Transcript The West Midlands Children and Young People`s Palliative Care

The West Midlands
Children and Young People’s
Palliative 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.
About the toolkit
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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.
Section 1: Children’s Palliative
Care
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When Should Palliative Care be Introduced
Description and copy of each of the following pathways produced by
ACT:
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General Paediatric Palliative Care Pathway
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Transitional Palliative Care Pathway
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Neonatal Palliative Care Pathway
Palliative Care Definitions and Terminology
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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
Section 2: Planning Children’s
Palliative Care
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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
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
Section 3: Managing Children’s
Palliative Care
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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
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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.
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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
Section 4: Care Around the Time of Death
Information, advice, examples of forms and
booklets for use with in different clinical areas.
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Faith Matters Belief Grid – Birmingham
Children’s Hospital
Faith Matters Pathway – Birmingham
Children’s Hospital
Organ and Tissue Donation
Information Around the Time of Death
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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
Section 5: 24/7 Access to Staff, Supplies
and Drugs
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Information and guidance for developing locality
specific information that can be added to the toolkit
in individual areas.
Section 8: The Drug Administration
Document
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The Drug Administration Document
Form and example of completed form
Section 6: The Advanced Care
Plan
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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
Section 7: Facilitating Hospital
Admission and Discharge
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Two toolkits and guides for use in the
paediatric intensive care and high
dependency units
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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 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.