Health Secretary supports GET-A-HEAD campaign

There's a been a huge step forward for the GET-A-HEAD campaign as we reveal the Health Secretary is now supporting calls for improved baby health care across England.

Working alongside Harry's Hydrocephalus Awareness Trust (Harry's HAT), we're pushing for an improved set of national guidelines for the health care provided within the first 12 months of a child's life, which we believe would help to prevent the late diagnosis of babies with life threatening conditions, such as hydrocephalus.

Steve Barclay MP has paid tribute to the importance of the work, and agreed to meet to discuss moving the campaign forward.

"I very much welcome the campaign and I want to pay tribute to the work that has gone in to raising awareness of this important issue," he said.

"Something everyone will recognise is the importance of the wellbeing of babies, so that where there are warning signs, we can ensure that the right alerts and processes are in place.

"That’s why the funding that we're putting in to community diagnostic centres is so important because that will better enable us to ensure we get the diagnostic checks in place so we can respond more quickly when there are concerns. But it's also about raising awareness and I think the campaign is extremely important in doing so and I'm very happy to ensure that either myself or one of the ministerial team will meet with campaigners so that we can take this important work forward."

The GET-A-HEAD campaign is calling for health care improvements in three key areas:

CONTACT:

A minimum number of face to face contacts with health professionals who are trained to measure head circumference and interpret the result in the first year of a child's life. This has recently been adopted in Scotland, where health visiting teams are now committed to 8 visits with a family in the first 12 months.

COMMUNICATION:

Midwives, GPs, Health Visitors etc to briefly explain why they perform each one of their routine checks. For example - does the parent know why head circumference measurement is important and do they know when to expect this measurement to be taken again?

CONCERN:

A review of the current NICE guidelines which discuss when and how a health professional should refer a child with concerning symptoms to a specialist team.

The Health Secretary is the latest in a growing list of high profile politicians to support the campaign, alongside the House of Commons Speaker Sir Lindsay Hoyle MP, and the Women's Minister Maria Caulfield MP.

The Secretary of State for Levelling Up, Michael Gove MP said, “I echo my colleague Steve Barclay MP’s support for the GET-A-HEAD campaign. It is vital that babies, regardless of where in the UK they reside, have access to infant health and wellbeing checks. During these, their head circumference can be measured and the result interpreted by a trained professional.

"This simple practice is crucial in spotting babies showing signs of hydrocephalus. As we know, the earlier the condition is identified the better the outcome.”

Hydrocephalus is a life-threatening condition which affects approximately 1 in 700 babies. It's also known as 'water on the brain' and involves a dangerous build-up of cerebrospinal fluid (CSF) in the skull which can cause brain damage and death, if left untreated.

A rapidly growing skull is one of the key indicators of the condition and is often accompanied by additional symptoms; including unsettledness, sleepiness, vomiting and downward gazing eyes.

There is no cure for hydrocephalus, but it can be successfully managed with the insertion of a device called a shunt, which sits in the brain and artificially redirects excess fluid to another part of the body; usually the abdominal cavity.

It's widely accepted that early diagnosis of the condition leads to better outcomes for the patient. One of the key ways that health professionals can identify hydrocephalus is by measuring and documenting a baby's head circumference at routine check-ups over the course of a baby's first year.

Research by Harry's HAT has revealed a post code lottery of support across England for babies and their families, with many parents reporting that their child's head was not measured at any point in their healthcare journey.

Caroline Coates is the Chief Executive of Harry's HAT, a charity she set up alongside husband Matt in 2018, following the birth of their son Harry. He was diagnosed with hydrocephalus in utero and underwent several brain surgeries in the early months of his life.

The charity launched the first phase of the GET-A-HEAD campaign in 2022 with the aim to raise awareness of hydrocephalus and head circumference measurements among parents.

We then helped to launch the second phase of the campaign in February 2023, calling for specific improvements to the health care model, to give babies with hydrocephalus the best chance of early diagnosis.

Caroline said: “We are heartened that senior politicians are publicly supporting GET-A-HEAD .

"We encourage all those with influence to support our vital campaign which we believe will ensure that opportunities to spot babies showing signs of hydrocephalus, and other serious conditions, are not missed”.

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