Who is the Pathway for?

This Pathway is to be used for children and young people (age 0-19 years) who fulfil the assessment criteria for children with exceptional healthcare needs (CEN, definition on NMCN CEN web site). However, professionals may find that they wish to include the larger group of children with complex needs if the Pathway proves to be helpful and encourages better and timely access to service.  The pathway should be used by all practitioners who work with children with exceptional healthcare needs and will be made available for families as a source of information.

What is the aim of the Pathway?

This Pathway has been developed with the aim to improve the early identification and inclusion of children with exceptional healthcare needs into a planning process, so that their discharge from hospital to community care happens at the earliest opportunity that their health allows and to ensure their needs are supported as effectively as possible within their locality. This web-based Pathway provides links to guidelines, good practice documents and relevant websites. Many topics will be revisited at different stages of the pathway, therefore the topics on the right support multiple steps in the pathway.

Why is there a timeline?

Children with exceptional healthcare needs each have different needs for services and equipment, this will affect the timeline for each child. The timeline will help us to identify where delays occur and why.

How will we measure effectiveness of the Pathway?

Initial measurements will relate to:

  1. Effective identification and early support to parents of CEN child.
  2. Time from identification to initial planning discussion.
  3. Time from discharge planning meeting to discharge to home.
  4. Evidence of use of care plans for care at home, social/education settings and use of acute care packages.
  5. Evidence of effective care coordination meeting model in place for each child within the GIRFEC model.
  6. Recording frequency of admissions to hospital.
  7. Evidence of access, if appropriate, to palliative care systems.

Policy Context

The pathway is developed in accordance with the following policy documents: For Scotland's Children (2001), Delivering a Healthy Future (2007), Better Health Better Care National Delivery Plan (2009), Getting it right for every child (GIRFEC, 2008), Living and Dying Well (2008).

What is the background to the Pathway?

This pathway has been developed by the Pathway of Care Development Group (a subgroup of the National Managed Clinical Network for Children with Exceptional Healthcare Needs, CEN) based on information, evidence, and good practice provided by practitioners across Scotland and is building on the Integrated Multi-agency Care Pathways document by ACT (Association for Children's Palliative Care). The group includes representatives from all areas of Scotland from Health, Social Work, Education, parents/carers and the Voluntary Sector.  The Pathway should be regarded as an evolving dynamic pathway to be modified in the future as evidence is gained from feedback and audit on the use of the pathway and the benefit to the group of children. The list of documents referred to in this pathway is not complete and we welcome any additional Good Practice documents from across Scotland (please send documents to NMCN CEN manager - see Contact Us).