Implementing Haemoglobinpathy Screening in a Low Prevalence Area

1. Implementing Haemoglobinpathy Screening in a Low Prevalence Area Jane Hibbert Regional Antenatal & Child Health Screening Coordinator East of England

2. Remit of presentation Implementing screening across the East of England, findings, resources available, lessons learned, experiences shared….

3. East of England • 1 Strategic Health Authority • 14 Primary Care Trusts • 17 Acute Trusts • 18 Maternity Units • 6 stand alone birthing units • 67,684 births in 2007/8 • Close borders to London • Diverse population

4. Antenatal Screening • 5 high prevalence trusts • 3 screening prior to 2007 • 2 implemented screening using FOQ • 3 planning to introduce FOQ • 12 low prevalence trusts use FOQ • Roll-out of screening in low prevalence areas from November 2006 • Completed by September 2007 • No specialist care provision in region

5. Newborn Screening • 2 Newborn Screening Laboratories: Addenbrookes & Great Ormond Street • June 2004 - Universal newborn screening introduced in Essex and expanded across Bedfordshire & Hertfordshire (GOS Lab) • April 2005 – Universal screeningcommenced in Norfolk, Suffolk & Cambridgeshire (Addenbrookes Lab) • Confirmatory testing performed at Central Middlesex Hospital

6. Lessons learned…… Like all good girl scouts…………..

7. Expected prevalence of SC&T HTA (2000) estimated 175 affected births nationally Predictions indicated 2.4 affected babies per year in Essex. However, from June 2004 to October 2006 • Affected babies = 21 • Carriers identified = 388 (approx) (mainly FAS, FAC, FAE, FAD)

8. Impact of Screening • Carriers / affected • Workload • Counselling issues • Appropriate care

9. Antenatal Screening Results 2007-8 Approximated data from maternity units shows the following: • <50,000 women screened • Approx 700 carriers identified • Approx 600 fathers tested • 88 ‘at-risk’ couples identified • 12 Prenatal Diagnosis performed

10. Newborn Screening Results 2007-8

11. Where are the affected children? Demonstrates regional variation 1 • Services to suit need • Variation in knowledge and awareness • Lack of services • “Starting from scratch” 2 8 8 6 (April 2007 - March 2008)

12. Prior to implementation… • Preparation! • Establish commissioning arrangements • Identify leads at each level – form implementation group (strategic and local) • Agree start date - timescale to suit all areas • Consider timescales for implementation of other screening programmes • Communication between all disciplines/areas involved • Local implementation arrangements

13. Issues for consideration… • Professional information and training • Early access / booking • Media strategy ‘launch’ • Audit and Monitoring arrangements • Arrangements for diagnosis / follow up • Counselling arrangements • Policies and Pathways • Transfused babies • Child Health Record Departments - recording of results - use of status codes

14. Education & Training • Regional / local training events essential • Appropriate and implementation specific training • “Training the Trainer” • Information for all HCPs including HVs / Midwives / NNU / CHRDs / GPs / Laboratories • Use available resources: • CD Roms – “Fast-Track” training • Screening Choices • PEGASUS – including Specialist Course attendance

15. Screening programme has led to: Earlier bookings to fit in with Maternity Matters & other screening programmes Increased awareness of the condition and of genetic inheritance patterns Improved interpretation of family origins Improved interpretation of lab findings Improved commissioning arrangements Collaborative working Named Leads at all levels Enhanced communication pathways Appropriate and timely information Improvements in locally delivered care ‘Benefits’ from Screening

16. Screening outcomes have identified the need for: Link between antenatal & newborn Specialist Care provision Counselling provision Education & Training Reporting mechanisms Audit & monitoring ‘Benefits’ from Screening

17. Progress made in East of England….. • Antenatal high and low prevalence screening • Universal Newborn screening • Screening Pathways with specialist care • Specialist Nurses appointed • Nominated Health Visitors to give carrier results • Neonatal Units Guidelines for pre-transfusion sample • Performance management • Data collection

18. For Scotland? Use England for..…. - Experiences - Knowledge - Lessons learned - Resources (policies, care pathways, training, information, audit processes)

19. Thank you.. Jane Hibbert Regional Antenatal & Child Health Screening Coordinator East of England Mobile: 0787 652 6649 Jane.hibbert@esqa.nhs.uk www.screening.nhs.uk