North West London faces significant challenges in providing equitable and consistent continence services for children and young people with special educational needs and disabilities (SEND), according to a recent report discussed at the North West London Joint Health Overview & Scrutiny Committee (JHOSC). The report, which reviewed current service models, highlighted gaps in provision and aimed to support the development of more person-centred care.

The Public Reports Pack offered a review of current service models, highlighted gaps, and supported the development of more equitable, person-centred care.

The report highlighted that children and young people with SEND often experience complex health and care challenges, including continence issues that can significantly affect their dignity, independence, and educational experience. Despite the importance of these services, continence care is frequently under-recognised and inconsistently supported across the region.

The Education & Resources for Improving Childhood Continence (ERIC) Children's Continence Pathway describes a three-tiered model for children's continence services:

  • Level 1: Universal services provided by health visiting and school nursing teams, and sometimes GPs, focusing on early identification, knowledge of continence milestones, and general advice.
  • Level 2: Children's Community Bladder and Bowel Service, a nurse-led multi-disciplinary team offering comprehensive assessments and specialist support. The NWL ICB is working to codesign and implement a common offer for bladder and bowel services for children and adults in every borough in north west London to reduce the current unwarranted variability of level 2 services.
  • Level 3: Medical assessment, involving paediatrician-led services for complex cases or safeguarding concerns. The NWL ICB is also exploring potential care pathway productivity and efficiency improvements with the acute provider collaborative as part of a common core level 3 continence offer in north west London.

A nurse assisting an elderly patient, representing healthcare services in North West London.
A nurse assisting an elderly patient, representing healthcare in North West London.

However, the report also detailed significant variation across North West London in the provision of these services. Families often report long waiting times and unclear referral pathways, making it difficult to access timely care. The report emphasised that effective continence services are crucial for improving quality of life, reducing hospital admissions, supporting school attendance, and alleviating pressure on families.

Parent-Carer Forums contributed to the report, highlighting the variable experiences of families across NWL. While some areas, like Brent, were praised for their co-production approach in setting up new services, others reported challenges such as blanket policies in schools restricting bathroom use and long waiting times for specialist input.

One parent expressed concerns about restrictive bathroom policies in schools, noting the anxiety and potential health problems these policies can cause for children, especially those with SEND. These policies can affect both primary and secondary school students. While the specific policies were not detailed in the report, the concerns highlight the need for a more flexible and understanding approach to bathroom access for children with continence issues.

The Directors of Public Health from various London boroughs also contributed, emphasising that school nursing services offer a Tier 1 level of support for continence, providing early advice and interventions, and recommending resources like the ERIC website.

To address these challenges, NWL ICB is working to implement a common offer for bladder and bowel services for children and adults in every borough, aiming to reduce unwarranted variability and provide all-age support. This work is being led by the community provider collaborative, with plans to develop an improved offer for children by 31 March 2026, building on the ERIC Children's Continence Pathway guidance and NICE guidelines. The report indicates that this development may involve several phases of work and service improvement to ensure adequate engagement and co-production with families in each borough.

The report suggests that standardising Level 1 services across Local Authorities could maximise value for money, improve workforce planning, and ensure continuity of experience for children needing support in different settings. It also identifies opportunities for NWL ICB to explore care pathway improvements with the acute provider collaborative, creating a common core Level 3 continence offer.