Survey

We wanted to find out how NHS staff assess and treat children with special educational needs and disability to help them manage toileting. To do this we conducted an online survey with health professionals to find out what they do in their practice in the NHS. The responses from the survey helped to answer the following research questions:

How do clinicians assess bladder and bowel health of children and young people with neurodisability, their continence capabilities, and readiness for toilet training? Which clinicians are involved in assessments?
Which interventions do clinicians use or recommend to improve continence for children and young people with neurodisability and how are these individualised and evaluated and/or audited? Which clinicians are recommending, delivering or evaluating interventions?

We also surveyed families, school and social care staff about their experiences of using interventions to improve toileting, in order to answer the following questions:

How do families, school and social care staff consider and judge children’s readiness for toilet training and need for specialist assessment and/or interventions?
Which factors affect the implementation of interventions to improve continence, and what is the acceptability of strategies to children and young people and their carers?

We ran 4 parallel surveys with tailored questions about people’s approach to assessment, intervention and monitoring. Over 100 organisations helped us to publicise it.

Survey results:

Professionals described their different roles in assessing, enabling and evaluating continence.
Clinicians use a range of assessments and interventions tailored to the needs of the child.
Parent and child reports are the critical outcome.
There is variability in implementing care pathways.
Many health professionals rated access to support as easy but many parent carers reported it was unsatisfactory: “It is HUGELY difficult, most parents are unaware it even exists” (parent). “Despite being a nurse I was unable to find any service in our area…” (parent).
Toileting and transition to adulthood were an area of concern.

Survey

Read more in the report