Although it is commonplace to have Dads in the delivery room, men do not generally feature in antenatal care. This reflects practicalities rather than anything else – antenatal care is essentially about the health of the mother and baby.

This view is supported by a report produced by the Fatherhood Institute in 2010 for the NHS Sickle Cell and Thalassaemia Screening Programme, which found that men’s exclusion from antenatal care was a systemic problem and men are approached through existing methods of engaging women, which can be slow and ineffective.

Yet there are times when engaging Dads in the antenatal process is very important. For haemoglobinopathies like sickle cell and thalassaemia it is important to discover early in pregnancy whether or not the mother is a carrier for one of these conditions. If she is then the baby’s father should also be screened, because if he is a carrier too there is a one in four chance that their baby will have a haemoglobin disorder. Offering screening early in pregnancy gives parents a chance to have counselling if appropriate and to make an informed decision about whether to go ahead with prenatal diagnosis (PND) testing for their baby. NICE guidance (2008) says:

‘Screening for sickle cell diseases and thalassaemias should be offered to all women as early as possible in pregnancy (ideally by 10 weeks).The type of screening depends upon the prevalence and can be carried out in either primary or secondary care.’

To encourage men to feel a part of the antenatal pathway and to take part in screening, the Screening Programme has produced a leaflet called Tests for Dads. It explains what the test means for the man and his baby and why it is important for him to be screened. The Screening Programme is also developing a section on its website aimed at men, so they can search for information relevant to them.

To support its work, the Programme has produced a leaflet for health care professionals to explain sickle cell and thalassaemia screening, emphasising the importance of screening early in pregnancy.

Sickle cell and thalassaemia are inherited serious blood diseases which affect the oxygen carrying capacity of red blood cells. Sickle cell disease is the world’s most common serious inherited condition. The World Health Organization estimates that around 5% of the world’s population is a genetic carrier for sickle cell and thalassaemia. In England about 1 in 35 of all pregnant women is a carrier with just 56% of men who are offered screening taking it up. Sickle cell disease affects about one in every 2,000 births in England and it is estimated that there are more than 12,500 people with sickle cell disease.

The highest prevalence of sickle cell disease is among Black Africans and Black Caribbeans. Newborn screening data from the Screening Programme (2009/10) shows that one in seven babies of Black African origin and one in eight of Black Caribbean origin is a carrier. However, it is not possible to tell if someone is a carrier just by name and appearance. It is crucial to know from where in the world a person’s family originates. The Screening Programme is currently developing leaflets to explain what it means to be a carrier of different haemoglobins.

The NHS Sickle Cell and Thalassaemia Screening Programme has just celebrated its 10th anniversary. It is the world’s first linked antenatal and newborn screening programme and arguably the first genetic screening programme to be introduced to the NHS in England.

References

• National Institute for Health and Clinical Excellence (NICE) (2008). Antenatal care: routine care for the healthy pregnant woman. London: NICE.

• NHS Sickle Cell and Thalassaemia Screening Programme (2012). NHS Sickle Cell and Thalassaemia Screening Programme Data Report 2009/10. [due to be published 2012] London.

Further reading

• NHS Sickle Cell and Thalassaemia Screening Programme leaflets such as Tests for Dads and Information for Healthcare Professionals may be downloaded from www.sct.screening.nhs.uk and are available from Harlow Printing Ltd; Tel: 0191 496 9735 or email@ national.screening@harlowprinting.co.uk

Contributor: Claire Laurent, Communications Manager, NHS Sickle Cell and Thalassaemia Screening Programme, King’s College London
Image Credit: NHS Sickle Cell and Thalassaemia Screening Programme