Download Effective care pathways for haemoglobinopathy screening in

Inequalities in haemoglobinopathy screening
in London
Dr Nicole Klynman
Specialist registrar in public health
Commissioned and endorsed by the NHS Haemoglobinopathy Screening
Programme in collaboration with London Health Observatory
Care pathways for antenatal and neonatal
haemoglobinopathy screening in London

Commonest single recessive gene in the world

High prevalence results from high minority
ethnic population

In London :- babies born with ß thalassaemia
and sickle cell
National Policy

1988 British Society of Haematology guidelines

1993 Standing Medical Advisory Committee
report

1999-2000 DoH published two health technology
assessments

NHS plan
NHS Plan
“ A new national linked antenatal and neonatal
screening programme for
haemoglobinopathies and sickle cell
disease”
To be in place by 2004
Organisation of Services in
London

Neonatal programme (roll out 2003)
• Mixture of universal and selective screening
• Mixture of cord, capillary and dried blood spot screening
• Implications for laboratories service

Antenatal programme (roll out 4/04)
• Uses local laboratories
• Selective screening in some areas based on ethnicity
• Many areas already universal screening

Some hospitals have linked programmes
Methodology of Study

Information groups in acute trusts in London
• Haematologists, paediatricians, midwifery representatives,
haemoglobinopathy counsellors, obstetricians, GPs

Individual interviews
• voluntary groups, counsellors, genetic services,
independent hospitals and midwives

Models of good practice identified
Analysis of data

29 acute trusts in analysis

London-wide report based on questionnaire

Flow charts for acute trusts and key
recommendations at Strategic Health
Authority Level
Antenatal screening
Pre-screening information and booking
clinic

45% of hospitals give written information

Leaflets in English

Consent for screening
• 2 hospital written consent

Bookings
• >15 weeks
Antenatal screening

>50% minority ethnic women - 11/29

Co-ordination of screening programme
•
•
•
•
28% no programme coordinator identified
17% no named follow-up
20% no deputy
Laboratory - 90% named coordinator

Copies to GP - 59% hospitals

Processing time for samples - 3 hospitals >7/7
Antenatal screening

No counsellors
• 10 hospitals


Women re-screened in each pregnancy
Written confirmation
• Women (90% if trait, otherwise 21%)
• Partners (93% if trait, otherwise 73%)

Patient information
• in-house, APoGI, voluntary societies
Antenatal screening

Haemoglobinopathy cards

At risk couples
•
•
•
•
63% written information
50% counselling at >15/40
66% PND results within 1 week
Counselling after PND
Neonatal screening

Type of screening
• Dried blood spot screening programme
• Cord blood
• Capillary blood

Type of programme
• Universal
• Selective
• No organised programme

16
9
1
19
7
3
Results from dried blood spot screening
programme
Neonatal screening

Information to parents
• 89% at home
• 71% written information
• 48% not given trait information

Paediatric follow-up
• Named paediatrician
• Prophylactic treatment at 3/12

SCBU/blood transfusion
Emerging Issues

Clinical and laboratory service variations in
London

IT needs are enormous and will need sufficient
resources

Linkage of programmes currently almost
impossible in most areas

Lack of primary care involvement
Full report available :-
www-phm.umds.ac.uk/haemscreening
www.lho.org.uk