G401(P) Development of a paediatric specialist multidisciplinary down syndrome clinic

Background Down syndrome (Trisomy 21) is a chromosomal condition with special health care needs and single most common identifiable cause of learning difficulties. Medical conditions such as thyroid dysfunction, structural heart disease, problems with hearing, vision and growth are significantly higher in these patients. Evidence suggests that early screening, diagnosis and medical management of these problems can significant reduce secondary illnesses resulting in improved quality of life. Therefore children with Down syndrome requires long-term follow-up in dedicated specialist clinics.This Quality Improvement (QI) project was undertaken as medical care for most Down syndrome children were not met in line with national standards. Aims To develop a patient centred high quality service in a specialist multidisciplinary Down syndrome clinic to ensure standardised, evidence based medical care in line with national standards. Methods A retrospective Audit of current services for children with Down syndrome was completed which identified number of deficiencies within existing services. Recommendations included; establishing a specialist multidisciplinary Down Syndrome Clinic and developing local care pathway for improved documentation and communication. Quality Improvement tools including; Process Flow Analysis, Fishbone diagram, Purpose to practice, and Parent feedback questionnaire were used during this project. Results and conclusion A specialist Multidisciplinary Down Syndrome clinic was established with first clinic in January 2017. Pilot of once a month clinic with PDSA cycle for 6 months. A local care pathway was developed including core clinic members, clinic frequency, templates, referral criterion and MDT communication framework. Children and young people with Down syndrome are involved in service development. Promoted joined up working in partnership with patients and families References . Guidance for Essential Medical Surveillance for Children with Down syndrome. www.dsmig.org.uk . Paediatric Service Specification. Services for Children & Young people with Down syndrome. RCPCH.