortening conditions. “

National Funding Context On average, the overall amount of statutory funding for charities providing children’s palliative care continues on a downward trajectory, falling year on year (22% in 2015/16 compared to 23% in 2014/15 and 27% in 2013/14). Local authority funding for children’s palliative care charities has fallen dramatically, down by 61% over the last year – only contributing 1% of the money needed.

National Funding Context Cuts and freezes in statutory funding for children’s hospice and palliative care charities means a bleak outlook for seriously ill children and families in England. This is despite the cost of delivering this care increasing by 10% due to additional demand. Average annual statutory funding for children’s hospices is at 22% compared to 33% for adult hospices

Department of Health: Commitment to end of life care Importance of networks Access to specialist advice and support Education and training Advance Care Planning Choice in the setting of end of life care Antenatal palliative care and bereavement support

Northwest Children and Young People’s Palliative Care Network Brings together representatives of Children with palliative care needs and their families Commissioners and providers of children’s palliative care With the aim of improving co-ordination availability and delivery of palliative care NO statutory funding whatsoever Professionals attend meetings at discretion of their line manager Administration including managing the website and resources takes place in professional’s unpaid time

Access to specialist advice and support Well established consultant led specialist palliative care team at Alder Hey, Liverpool Consultant led community palliative care team in Manchester Strong partnership working between many of the children’s hospices, specialist palliative care services and community children’s nursing teams Demand greatly outstrips capacity Inpatients are only reviewed if essential Less than 50% of children who would benefit from Advance Care Plans have access

Access to Education and Training Network Education and Training Framework Outlines core competencies across the range of professional groups and from generic to specialist palliative care Annual Children’s Palliative Care Conference Range of education and training opportunities including Advance Care Planning Training Advanced Communication Skills Training NO statutory funding for Network education and training Professionals are increasingly struggling to be released for training

Advance Care Planning Children’s Advance Care Planning developed as part of NWAS unified DNA-CPR programme Standardised Northwest documentation Rollout programme including local awareness raising and one day training course Availability of one day training course limited by lack of funding NO resources for central co-ordination or administration of advance care plans Resource issues prevent advance care plans being reviewed and updated in a timely fashion

Choice in the setting of care Good children’s hospice provision in much of the Northwest Areas with exemplary models for partnership working for end of life care at home including palliative care drug boxes, symptom management guidance and clinical leadership Areas with little or no community children’s nursing 24/7 on call support for end of life care consistently available in only limited areas Personal Health Budgets and Integrated personalised commissioning cannot respond quickly enough or if there is no service available to commission

Antenatal palliative care and bereavement support Neonatal network funded to develop palliative care and bereavement pathways National leader in perinatal palliative care Demand outstrips supply Resources for maintaining and updating pathway and resources unclear

The How Do we ensure that we seize the opportunities created by the Government Commitment and NICE guideline? Do we support and connect those commissioning and providing services with children young people and their families? Do we build and fund Managed Clinical Networks? Do we ensure commissioners get the support to understand children’s palliative care? How do we improve ‘equity,’ transparency & accountability? How can we help?