Stirling, June 2009 Newborn Sickle Screening Programme – Clinical Pathways in Scotland. EA Chalmers Royal Hospital for Sick Children, Glasgow.

Stirling, June 2009 Newborn Sickle Screening Programme. Objectives: –To achieve lowest possible childhood death rate Early infant mortality Mortality in children <5yrs: <4/1,000 person yrs of life –To minimise childhood morbidity from sickle cell disorders –Accurate diagnosis of infants with HbSS, HbSC, HbSD & HbS/beta thalassaemia –Offer treatment and start parental education in a timely manner

Stirling, June 2009 Newborn Sickle Screening Programme - Clinical Care Pathways Identification of cases –Newborn blood spot screening programme Referral of “affected” cases –Named regional lead clinicians –Confirmation of diagnosis Timing Repeat testing Communication to parents Provision of clinical services

Stirling, June 2009 Sickle cell disease – Clinical Services Sickle Cell disease in Childhood – Standards & Guidelines for Clinical Care (DOH/Sickle Cell Society) Delivery of healthcare : –In community/at home –Acute care/local hospitals –Specialist care Paediatric haematology PICU/HDU Transcranial doppler Transfusion & chelation/MRI monitoring Hydroxycarbamide

Stirling, June 2009 Sickle Cell Disease – Paediatric Clinical Services in Scotland –Patient numbers Existing cases – Approx. 50 children New cases – Approx. 5 per annum –Geography Glasgow, Edinburgh, Aberdeen, Dundee –Staffing Medical, nursing, other –Clinical services Acute/local Specialist

Stirling, June 2009 Newborn Sickle Screening – Results of Mapping Exercise 4/13 boards reported experience of neonatal testing/diagnosis –Confirmation of diagnosis <3 months –Initiation of treatment <3 months –Follow up arrangements Paediatric haematology

Stirling, June 2009 Sickle Cell Disease – Paediatric Clinical Services in Scotland Sickle Cell disease in Childhood – Standards & Guidelines for Clinical Care –Equitable comprehensive care programme National standards for TCD scanning –Training support, audit Models for care in Scotland –Managed clinical network –National paediatric specialist service Clinical network arrangements –Need for “tertiary” support/advice –Transition & adult services