Health Secretary to review whether UK should offer babies more routine head measurements to screen for brain conditions

We can exclusively reveal the Secretary of State for Health and Social Care is looking to review how often babies have their heads measured in the UK, as part of the basic routine screening for brain conditions in infancy.

Following pressure from charity campaigners at Harry’s Hydrocephalus Awareness Trust (Harry’s HAT), Wes Streeting MP has agreed to seek advice on if the UK should be offering more routine head measurements in a baby’s first year - in addition to the two already advised by NICE and the Royal College of Paediatrics and Child Health.

Head measurements are a basic diagnostic tool used to help identify various brain conditions, including hydrocephalus - which often presents as an unusually large or rapidly growing skull. The life-threatening condition involves an abnormal build up of cerebrospinal fluid (CSF) in the ventricles of the brain, and is sometimes referred to as 'water on the brain.' Left untreated, it can cause devastating brain damage, and even be fatal.

The routine monitoring of infant head size across Britain currently includes a circumference measurement at birth and ends with a further check when a baby is 6-8 weeks old. That’s despite research by Harry’s HAT which has revealed other countries measure far more regularly throughout the first year of life.

In Norway, 11 measurements are taken across a child’s first year, in Finland it’s taken 10 times and in the United States, eight measurements are routinely documented.

In an exclusive interview, Wes Streeting MP told us this is an important patient safety issue: “It's vitally important that babies are diagnosed as early as possible so they can get the treatment they need, and in fact I'll be seeking advice from the National Institute for Clinical Excellence and the Royal Colleges on a clinical review of the current guidelines surrounding infant head circumference.

“We're determined to make sure all families get the help they need in making sure their babies and young children are healthy. Every family with a baby should be offered five visits by health visitors over the course of two and a half years, with more for those who need it and we're going to make sure that happens.

“I'm really grateful for the work that Harry's HAT are doing, not just to support babies, children and their families, but also to shine a spotlight on this really important patient safety issue.”

Harry’s HAT supports nearly 900 children and families affected by paediatric hydrocephalus in the UK, many of whom have received a late diagnosis and as such have ongoing and often severe disabilities. Their Get-A-Head campaign was initially launched in 2022 to raise awareness of the importance of infant head measurements, before going further with its ambition to improve baby health care.

The charity has the support of neurosurgeons up and down the country, with a consultant from every paediatric neurosurgery centre in the UK having signed an open letter to the Heath Secretary earlier in the year, calling for this review. Nearly 25,000 signatures from members of the public have also been collected in support of improved routine monitoring of infant head size.

Caroline Coates is the founder and CEO of Harry’s HAT, as well as being a mum of four, including to 7-year-old Harry – who has hydrocephalus himself: “What we’re asking Wes Streeting and his team to do is to review the UK guidelines and see – is it good enough that we’re offering babies two measurements in the first year of life? Should we be doing more? And he’s going to answer that question.

“We’re not medically trained, but we do have the support of paediatric neurosurgeons who say that two head circumference measurements in the first year of life isn’t enough. Head circumference measurement is a key way of identifying babies showing signs of hydrocephalus and other serious brain conditions and we know that the earlier a child is diagnosed, the better.

“I see the impact and the consequence of late diagnosis every day, and it’s dire. In the worst case scenario we’re talking about loss of life, but mostly we’re talking about significant brain injuries. It will still be a life-threatening condition, even with early diagnosis, but those children that are diagnosed quicker seem to do better.”

Caroline met with the Health Secretary to make the case for more head measurements alongside fellow hydrocephalus mum and Harry’s HAT trustee Victoria Glover, as well as her local MP and Speaker of the House of Commons, Sir Lindsay Hoyle.

Victoria said: “We’re so grateful to have been given the opportunity to speak directly with the Health Secretary. We shared our own experiences and the research that supports this campaign, and it was really pleasing and a huge relief to receive such a positive response.

“As my MP, Sir Lindsay has been a strong advocate for the improvements we’re trying to make to baby health care, and in securing this meeting he’s opened the door to the possibility that we will be successful in this campaign. I know that we will continue to push until we see those vital improvements for families, that we feel so passionate about.”