1. Pregnancy Screening Pathway
Dr Surindra Maharaj
Consultant Obstetrician
NHS Lanarkshire
16 June 2009

2. Antenatal Screening for Sickle Cell & Thalassaemia Pathway
Screening for Clinically Significant SCD
Hb S; Hb SC; HbS/β-thal; Hb SD; Hb SO; Hb S/HPFH
Screening for Other Haemoglobinopathies
Β-thal major/intermedia; Hb H; Hb E/β thal; Hb SE

3. Other Clinically benign Haemoglobinopathies
HB C/β thal; Hb D/β thal; Hb DD; Hb CC; Hb CE; Hb DE; Hb EE
Several other variants will also be detected
There are >1,000 types/ Hb variants or mutations
Can be inherited in various combinations
Correct counselling is extremely important

4. Why are we Screening Now?
CEL 31
The introduction of haemoglobinopathy screening both during pregnancy and for newborn babies
NHS Boards will be responsible for implementing the changes in maternity and child health services required to deliver these improvements no later than 31 March 2011

5. Who to screen? Universal Screening vs Selected Screening
For Antenatal purposes, Scotland is considered as having a low prevalence for SCD (<1.5 /10,00 births with SCD)
A targeted screening programme, based on the Family Origin Questionnaire is proposed

6. SWMHR Redesign
Trigger Recognition
Conveying this Information
to laboratory
Use of IT/PMS to aid
these concerns
Rule/Logic based Data
Entry
Easy Lab access to
information
Means a change in how
ethnicity data is
collected and coded

7. When to screen Antenatally Before pregnancy
Pre-pregnancy counselling clinics
Assisted conception clinics
If screened before pregnancy, the results must be recorded and accessible for any subsequent pregnancy

8. Antenatal Pathway Unaffected Mother Affected Mother Carrier EXCLUDED
INCLUDED
Record in SWHMR

9. Aim to perform screening by 8-10 weeks
Included
Aim to perform screening by 8-10 weeks
Declines
Record in SWHMR
Consented
Accepts
TEAM: Obstetrician, Haematologist, Hb Counsellor, Midwife, Paediatrician

10. Patient Information Leaflet

11. Paternal Testing Mother declines Father declines or unavailable
Offer Counselling visit with Team Specialist to discuss risk
Declines
Accepts
Paternal test taken
Family Origin recorded
Consent for result release
Record in notes
Inform Obstetric team
Inform Paediatric team
note: the father himself may have previous results available

12. Paternal Test Accepted
Affected Father
Urgent appt
Counselling
Inform GP/Paeds
Unaffected Father
Record in SWHMR
Result to father/GP
Consultant
Haematologist
Carrier Father
Contact them to
offer further
Counselling

13. Counselling and Risk Discussion
Declines
Accepts
Record in Notes
Obs/Paed
Notification
Offer Prenatal Diagnosis
If appropriate
Declines
Record in Notes
Obs/Paed
Notification
Accepts
Prenatal Diagnosis
Clinical Genetics
Aim to achieve this
by 12+6 Weeks
Results of
Prenatal Diagnosis

14. Record Screening Status on Birth Notification
Results of
Prenatal Diagnosis
Unaffected Fetus
Record in SWHMR
Result to parents/GP
Affected Fetus
Counselling Visit
Options discussed
Carrier Fetus
Termination
Termination
Arranged
Continuing
Paediatric
notification
Neonatal Screen
Record Screening Status on Birth Notification

16. Potential problem areas?
We need earlier information dissemination and earlier booking
The majority of women book between 11-14
Major workforce implications
The issue of late bookers
We need for rapid testing, rapid reporting and rapid patient feedback
Small diagnostic and therapeutic window

17. Potential problem areas?
We need timely partner testing
We need timely reporting of PND
Glasgow and Oxford
Increased workload for midwives
Earlier bookings may mean more patients
Seeing women who would have miscarried had booking been later
KCND issues
Interpretation services

18. The Challenge for Antenatal Services
Staff Training and Awareness
Midwives
Obstetricians
Paediatricians
Haematologists
Identifying a Specialist Care Team
Assess the need/role for a Specialist Haemoglobinopathy Counsellor
The role of the screening coordinators

20. The Challenge for Antenatal Services
Reorganisation of antenatal services
Earlier booking required
Community awareness programmes
First contact
Pharmacies/Chemists
Midwives: Can the First Visit be abolished?
Telephone assessments
Royal Mail/IT/PMS/Remote Case Note Generation
GPs and GP receptionists
Information campaign

21. The Challenge for Antenatal Services
Reorganisation of antenatal services
Local laboratories and transport
Fast turnover and reporting is the goal
Report standardisation
Quality control and certification
Obtaining previous screening results
Central laboratories and communication
Glasgow
Oxford
Laboratory IT Links essential

22. The Challenge for Antenatal Services
Reorganisation of antenatal services
Who receives and gives the results to patients
The roles of:
Midwife
Hb Screening coordinator/practitioner
“Counsellor”
Timely referral to all of these HCPs
Expansion of clinical services
Clinics-antenatal and neonatal
PND/Genetics/Clerical support