July 2024 – Update Newsletter

Review update & next family meeting

Since the Review started in September 2022, 1,933 families have joined the Review. We have now held over 174 individual family meetings. Following the meeting which took place on Saturday 15th June, so many families told us that the day was informative and supportive and would like us to host more meetings. The next meeting will be held on Saturday 19th October. The venue is yet to be confirmed, and we will update you when we have more details. We hope to see as many of you there as possible, should you wish to come.

Charity of the Month – Harry’s Hydrocephalus Awareness Trust (Harry’s HAT)

We are always looking for different ways to support families that are part of the Review. This month a family reached out to our team asking if we could provide you with more information about charities that support those with disabilities; July’s Charity of the Month is Harry’s Hydrocephalus Awareness Trust (Harry’s HAT).

We are Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) a user-led national charity, which supports children and their families affected by hydrocephalus. Hydrocephalus is a condition where excess fluid builds up in the brain. While it can occur at any age, it’s particularly crucial to detect it early in infants. Every year in the UK around 1 in every 770 babies will develop the condition and whilst there is no cure early detection can make a significant difference. As a charity we raise awareness of the condition, support front-line workers to learn more and so enhance patient care and provide support to families through signposting and peer support. We also campaign for better awareness of infant head circumference measurement through our Get-A-Head campaign. https://harryshat.org/get-a-head/

Requesting medical notes from NUH

NUH have recently updated the way that you can request your medical notes. They must be requested using the online portal or by filling in the form that is made available on their website. The request must come directly from you as the patient. It will then be formally logged by the Trust and responded to.

Online portal: https://trustportal.nuh.nhs.uk/

Where to find the form: https://www.nuh.nhs.uk/data-requests-yourprivacy

Email address to send the form to: nuhnt.dutyin@nhs.net