The National Managed Clinical Network for Children with Exceptional healthcare needs (CEN) has been initiated in March 2009 to improve the care for children with complex and exceptional healthcare needs in Scotland. For audit and research purposes the CEN NMCN will initially focus on a small group of children and young people with exceptional healthcare needs. The information obtained on the issues in the care of exceptional healthcare needs children and the recommendations and training based on this will not only affect the future care of exceptional healthcare needs children but also the wider group of complex needs children.
The assessment criteria used to identify the exceptional healthcare needs children are based on the support needs system (SNS), however the assessment criteria can also be used on children who are not in the SNS system.
The six impairment categories used for assessing the children and young people are:
A child or young person (up to the age of 19) is defined as having exceptional healthcare needs if they:
have severe impairment recorded in at least 4 categories together with enteral/ parenteral feeding
have severe impairment recorded in at least 2 categories and require ventilation/CPAP
the impairments are sustained, lasting for more than 6 months and ongoing.
See Functional Assessment Guidelines for further details.
The CEN criteria were piloted in Lothian and used to identify 49 children with exceptional healthcare needs. Based on the findings in Lothian and information collected by ISD it is estimated that there are at least 320 children with exceptional healthcare needs in Scotland.
The CEN criteria and estimated number of children with exceptional healthcare needs in each healthboard area are discussed in the following paper (Boot and Jackson, 2009)
Information routinely gathered for the national Support Needs System (SNS) has been used as a baseline for the following definition for children with complex needs agreed by the Scottish Complex Needs Group (ISD 2006).
The child has severe or profound disabilities in at least three of the following disability categories or the child has severe or profound disabilities in at least two of the following disability categories plus need of at least two types of resources. In either case the impairments and needs of these children are sustained-lasting for more than 6 months and on-going.
|Disability Categories: ||Resource Types: |
In order to identify those children with 'exceptional' complex health care needs, further indicators of clinical/nursing needs, derived from the decision making tool suggested in the DH consultation document for Continuing Care of Children from the English NSF is being trialled.
The Decision Support Tool scores five levels of need (priority, severe, high, medium, low). The Continuing Care Criteria are reached with 3 highs, 1 priority or 1 severe in the following areas:
An estimated 7200 children in Scotland meet the definition of children with complex needs. Currently, one of the issues is that only 3321 of these children are registered on the special needs system (SNS).