1. 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

2. 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

3. 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.”

4. 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.

5. 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.

6. 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

7. 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. “

8. 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.

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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?