The West Midlands Children and Young People

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The West MidlandsChildren and Young
PeoplesPalliative 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.
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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 childrens 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.

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Section 1 Childrens 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

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• 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

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Section 2 Planning Childrens 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

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

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

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Section 3 Managing Childrens Palliative Care

• Approaching Symptom Control in Palliative Care
• Managing the Spectrum of Symptoms in Palliative
  Care
• Symptom Care Flow Sheet Aide-Memoire
• Parents 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 Childrens Symptom Control
  Drug Cases
• Paediatric Event Monitoring Form - Could be used
  for audit.

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• 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

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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 Childrens
  Hospital
• Faith Matters Pathway Birmingham Childrens
  Hospital
• Organ and Tissue Donation

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

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• 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

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Section 6 The Advanced Care Plan

• The Advanced Care Plan
• Guide to using the Child and Young Persons
  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

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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

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• Section 9 Birmingham Childrens Hospital
  Palliative Care Formulary
• Birmingham Childrens 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.