A Framework for the Delivery of Palliative Care for Children and Young People in Scotland

Lead doctor and nurse for children and young persons palliative care

Every Health Board should ensure that there is an identified lead doctor and nurse within the children's services for palliative care

Have you identified a lead doctor and lead nurse within your children's services for palliative care for children and young people

National Delivery Plan for Children and Young People's Specialist Services in Scotland (2008).

Building on progress reference

Identification of all children and young people with palliative care needs

Every Health Board should ensure that all children and young people with palliative care needs in their area are identified

Are all the children and young people in your health board area with palliative care needs identified?

Hain's Dictionary

Surprise Question

Act Categories of palliative care

Act Service Self assessment tool

Electronic Palliative Care Summary (EPCS)

Breaking bad news

Every family should receive the news of their child's diagnosis in a face-to-face discussion in privacy and should be treated with respect, honesty and sensitivity

Is diagnosis shared with parents in a face-to-face discussion (using an interpreter if necessary)?

Training for staff on communication and breaking bad news

Communicating with Children and Young People 0-18 years (GMC, 2007)

Psychosocial Interventions -Education Resource Children and Young people. www.gmc-uk.org/Paediatric_Palliative_Medicine__FINAL.pdf_30456043.pdf

Are private settings available for breaking bad news?

Are parents encouraged to have another relative or friend present to provide support?

Is appropriate written material provided for parents and children?

Assessment of care needs and multi-agency care plan

Every child and family should receive a multi-agency assessment of their palliative care needs and have a multi-agency care plan agreed with them that identifies a key worker for the family and provides co-ordinated care and support to meet these needs

Is a lead paediatric consultant identified for each child or young person?

Building on progress http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWell/buildingonsuccess

Children's Hospice association of Scotland - Plan 2011-2016 Care, Support, Connections (2011) www.chas.org.uk

Training and education for all staff involved in C&YP palliative care within hospital and community setting

NHS Lothian Anticipatory Care Plan for children and young people (Appendix 3)

Girfec, Implementation Plan (Scottish Executive, 2006)

A care pathway for children and young people with life-threatening and life-limiting conditions related to severe acquired brain injury. http://www.thechildrenstrust.org.uk/page.asp?section=1703&sectionTitle=Palliative+care+pathway+for+acquired+brain+injury

Seen and Not Heard (Long term conditions alliance Scotland, 2010

Square table Evaluation Report - together for short lives. http://www.act.org.uk/core/core_picker/download.asp?id=972

Is a lead professional/key worker identified for every child or young person?

Does each child or young person have a multi-agency care plan agreed?

Is every child, young person and their family given choices about the care they receive?

Planning discharge

Every child and family diagnosed with palliative care needs in the hospital setting should have an agreed discharge plan. This should include tertiary and secondary hospital services, community services and voluntary services as required

Is the GP and community services included in the planning before the child is discharged?

Care Pathway for Children and Young People with Palliative Care Needs in Hospital (2010) (appendix 5)

Discharge Pathway for Children with Exceptional Health Care Needs MCN for Children with Exception Health Care Needs: http://www.cen.scot.nhs.uk/

Anticipatory Care Plans (Lothian HB ACP for children appendix 6)

Are families and carers trained prior to discharge?

Have arrangements been made for regular review of the anticipatory care plan?

Recognition and planning for end of life care

Every child and family should be supported to decide on an end of life plan including choice of place of care and place of death once the end of life stage is recognised

Are families supported to make realistic choices about place of care and death?

