Registered Charity 1183086
We were delighted to hold our first Parliamentary Reception at the House of Commons on 15th June 2022, which was attend by over 130 people including Michael Gove MP, Dominic Raab MP, Mark Tami MP, Maggie Throup MP, and Ranil Jayawardena MP.
It was a perfect day, and the Terrace Pavilion looked beautiful in the glimmering sunshine. We were at the Commons at the invitation of Michael Gove MP to raise awareness of our charity, Harry’s Hydrocephalus Awareness Trust (Harry’s HAT), and stress the importance of head circumference measurement in infants. When plotted against a baby’s weight and height, head circumference measurement can be a key indicator of hydrocephalus and can help medics to undertake early intervention. As a recent survey revealed that only 18% of parents see their baby’s health visitor regularly in person, and that only 46% of parents had witnessed their health visitor measure their baby’s head, we know that there is key work to be done in this area.
I was absolutely delighted and honoured to host the parliamentary reception for Harry’s Hat at the House of Commons earlier this week. Harry’s Hat is a hugely important charity, which is providing vital support for children and their families who are affected by Hydrocephalus. It was so wonderful to see Caroline Coates again, the Founder of Harry’s Hat, and to meet some of the other brilliant people working to raise awareness of this condition and the importance of head circumference measurement in infants. I was also very pleased to see so many people there showing their support for these brave children and their parents, and it was great to see a number of other MPs attend too, as well as ministers from the Department of Health & Social Care.
At the event, we heard from many inspirational speakers including Michael Gove MP and Emma Pilling, who is Mum to four-year-old Charlie. Emma spoke passionately about Charlie’s delayed hydrocephalus diagnosis, and the impact that this has on Charlie and his future. We also heard from Neurosurgeon Miss Samantha Hettige, who highlighted the fact that key referrals to specialist neurosurgical centres have dropped in recent years, as fewer people are accessing health visitors and GPs post-COVID.
We also heard from Danielle Faulkner, who talked about her son James’ complicated journey with hydrocephalus. She explained the many challenges faced when caring for a child who lives with hydrocephalus, the significance of increased head growth as a sign of the condition, and the importance of strong relationships between families and medical professionals. Danielle’s impactful speech was followed by the President of the Society for Research into Hydrocephalus and Spina Bifida, Jaleel Miyan, provided key insights about the science behind the condition and the inroads which are being made into treatment. Finally, the event was closed by the CEO of the Hydrocephalus Association, Diana Gray. Diana had travelled from America to be at the event and to champion our collaborative work which aims to improve the lives of all children affected by hydrocephalus.
