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

1. Executive Summary

This framework aims to ensure that there are recognised pathways for palliative care within and between Health Boards for every child and young person from the point of diagnosis of a life-limiting condition (LLC) or life-threatening condition (LTC), through to living with their conditions until the end of their life. These pathways should be equitable, sustainable, age appropriate and independent of geography. Although health services currently provide diagnosis and ongoing management of healthcare needs for children and young people, symptom management and other palliative care needs frequently becomes fragmented and sub-optimal in all stages.

Health Boards, in partnership with Social Work, Education, Children's Hospice Association of Scotland (CHAS) and other voluntary organisations should apply the integrated model for palliative care in this framework, taking into consideration the age, geographical and social needs of their particular population of children and young people. The following outcomes and objectives should underpin any palliative care service for children and young people in Scotland, no matter where or how it is provided.

Outcome 1

Each Health Board should clearly identify lead professionals with overall responsibility for delivering children and young people's palliative care services.

Outcome 2

Children and young people's palliative care services should be planned and developed on the basis of incidence and prevalence in each Health Board area.

Outcome 3

All children and young people should have equitable access to palliative care which is flexible, planned and person-centred and takes account of their physical, emotional and spiritual needs.

Outcome 4

All children and young people with palliative care needs should be cared for and die in their preferred place.

Outcome 5

All children and young people with palliative care needs will receive safe, effective and person-centred care delivered efficiently and on time by a trained and competent workforce adopting a GIRFEC (Getting it Right for Every Child) approach.

These outcomes meet the recommendations from Living and Dying Well - Building on Progress and the Healthcare Quality Strategy for NHSScotland. The following key objectives will ensure that these outcomes are achieved.

Key Objectives:

1. Lead doctor and nurse for children and young person's palliative care

Every Health Board should ensure that there is an identified lead doctor and nurse within their children's services for palliative care. These could be identified on a regional basis.

2. Identification of all children and young people with palliative care needs

All children and young people with palliative care needs should be identified as this will allow children's services in each Health Board to plan appropriate services and to analyse the gaps between the total resources required against those already committed to palliative care.

3. Breaking bad news

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

4. Lead paediatric consultant

Every child and young person should have an identified lead paediatric consultant who will have overall clinical responsibility for ensuring that care is co-ordinated in a holistic manner.

5. Assessment of care needs and multi-agency care plan

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

6. Planning discharge

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

7. Recognition and planning for end of life care

Every child, young person and family should be supported to agree an end of life plan when the end of life stage is recognised. This should include choice of place of care, place of death and completion of an advanced care plan and CYPADM (Child and Young People's Acute Deterioration Management) form.

8. 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.

9. Transition

Health Boards should develop local pathways for transition of young people with palliative care needs to appropriate adult services.

10. Education and training

All staff, caring for children and young people and their families with palliative care needs should be able to access education and training in order to achieve and maintain the requisite skills, knowledge and competencies to meet the specific palliative care needs of each child or young person.

Implementation of these outcomes and key objectives across all Health Boards will deliver palliative care services which are person-centred, safe, effective, efficient and equitable throughout Scotland for children, young people and their families, available where and when they need them.