Hampshire charity meets Government Minister in bid to end late diagnosis of serious brain condition in babies

A Hampshire based charity is in talks with the Government Minister for Public Health and Prevention, Ashley Dalton MP, over how to end the late diagnosis of babies with a serious brain condition, called hydrocephalus.

Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) is leading the ‘Get-A-Head’ campaign, calling on the government to increase the number of routine head measurements infants receive in their first year of life.

The metric is a quick and painless way to help identify the condition in babies, which is often characterized by an unusually large or rapidly growing head. Babies in the UK are currently offered two routine head measurements, before monitoring stops at eight weeks old.

The charity met with the Minister on Wednesday (24th June 2025), alongside the MP for North East Hampshire, Alex Brewer, following a question she raised in Parliament last month.

What is hydrocephalus?

Hydrocephalus is a serious and life-long condition, previously known as ‘water on the brain’. It involves a dangerous build-up of excess cerebrospinal fluid (CSF) within the ventricles of the brain, which can lead to permanent damage, and even death, if left untreated.

The condition affects approximately 1 in 770 babies in the UK, and although there is currently no cure, hydrocephalus can be managed with treatment. Most affected individuals are fitted with a device called a shunt, which can drain the excess fluid from the brain, to be absorbed in another part of the body.

Experts say early diagnosis goes hand in hand with better outcomes for patients, whilst late diagnosis can be associated with serious long-term disability, and the associated ongoing costs to the NHS.

Meeting the Minister

Alex Brewer MP secured the meeting with Ashley Dalton MP, Parlimentary Under-Secretary of Health and Social Care, following an oral question in the House of Commons in May.

She said: “Hydrocephalus is something that just isn’t very well known about and yet it affects the same number of children as are diagnosed with Down's Syndrome. Everybody knows what Down's Syndrome is, so it was really shocking to me to find out just how many children are affected by hydrocephalus. But the main difference is that with hydrocephalus, outcomes can be so much better with intervention. It’s instrumental in affecting the life chances for the rest of someone’s life.

“My own background working at a disability charity means I can really understand the health and economic benefits of sensible preventative policies that will improve health outcomes and save money for the NHS in the long run.

“Parents may know that their infant’s head will be measured, but you don’t really know why that is – certainly nobody explained that to me when I had my children. The campaign is about education and awareness, coupled with those more frequent measurements. Catching potential problems in the first few months rather than the first few weeks could be transformative.”

The outcome of the meeting

Speaking on how the meeting went, Alex Brewer MP says she’s hopeful that the research and lived experience of those working at Harry’s HAT will be taken onboard in the upcoming Government review of the Healthy Child Programme. “The minister was open to listening and really paid attention to the information that Harry’s HAT was able to provide. What was very clear in the room was that all of us who’ve had children had absolutely no idea why their head was being measured. That was a really important point of communicating to parents why this measurement is being taken. We know why babies are weighed, so we should also know what a healthy head circumference looks like to give an indication of a baby’s brain health.

“I think we can expect some significant further engagement; The minister is now aware of this condition and the problems with late diagnosis and I think we can expect ongoing communication about meaningful change.”

What is the Healthy Child Programme?

The Healthy Child Programme is the UK's national public health program, aimed at promoting the health and wellbeing of children from conception, up to the age of 19. It offers a framework of services, including health and development reviews, health promotion, parenting support, screening, and immunizations.

The Government is due to review and refresh the programme in the coming months.

How many routine head measurements do babies currently receive in the UK?

Current medical guidelines suggest two routine measurements for babies in the UK: one at birth and the next at the 6-8 week check, before routine monitoring stops altogether. That differs greatly from other developed countries, like Norway, where 11 routine measurements are taken across a child’s first 12 months, or Germany where 8 measurements are recorded as standard.

Caroline Coates, CEO of Harry’s HAT, is optimistic that the meeting with the Minister will lead to improvements in routine monitoring and an improvement in awareness: “I felt the meeting was really positive and seeing how our work can input into the new Healthy Child programme is really exciting. We felt we could align with the Minister about the importance of early intervention, and we were particularly pleased that they shared our concerns about the lack of communication with parents over why head measurements are taken in the first place."

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