There are no plans for a national awareness campaign on Hydrocephulas says the Department for Health and Social Care. Those reading this may remember that I wrote to the ministerial team at the DHSC on October the 16th this year about the issue, this morning I received there response to my concerns which I have set out below.
The Secretary of State for Health and Social Care met with representatives of an awareness charity for the condition in November 2024.
Minister Ashley Dalton who is responsible for Public Health and Prevention at the department also added that NICE (National Institute for Clinical Excellence) has produced guidance on the recognition and referral of suspected neurological conditions, which was updated in October 2023.
She added that the guidance covers the initial assessment of symptoms and signs that might indicate a neurological condition, such as hydrocephalus. This helps non specialist healthcare professionals to identify people who should be offered referral for specialist investigation.
Children with a head circumference measurement that differs by two or more centile lines from a previous measurement on a standardised growth chart should be referred to paediatric services for assessment and cranial imaging to exclude progressive hydrocephalus as a cause.
Additionally, if a child has any signs or symptoms of raised intracranial pressure (tense fontanelle, sixth nerve palsy, failure of upward gaze, vomiting and ataxia) they should be referred immediately to paediatric services. The NICE guidance also states that adults who have difficulty initiating and coordinating walking (gait apraxia) should be referred to neurology to rule out normal pressure hydrocephalus.
At national level there are initiatives supporting service improvement and better care for patients with neurological conditions such as hydrocephalus, including the Getting it Right First Time Programme for Neurology.
NHS England has also established a Neurology Service Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services, concluded the ministers response.
I am still left with grave concerns following this response as not all members of the public will access the website of the National Health Service (NHS) to read up on the symptoms of this potentially fatal condition, if left untreated when an issue occurs.
This afternoon I have written once again to the department where I have outlined the concerns that I have with the information provided in there response to my original letter, there needs to be more public awareness of the condition now and not when it suits.
Members of the public will only be looking to identify the symptoms that are being presented by someone in crisis and not what the likes of NHSE and NICE are doing to improve the care given to patients.
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It is only right that I thank the incredible team on ward 10 at Birmingham Children’s Hospital who saved my life on a number of occasions whilst I was under there care, it has not gone unnoticed and is of course very much appreciated.
Legends is the only way that I can describe each and everyone of you for the work that you do on behalf of the children and young people of the Midlands and beyond – Thank you for what you have done and continue to do every single day!!!.
A thank you must go to each and everyone of you, my loyal readers and social media followers who continually take the time out of there busy schedules to read my latest posts, it as always doesn’t go unnoticed and is very much appreciated.
Cam
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