Harry’s HAT is welcoming the findings of the Independent Investigation into Maternity and Neonatal Services in England. As a charity supporting children and families affected by paediatric hydrocephalus, we are particularly encouraged by the report’s emphasis on listening to families and placing them at the centre of safer, more effective care.
For the families we support, the earliest stages of healthcare can have lifelong consequences. The investigation reinforces the need to take parental concerns seriously, improve communication, consistently follow clinical guidelines, and ensure families are empowered with the knowledge they need to advocate for their children.
IT’S TIME TO GET-A-HEAD
Our Get-A-Head campaign highlights the vital role midwives play in recording a baby’s first head circumference measurement and plotting it in the Red Book. This measurement provides an essential baseline against which future growth can be monitored. Failing to get these fundamental steps right is like falling at the first hurdle, and can potentially affect the healthcare journey of a child who later goes on to develop hydrocephalus, or another neurological condition.
Head circumference measurement is more than a clinical task; it’s an opportunity to educate and empower parents. Families should understand why the measurement matters before they leave hospital. They should be informed about the signs and symptoms to look out for and know when to seek further medical advice.
Through the Get-A-Head campaign, we will continue to raise awareness of the signs and symptoms of hydrocephalus, champion improved education and communication between healthcare professionals and families, and advocate for maternity and neonatal services where every concern is valued and heard.
As a user-led charity, Harry’s HAT sees first-hand the devastating impact that delayed diagnosis and missed opportunities can have on families when parental concerns are not listened to. The experiences highlighted throughout this investigation reinforce a message we hear repeatedly from the families we support: parents are often the first to recognise that something is wrong, and their concerns must be treated as an essential part of safe and effective care.
