Down syndrome pathway - North Tees

The patient experience and feedback from families in Stockton and Hartlepool has identified the need for a clinical care pathway for children with Down Syndrome. Input has been sought from parent/carers and the services closely involved with the care of these children, which can be viewed here. It is effectively putting all the health information that may be pertinent for people with Down Syndrome in one place. Multidisciplinary representatives from Community Services, North Tees and Hartlepool Hospitals, Education, James Cook University Hospital, Harrogate and District Foundation Trust, Positive About Down Syndrome and Down’s Syndrome North East Charities, all working with Parent/Carers with lived experience. The Down Syndrome Pathway Improvement Steering Group was created to produce a clinical pathway emphasising the need for information and engagement with families. The pathway does not replace those services that all children and adults have access to e.g. GP services, midwifery, health visiting, school nursing (now the 0-19 service in Stockton on Tees), therapy services, community health services and hospital services. It seeks to clarify additional services that may need to be involved in the care of a person with Down Syndrome because of some common health difficulties experienced. These guidelines are largely based on work done by Down Syndrome Medical Interest Group (DSMIG, UK and Ireland) who have produced guidelines for basic medical surveillance in children with a diagnosis of Down Syndrome. These guidelines and a wide range of other health information can be found at the Down Syndrome Medical Interest Group.

We would like to acknowledge the work done by Hull CCG, Nottingham Down Syndrome Children’s Services and Oxford Health NHS Foundation Trust and County Council as we have also utilised their guidelines for this pathway. The pathway and guideline has been co-produced with parents/carers/ service users and professionals to ensure the information is accurate, and is driven by those who will benefit the most from using it. Consent from parents and carers should be obtained prior to referral and notification of needs within the pathway as per local policy. Clarification regarding consent arrangements for each service should be sought.