1. How Networks Can Help Dr Lynda Brook Macmillan Consultant in Paediatric Palliative Care, Liverpool Chair Northwest Region Children and Young People’s Palliative Care Network

2. How networks can help  Shared aims and objectives from Aiming High for Disabled Children Better Care: Better Lives  What are managed clinical networks?  Specific projects and initiatives Information Involvement of the child and family Joint interagency working Response to changing needs  Next steps…

3. Disability or palliative care?  Disability (DDA) Physical or mental impairment that has a substantial and long term adverse effect on the ability to carry out normal day to day activities  Palliative are Care for children with life threatening of life limiting conditions Life-limiting conditions: No reasonable hope of cure and from which children or young people will die Life-threatening conditions: Curative treatment may be feasible but can fail Children with disability Children with palliative care needs

4. Aiming High for Disabled Children Better Care Better Lives  Shared aims and objectives Information Involvement of the child and family Joint interagency working Response to changing needs

5. Shared aims and objectives  Information Prevalence of children with disability and palliative care needs Information on universal and targeted services  For children, families and professionals  Health, voluntary [independent sector] and local authority: children’s services, housing, leisure, transport  How and when to access services  How services are commissioned, delivered and allocated Demand for services and patterns of service use  Short break care

6. Involvement of the child and family  Input into shaping & planning services: feedback & user views  Choice in place of care/care in setting of choice  Needs assessment: fair, understandable eligibility criteria  Care planned and delivered in full consultation with child, family & service providers

7. Joint interagency working  Health, education, local authority children’s services, voluntary sector  Primary, secondary & tertiary healthcare settings  Universal, targeted and specialist services  Commissioning and delivery of services  Pooled or aligned budgets or resources: value for money  Joint workforce strategy

8. Response to changing needs  Joint [interagency] assessment of need Key-worker  Range of services designed to meet identified needs of service users End of life care/ advanced care planning Short break support as preventative not crisis service Menu of short break options  Daytime, overnight  Home, away from home  Appropriate provision for special needs including moving and handling, behavioural problems, palliative care Transition to adult services  Sustainable care and support

9. What are managed clinical networks?  Interdisciplinary network Representing providers and users of services for a particular client group Over a defined geographical area  Recognized by the Department of Health [1] as an exemplary model for informing both commissioning and delivery of palliative care services for children and young people [1] Better Care: Better Lives DH Feb 2008

10. Managed clinical networks in children’s palliative care  Bring together representatives of Children, young people with palliative care needs and their families, Commissioners and providers of children’s palliative care  NHS, Voluntary sectors, Social Services and Education, across  Primary, secondary and tertiary care  Universal, targeted and specialist services With the aim of improving co-ordination availability and delivery of palliative care. Also available to provide advice and expert opinion on a wide range of service issues including  Service configuration,  Interdisciplinary team working and  Guidelines for best practice.

11. The Northwest Region Children and Young People’s Palliative Care Network  Formed in Spring 2008  Congruent with NHS Northwest  3 Zonal groups Merseyside and Cheshire Children’s Palliative Care CNG Greater Manchester Zonal group Cumbria and Lancashire ZOnal group  Population of approximately 6.8 million

12. How networks can help  Information Children’s palliative care minimum dataset [MDS] Children’s palliative care services mapping Children’s palliative care services directory  Involvement of the child and family Patient and parent representation; links into patient and parent groups Evaluation of services Planning of services

13. How networks can help  Joint interagency working Planning & commissioning of services Delivery of services Effective communication and partnership working  Response to changing needs Education and training Ensuring services are fit for purpose End of life care Standards for key-working and interagency working

14. Information  Children’s palliative care minimum dataset (MDS) to identify Children with life threatening and life limiting conditions Patterns of referral to children’s palliative care services  20-item minimum dataset collected When a child is referred to a service When a child dies  Implementation Initial pilot and ongoing rollout in Merseyside and Cheshire Funding for national roll-out

15. Children’s Palliative Care MDS First year pilot 2005 – 6  121 referrals for 103 children in Wirral and West Cheshire  CNS anomaly (34%),  Muscle disease (15%)  Cancer (12%)  100 notifications were received for 87 deaths 63% children were under 5 years at death Children with cardiac conditions were younger, not known to palliative care services and most likely to die in hospital  Overall 190 children were identified  An estimated 23 children were in their last 6 months of life at any one time

16. Information  Children’s palliative care services mapping To provide a directory of services for professionals and families To facilitate effective, networked, co- ordinated, child and family-centred, provision of care To facilitate needs based assessment and inform strategic planning of children’s palliative care services

17. Involvement of the child and family  Short break care audit Joint project between Liverpool health, local authority children’s services and education Questionnaire to families of children with complex healthcare needs who would be eligible for short break care Families identified through  Children’s community nursing team  Specialist palliative care team  Children with disabilities social work team  Children’s hospices

18. Short break care audit  97 eligible children identified: 44% replied 9% children identified only through school  Although 53% families reported having an assessment of short breaks only 15% families reported awareness of a menu of short break care options  Most families were aware of hospice but only half of these accessed this service  24% families accessed care at home but 55% were not aware of this option and 18% had been offered care at home but declined.  68% were aware of direct payments but only 17% families reported using them

19. Joint interagency working  Locally based multidisciplinary teams Named lead paediatrician for palliative care identified for majority of acute and community services Regular clinical meetings  Alder Hey SPC team  CCN teams  Where possible: named paediatricians for palliative care

20. Response to changing needs  Equity of access to children’s community nursing (CCN) Central to development of multidisciplinary community teams, key-working and end of life care at home Current configuration of many teams too small to allow sustainable 24 hour 7 day a week cover Differences in management and funding structure prevent effective partnership working Work to develop core standards against which services can be benchmarked

21. Response to changing needs  Transition to adult services Lack of appropriate services in the adult sector, particularly for young people with complex healthcare needs and severe learning difficulties Active engagement of adult services  Primary, secondary and tertiary healthcare  Multiple specialties: neurology, respiratory, adult learning difficulties  Aim to develop a multispecialty multidisciplinary team  Links with voluntary sector and social care

22. Response to changing needs  Liverpool care pathway for the dying child (LCP) Integrated care pathway Practical advice and support for professionals caring for dying children Versions for home, hospital or hospice  Developing and sharing best practice across the Network

23. Response to changing needs  To develop a Network-wide coordinated multidisciplinary education program for paediatric palliative care  Specific palliative care education based around core competencies for CCNs and DNs Carers and support workers

24. Next steps …  Sustainable support and commitment  More active involvement of commissioners  Closer working between health and social care Transferrable skills? Shared education and training?  Working together Common aims Sharing and learning

25. Next steps…  Strategy and workplan Identify and overcome barriers to meeting needs of children and families  Learning from experience and example  SMART objectives  Standards and benchmarking Different footprints  Local team or service  PCT/Local authority  Collective commissioning and delivery across partner PCTs and Local Authorities  Northwest Region

26. Summary  Children with significant disability and children with palliative care needs are a small but important group with significant overlapping health and social needs  The numbers and needs of these children mean that collective arrangements for commissioning and delivery of services across a wider footprint than PCT or local authority is required  Networks have a pivotal role in joining commissioners and providers of services across health, social care, education, statutory and voluntary sectors in order to meet these needs