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Clinicians 'must provide better information' about newborn blood spot screening

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Changes are urgently needed to the way parents are informed about blood spot screening for their newborn babies, according to new research.

Parents should be given information about screening in the third trimester so they can think about it and ask questions before the birth, researchers at the University of Manchester have said.

“Currently, parents are given a lengthy booklet….and midwives most commonly spend less than five minutes discussing newborn screening”

Professor Dame Tina Lavender

Instead of being provided with one long booklet explaining the screening, information should be given to parents in a range of ways and it should be made clear that they had a choice about screening, the research recommends.

Taking a blood sample soon after birth allows doctors to diagnose nine serious conditions such as cystic fibrosis and sickle cell within the first weeks of life.

It means that treatment and care can start immediately and also has implications for siblings and wider family members who may be carriers.

Professor Dame Tina Lavender, who was on the team that carried out the research, said healthcare professionals agreed there was a need for more effective communication.

“Currently, parents are given a lengthy booklet covering all screening early in pregnancy and midwives most commonly spend less than five minutes discussing newborn screening with parents after birth. Neither parents nor midwives in this study felt this was effective,” she said.

“Parents are distressed when they find out key information after screening has been conducted”

Dr Fiona Ulph

Meanwhile, Dr Fiona Ulph, who led the research team, also said the current approach left parents unprepared for their child’s diagnosis.

“Parents are distressed when they find out key information after screening has been conducted – such as that their baby’s blood sample is retained for future research purposes,” said Dr Ulph.

“It might have been helpful for the researchers to have considered the potential health visitor role in this as part of their antenatal visit”

Dr Cheryll Adams

Parents and midwives involved in the research agreed on the need to give information at third trimester, use different ways of informing people, and make clear that screening was not routine but that people had a choice in it.

The research was funded by the National Institute for Health Research. The report, entitled Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project, also suggested that the new approach could be more cost-effective than current practice.

The Institute of Health Visiting welcomed the report but said the role of health visitors should have been considered.

Dr Cheryll Adams, executive director of the IHV said: “This is very interesting research but I can’t help but wonder whether it might have been helpful for the researchers to have considered the potential health visitor role in this as part of their antenatal visit.

“That contact is timely being close to the birth and it could become part of a package of important information such as the immunisation programme which is discussed by the health visitor.”

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Readers' comments (3)

  • This is long overdue - when there is 30 minutes for checks on mum, baby, baby's weight and the neonatal blood spot test including informing and gaining parents consent this is always going to be very difficult - equally the uk is short of thousands of midwives and they are so stretched it is soul destroying knowing you need more time than you can find to care for families

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  • I know everyone is an individual, but I am stretched to understand why a parent would NOT want their baby screened for a disease that could at the worst be treated early and at the best, be prevented from affecting the child completely!

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  • I am presuming this research is into something that has been a routine procedure for the newborn for decades? Why now is there a problem with information to parents.
    The major conditions picked up and treated early include PKU, which if treated from the early diagnosis by diet, prevents the intellectual disability which resulted in a very compromised life...and hypothyroidism...similarly treated early leads to a normal life for the individual.
    Surely newborn screening is NOT new in the UK!!!!!!!!!!!!!

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