Developments in medical care have greatly improved survival for children and young people with profound disabilities and significantly more are living to adulthood. Children with complex and exceptional health needs commonly have multiple diagnoses and impairments and may be dependent on multiple technologies (e.g. long-term ventilation, tube feeding)
The Pathway is developed for the use for children meeting the assessment criteria as described below, however the pathway also supports the wider group of children with complex health needs.
CEN assessment criteria:
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 and ongoing or expected to be lasting for more than
Children will be identified in a number of ways. They may have a congenital severe health problem or an acute neonatal problem and have complex needs from birth. They may suffer a severe onset condition such as a road traffic accident or a severe infection. They may have a neurodegenerative disorder with gradual decline in health where they then meet the CEN criteria.
Once a child has been identified as being in the CEN criteria an initial planning discussion should take place with a lead professional identified to do this. Within the hospital this may be the responsible consultant or a senior nurse on the ward or the discharge planning nurse. In each area it is critical that there is a clearly identified person to lead the meetings.
When a child has been assessed as having exceptional healthcare needs information should be recorded on the NHS Scotland Support Needs System (SNS).