The event, held in Bristol and organised by University Hospitals Bristol and Weston NHS Foundation Trust (UHBW) and North Bristol NHS Trust (NBT), was specifically aimed at young people with the neurological condition, which results from excess fluid in the brain and can cause increased pressure and potential damage.
It took place at Aerospace Bristol and brought together clinicians, patients and families.
Teenagers with hydrocephalus attended a Bristol NHS event at Aerospace Bristol. (Image: supplied)
Molly Perham, paediatric neurosurgical specialist nurse at UHBW, said: “This was the first event of its kind for young people living with hydrocephalus and their families, designed to ease the transition from paediatric to adult services, and it was a tremendous success.
“We were delighted to have support from the adult teams at Southmead and Plymouth, alongside representatives from charities and shunt manufacturers.
“The day gave young people and their families the chance to deepen their understanding of hydrocephalus, learn what to expect from adult services, and discover the range of support available to them.
“They were also able to ask questions and connect with other families navigating similar experiences.
“I think everyone, professionals included, came away having learnt something new.”
The event was supported by Bristol Royal Hospital for Children and Southmead Hospital, and included participation from the neurosurgical team at Derriford Hospital in Plymouth.
Around 30 families attended, with funding provided by Harry’s Hydrocephalus Awareness Trust (Harry’s HAT), the only UK charity focused solely on paediatric hydrocephalus.
Professor Steve Hams, group chief nursing and improvement officer at Bristol NHS Group, said: “The success of this event highlights the importance of collaboration across Bristol NHS Group, our specialist teams and partner organisations in supporting young people with hydrocephalus.
“This is particularly important at the critical point when patients transition from paediatric to adult services, helping to ensure continuity of care and the best possible long-term outcomes.”
The event featured talks from former patients and offered families the opportunity to ask questions and connect with other families.