Care Pathway for Children and Young People with Palliative Care Needs in Hospital (2010) (appendix 5)

Just in Case Box (http://www.rcn.org.uk/__data/assets/pdf_file/0009/270873/4.7.2_Palliative_care_drug_boxes.pdf)

Paediatric Resuscitation Policy for Scotland http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWell/CYPADM/CYPADMPolicydocument

Rainbows Children's Hospice: Basic Symptom Control in Paediatric Palliative Care - 8th Edition http://www.act.org.uk/page.asp?section=167&sectionTitle=Basic+symptom+control+for+children%27s+palliative+care

ACT GP work book: http://www.act.org.uk/page.asp?section=411&sectionTitle=Children%27s+palliative+care+handbook+for+GPs

The Association for Paediatric Palliative Medicine (APPM) was formed in November 2009 following a merger of the Children's Hospice UK doctors group and the British Society for Paediatric Palliative Medicine (BSPPM). http://www.act.org.uk/landing.asp?section=385&search=formulary

Liverpool care pathway (young adults)

CHAS end-of-life care plan.

Do families have access to 24-hour symptom control?

Are families provided with a 24-hour contact number?

Do all children and young people who are recognised to be in the end-of-life stage have an agreed resuscitation plan?

Care after death

Following the death of a child or young person every family should be allowed time and privacy with their child. Bereavement support should be offered for as long as the family requires this and should be appropriate for all family members

Are families given time and privacy with their child after death?

Shaping Bereavement Care (Scottish Government, 2010).

Training and education for all relevant staff in bereavement.

What to do after death booklet

Children's Hospice Association Scotland (CHAS) http://www.chas.org.uk/

Winstons wish www.winstonswish.org.uk

Child bereavement trust www.childbereavement.org.uk

Is practical advice and written information available about what to do after death?

Is bereavement support available for parents and siblings for as long as required?

Transition

Health Boards should develop local pathways for transition of young people to appropriate adult services

Is transition to adult services planned jointly by children's and adult services?

Act Transition Pathway

Think Transition Document RCPE 2008

Is the transition journey started at an age and developmentally appropriate time?

Education and training

All staff, caring for children and young people and their families with palliative care needs, should be trained and have the appropriate skills and competence to meet the specific care needs of this client group

Do all paediatric staff have the skills and competencies to deliver safe, effective, efficient and timely palliative care for children and young people in their Health Board area?

Training in communication and palliative care

In house training NES training; HEI programmes

Principles of Nursing Practice (Royal College of Nursing, 2010)

Royal College of Nursing (2002) A framework for nurses working in specialist palliative care: Competencies project, London: RCN. Publication code 001 958.

Royal College of Nursing (2002) Nursing education: a statement of principles, London: RCN. Publication code 001 495.

Royal College of Nursing (2002) Nurse staffing in children's wards and departments - results of a Delphi study (unpublished report by RCN Paediatric Nurse Managers Forum).

Royal College of Nursing (2003)

Children and young people's services: Pre-registration nursing education, London: RCN. Publication code 001 996.

Royal College of Nursing (2003) Preparing nurses to care for children and young people. Summary position statement by the RCN Children and Young People Field of Practice, London: RCN. Publication code 001 997.

Royal College of Nursing (2003) Children and young people's nursing: a philosophy of care: Guidance for nursing staff, London: RCN. Publication code 002 012.

Royal College of Nursing (2003) Children's community nursing - Promoting effective team working for children and their families, London: RCN. Publication code 000 878.

Royal College of Nursing (2003) Caring for young people: guidance for nursing staff, London: RCN. Publication code 001 824.

Psychosocial Interventions -Education Resource Children and Young people. www.knowledge.scot.nhs.uk

West Midlands Children and Young peoples palliative Care Toolkit. http://www.act.org.uk/page.asp?section=417&sectionTitle=West+Midlands+Children+and+Young+People%27s+Palliative+Care+Toolkit

Association for Paediatric Palliative Medicine (APPM) www.palliativecareguidelines.scot.nhs.uk/documents/APPM_Master_Formulary_V1_1[1].pdf

Royal College of Paediatrics and Child Health http://www.rcpch.ac.uk/

• Medical

• Nursing

• Play

• AHPs

• Pharmacists

• Psychologists

Do all primary care staff have the skills and competencies to deliver safe, effective, and timely palliative care for children and young people in their Health Board area.