18th April 2023
In this Voices blog, Caroline Coates, Chief Executive Officer of Harry’s Hydrocephalus Awareness Trust (Harry’s HAT), explains the charity’s “Get-A-Head” campaign; launched to raise awareness of hydrocephalus and the importance of head circumference measurements when there are concerns about a child’s head size.
In a survey of 750 new parents*, Harry’s HAT found only 20% were aware that measuring a baby’s head can help to identify hydrocephalus. The charity aims to address these worrying findings by raising awareness of the condition.
Harry is my fourth child. My partner and I set up Harry’s HAT in 2018 after Harry was diagnosed with hydrocephalus. The charity aims to educate parents about the condition, connect affected families, and fund frontline workers so they can improve care for patients with hydrocephalus.
The charity has grown very quickly; reinforcing the clear need for our work. Sadly, since launching, we have been contacted by many families who feel that opportunities to spot their child’s hydrocephalus were missed – simply because their child did not have their head circumference measured.
The outcomes for these children and their families have, in some instances, been devastating.
In many cases where children did not have their head circumference measurements recorded, the families simply did not have contact with a healthcare professional who was trained to measure their baby’s head and interpret the reading. This appears to be due to cutbacks; resulting in a lack of face-to-face contact, which has only been exacerbated by the COVID-19 pandemic.
We probed further and found that, in some instances, healthcare professionals were either unaware of the importance of head circumference measurements or were unwilling to do it. Many also acknowledged that they had not always communicated with families why it’s important to monitor head circumference over a period of time.
GET-A-HEAD Campaign
In June 2022, we started our Get-A-Head campaign.
The first phase of the campaign was launched in the House of Commons and focused on raising awareness of the importance of head circumference measurement to all new parents, expectant parents, and healthcare professionals.
The second phase launched in February 2023, and calls for an improved set of national standards so that no baby showing signs of hydrocephalus could slip through the net. This phase has highlighted the disparities in care and practice across the UK and calls for the following three key steps:
- CONTACT:
We want a minimum number of face-to-face contacts with healthcare professionals in the first year of a child’s life. This should be carried out by professionals who are trained to recognise the signs of hydrocephalus and, where there are concerns, to measure head circumference and interpret the results.This has recently been adopted in Scotland where health visiting teams are now committed to undertake eight visits with a family in the first 12 months of a child’s life. - COMMUNICATION:
We want Midwives, GPs, Health Visitors etc. to briefly explain why they perform each of the checks during visits or routine appointments. For example: Does the parent understand why their baby’s head circumference is being measured? Do they know when to expect this measurement to be taken again?
- CONCERN:
We want a review of the current NICE guidelines which discuss when and how a health professional should refer a child with concerning symptoms of hydrocephalus to a specialist team, regardless of postcode.
Find out more:
You can also order free copies of our head circumference information leaflets for both families and professionals by emailing [email protected]
Caroline Coates, Chief Executive Officer of Harry’s Hydrocephalus Awareness Trust (Harry’s HAT)
* New parents surveyed had children aged 0-12 months.
iHV Healthy Weight Healthy Nutrition Toolkit
For iHV members, the iHV Healthy Weight Healthy Nutrition Toolkit also contains a range of resources to support your practice, including webinars on growth and links to practice guidance.
To access the iHV Healthy Weight Healthy Nutrition Toolkit:
- iHV members should log into the main iHV website page
- Click on the iHV LEARN tab in the top right hand corner
- Once in iHV LEARN, select the Healthy Weight Healthy Nutrition Toolkit
- When in the Tookit, select the Cinema section where you find the following webinars:
- Healthy Weight Healthy Nutrition Webinar: Growth Monitoring
- Growth and Development Update for HWHN Champions
