JustBeingCP

As someone living with Hydrocephalus, I am pleased that the Ministers and their departmental officials at the Department for Health and Social Care recognise the impact of the condition on those living it.

Those of you reading this may remember that on October the 14th last year I wrote to the Ministerial team at the Department (for Heath and Social Care) raising concerns regarding public awareness of Hydrocephalus and what to do if you come across someone in public displaying symptoms of it.

Ministers replied to my call for a national awareness campaign surrounding the condition in November (2025) by saying they have no plans to deliver this, check out my blog on this here: https://just-being-cp.co.uk/2025/11/13/the-department-for-health-and-social-care-currently-have-no-plans-for-a-national-awareness-campaign-on-hydrocephalus/

Today (Thursday, April the 16th 2026) I received further correspondence from the Parliamentary Under Secretary of State for Public Health and Prevention on this after my Member of Parliament, Jesse Norman asked for further points to be considered on this in March.

In there latest response on the issue the Minister said that they appreciate my continuing concerns and would like to thank me for raising them, she went onto add that we (The Department for Health and Social Care) have taken action regarding some of the concerns raised by Harry’s Hydrocephalus Awareness Trust about inconsistent delivery and poor explanations of measurements to parents through our recent refresh of the Healthy Child programme guidance. The guidance includes:

• the clinical importance of all health visitor health and development reviews conducted in person and ideally in the home;
• that head circumference is part of growth monitoring in line with National Institute for Health and Care Excellence guidance; and
• the importance of explaining the purpose of weighing and measurements, and discussing results with parents, in all health and development reviews.

These changes are intended to improve consistency and ensure parents understand why measurements are taken and what the results mean, added the Minister.

There are still no plans for a national awareness campaigning surrounding the condition, reiterated the Minister, this is something that I feel needs to change as soon as possible.

I have just asked the office of my MP (Jesse Norman) to ask the DHSC why there is next to no mention within either of their responses on the matter to adults within the condition, this is why there 100% needs to be an awareness now and not in 5 or 10 years time.

Hydrocephalus can be fatal if left untreated!!!!!!!

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It is only right that I once again take this opportunity to thank all those involved in getting a much needed response to this important matter on my behalf, which has not gone unnoticed and Is of course very much appreciated as always.

Finally, thank you to each and everyone of you, my regular loyal readers and social media followers who continually take the time out of your busy schedules to read my latest posts, it does not go unnoticed and is as always very much appreciated.

Cam