The West Midlands Children and Young People’s Palliative Care Toolkit

1. The West MidlandsChildren and Young People’sPalliative Care Toolkit Lynette Thacker Clinical Nurse Specialist Paediatric Palliative Care ABMU Health Board July 2011 Disclaimer: Whilst every effort has been made to ensure that the information in this presentation is accurate and referenced the author does not accept any responsibility for the use by any third parties.

2. About the toolkit • A Multi-professional and Multi-Agency toolkit produced by the West Midlands Paediatric Palliative Care Network funded by the Department of Health as part £30million pound initiative. • Consultation for the toolkit was provided from all sectors involved with provision of clinical paediatric palliative care. • The toolkit has been distributed to every paediatric ward and community children’s nursing team in the West Midlands. • The toolkit aims to raise the standards in the delivery of paediatric palliative care by providing a resource for all professionals at the point of delivery care. • Each team was charged with taking the toolkit back to their individual trusts and obtaining authorisation from their governance departments for us.

3. Section 1: Children’s Palliative Care • When Should Palliative Care be Introduced • Description and copy of each of the following pathways produced by ACT: • General Paediatric Palliative Care Pathway • Transitional Palliative Care Pathway • Neonatal Palliative Care Pathway • Palliative Care Definitions and Terminology • Palliative Care • End of Life Care • Terminal Care

4. Respecting Equality, Dignity and Consent to Treatment • Record Keeping • Minimum Data Set: Database referred to as Involve to Evolve https://mds-web.bham.ac.uk/involvetoevolve

5. Section 2: Planning Children’s Palliative Care • Newly Diagnosed – ACT Family Factsheet • Communication in Palliative Care Advice on breaking bad news, handling difficult situations and collusion. • Communicating About Palliative Care in Learning Disability Workshop on communication toolkits that can be bought and one that can be downloaded. Referral Forms for Paediatric Palliative Care Medical Input and Nursing Input • Who to Ring for Advice • Facilitating High Dependency Unit Admission and Discharge • End of Life Care Planning – ACT Family Factsheet

6. Advanced Care Planning Explanation about the development. • General advice on the supply of oxygen • Out of Hours Information Sheet • Ambulance Service DNAR Information

7. Transitional Palliative Care • Parental Responsibility • Brief explanation • Understanding Siblings Needs – ACT Family Factsheet

8. Section 3: Managing Children’s Palliative Care • Approaching Symptom Control in Palliative Care • Managing the Spectrum of Symptoms in Palliative Care • Symptom Care Flow Sheet Aide-Memoire • Parent’s Symptom Control Information Algorithms to Support Urgent Symptom Control Management • Pain • Nausea and Vomiting • Breathlessness • Seizures • Bleeding • Agitation • End of Life Care Drug Box Contents Guide – Oncology & Non-Oncology • Operational Policy for Children’s Symptom Control Drug Cases • Paediatric Event Monitoring Form - Could be used for audit.

9. Writing Prescriptions for Controlled Drugs Advice and good practice guidance. • Taking Controlled and Prescription Drugs to Other Countries Advice to be given to families. • All aspects of using Syringe Drivers • Drug Compatibility Charts Directs the professional to a website for information. • Drug Administration Document • Breakthrough Medication Authorisation Sheet • Just in Case Medication Authorisation Sheet • Carers/Self Record of Medication Taken

10. Section 4: Care Around the Time of Death Information, advice, examples of forms and booklets for use with in different clinical areas. • Faith Matters Belief Grid – Birmingham Children’s Hospital • Faith Matters Pathway – Birmingham Children’s Hospital • Organ and Tissue Donation

11. Information Around the Time of Death • Verifying, Certifying Death, Post Mortem Examination, Child Death Review Process, Check List for Notification of a Child’s Death • Example of parent booklets “When a Child Dies at Birmingham Children’s Hospital and at home”, use of Memory Boxes • Consent Letter to Take A Child’s Body Home from Hospital

12. Section 5: 24/7 Access to Staff, Supplies and Drugs • Information and guidance for developing locality specific information that can be added to the toolkit in individual areas. Section 8: The Drug Administration Document • The Drug Administration Document Form and example of completed form

13. Section 6: The Advanced Care Plan • The Advanced Care Plan • Guide to using the Child and Young Person’s Advanced Care Plan Information for professionals • What happens if….? Information for families • What Is An Advanced Care Plan Information for the young person • Child and Young Persons Advanced Care Plan Policy Needs to be agreed by local governance groups

14. Section 7: Facilitating Hospital Admission and Discharge • Two toolkits and guides for use in the paediatric intensive care and high dependency units • The Rapid Discharge Tool • HDU Tool and Health Care Record for CYP with Complex and Palliative Care Needs

15. Section 9: Birmingham Children’s Hospital Palliative Care Formulary Birmingham Children’s Hospital Palliative Care Formulary (Oncology Unit) • Section 10: The Rainbows Symptom Control Manual The Rainbows Symptom Control Manual • Section 11: The APPM Master Formulary The APPM Master Formulary • Section 12: Local Information Local Information.