ESPU-Nurses Meeting on Thursday 18, June 2026, 10:00 - 10:20
10:00 - 10:10
SN05-1 (NP)
Jennifer POWELL 1 and Lucy FERGUSON 2
1) Royal Manchester Children's Hospital, Paediatric Urology, Manchester, UNITED KINGDOM - 2) Royal Manchester Children's Hospital, Paediatric Psychosocial Service, Manchester, UNITED KINGDOM
PURPOSE
The benefits of peer support across a multitude of settings are well documented. The incidence of Bladder Exstrophy & Epispadias is rare and, as one of only two commissioned centres in our country, families face statistical and geographical barriers to meeting those facing similar challenges. A qualitative study exploring caregivers' experiences of having a child with these conditions highlighted the value placed on opportunities to interact and seek support from other families on the same journey (Ferguson, Soulsby and Hurrell, 2024).
MATERIAL AND METHODS
A group session was held on the hospital site for parents/carers of children under our service, with a diagnosis of Bladder Exstrophy and/or Epispadias. Twelve parents attended (group intentionally small to enable optimum interaction for attendees). Discussions were facilitated by nursing and psychology professionals around 4 key themes: difficult early experiences, a different experience of parenthood, a learning process and the importance of support. Following the session, families were asked to complete a socio-demographic and separate feedback questionnaire to explore their experiences of the group. All questionnaires were anonymous.
RESULTS
Feedback was positive, with families highlighting the benefit of networking with others, hearing individual journeys and feeling less alone; 92% of families felt more connected and 100% of attendees said they would recommend to others. Most attendees were from the local area, and we recognise barriers to attending face-to-face sessions. Parents talked about wanting to lead more discussions, reducing the need (and opportunity) for professional support.
CONCLUSIONS
Parents valued the opportunity to meet with others navigating a similar journey. This presents one example of a peer support group, facilitated by the clinical MDT. Group sessions are an efficient use of professional time and enable an MDT approach to information giving, without the time constraints of an outpatient clinic. Whilst face to face groups are preferrable, this can reduce engagement due to practicalities of travelling to the hospital (exacerbated by the large geographical area covered by our service). Further exploration of virtual platforms must be considered, to benefit a wider patient demographic. Parents are keen to lead discussions, which should be respected when planning future groups.
10:10 - 10:20
SN05-2 (NP)
Harriet CORBETT 1 and Rachel ISBA 2
1) Alder Hey Children's NHS Foundation Trust, Regional Department of Urology, Liverpool, UNITED KINGDOM - 2) Alder Hey Children's NHS Foundation Trust, Liverpool, UNITED KINGDOM
PURPOSE
Ketamine induced uropathy (KUI), typically seen in young adults with chronic high volume recreational use, was first described in 2007. The majority of sufferers are males in their mid-20s. Recreational use has increased in the UK, with a shift in demographic to those with greater social deprivation. Unfortunately, age of use has fallen, necessitating a dedicated clinic in association with a paediatrician with addiction expertise for children & young people (CYP) < 16 years in Merseyside. Our aim is to report our experience of managing this patient cohort to date.
MATERIAL AND METHODS
Analysis of a database of demographics and investigation results for all referrals for KIU. The database has been maintained prospectively since May 2025 with retrospective data entry for prior patients.
RESULTS
A single patient was referred in 2023, nine in 2024 and 47 in 2025; 70% were female. Median age at referral was 14.5 years, range 13-15. 39 patients have attended to date, two refused. Data re volume of ketamine use is poor, the CYP have poor recall or are reluctant to say. Age at first use (known in 25/41) was predominantly 12-13 years. 35/41 (85%) have a history of adverse childhood experiences and/or ADHD/ASD. Symptoms are predominantly pain and storage related with extreme nocturia, frequency and urgency, making urinary tract ultrasound scan (USS) poorly tolerated. 47 have had at least one USS, median bladder volume 86mLs (IQR 55-212); 16 have had 2 or more USS to monitor bladder wall thickening/hydronephrosis/very low capacity. Three who had stopped use have improved capacity and symptoms, the remainder have median capacity 69 mL (IQR 47-116) on most recent USS. Three with severe symptoms/USS have had cystoscopy and urodynamics: maximum capacity ranged from 50-120mLs, associated with extreme pain. 3/10 reported benefit from anticholinergics, 4/10 reported benefit from mirabegron, 2/6 reported benefit from pentosan-polysulphate. Five have been discharged due cessation of use and symptom resolution.
CONCLUSIONS
KIU in CYP is an emerging problem and strongly associated with adverse life experiences and/or neurodiversity. USS of the bladder is difficult to tolerate which subjectively correlates with symptoms. In those most severely affected support is vital to help break the ‘bladder pain – take more ketamine’ cycle. Bladder symptoms may recover with cessation, but longer-term data is needed.