Quality statement 5: Access to specialist review

Quality statement

Children and young people whose bedwetting has not responded to courses of initial treatments are referred for a specialist review.

Rationale

If bedwetting in children and young people does not respond to courses of initial treatments, referral should be made for a specialist review so that the factors associated with a poor response (for example, overactive bladder, underlying disease, or social and/or emotional issues) can be assessed. Services that provide specialist reviews after courses of initial treatments have been tried for bedwetting may help to reduce the number of inappropriate hospital referrals, which will benefit the child or young person and may reduce costs.

Quality measures

Structure

Evidence of local arrangements to ensure that children and young people whose bedwetting has not responded to courses of initial treatments can access a specialist review.

Data source: Local data collection.

Process

Proportion of children and young people whose bedwetting has not responded to courses of initial treatments who are referred for a specialist review.

Numerator – the number in the denominator referred for a specialist review.

Denominator – the number of children and young people whose bedwetting has not responded to courses of initial treatments.

Data source: Local data collection.

Outcome

Reduction in inappropriate hospital referrals.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (such as GPs and NHS trusts) ensure that healthcare professionals are aware of agreed referral pathways to access a specialist review for bedwetting.

Healthcare professionals (such as GPs, school nurses and community nurses) refer children and young people who are bedwetting for specialist review if their bedwetting does not respond to courses of initial treatments.

Commissioners (such as clinical commissioning groups, local authorities and NHS England area teams) ensure that they commission services to provide specialist reviews for bedwetting with agreed referral pathways from primary care.

What the quality statement means for children, young people, parents and carers

Children and young people with bedwetting that hasn't improved after trying initial treatments (such as a bedwetting alarm and/or medication) are referred to a specialist who can provide extra support.

Source guidance

Definitions of terms used in this quality statement

Bedwetting that has not responded

Bedwetting has not responded to treatment if the child has not achieved 14 consecutive dry nights or a 90% improvement in the number of wet nights per week. The response to treatment should be assessed as follows:

  • The response to an alarm or desmopressin should be assessed at 4 weeks. If there are no early signs of response (smaller wet patches, fewer wetting episodes per night or fewer wet nights), treatment should be reviewed.

  • Children and young people should continue treatment for 3 months if there are early signs of a response at 4 weeks. If complete dryness is not achieved after 3 months, treatment should be reviewed.

  • Treatment with an alarm should only continue after 3 months if the bedwetting is still improving and the child or young person, and their parents or carers if appropriate, are motivated to continue. Bedwetting may continue to improve for up to 6 months with desmopressin but treatment should be withdrawn for 1 week after 3 months to check if dryness has been achieved.

[Adapted from NICE clinical guideline 111, recommendations 1.8.2, 1.8.4, 1.10.6, 1.10.11 and 1.11.3]

Courses of initial treatments

An alarm should be offered as first‑line treatment unless it is considered undesirable or inappropriate (for example, if bedwetting is very infrequent, that is, less than 1 or 2 wet beds per week, or the parents or carers are having emotional difficulty coping with the burden of bedwetting or are expressing anger, negativity or blame towards the child or young person).

Desmopressin may be offered to children and young people older than 7 years if an alarm is undesirable or inappropriate, or if the priority for the child is to achieve a quick short‑term improvement in bedwetting.

Consideration of which initial treatment is most appropriate will depend on the child or young person's age, the frequency of bedwetting and the motivation and needs of the child or young person and their parents or carers.

An alarm or desmopressin may be considered for children aged 5 to 7 years. The decision about suitable treatment for 5- to 7‑year‑olds should take into account the pattern of bedwetting as well as the child's ability, maturity, motivation and understanding of an alarm, their wider living circumstances and the views of their parents or carers.

If bedwetting does not respond to initial alarm treatment, courses of treatment with a combination of alarm and desmopressin and/or desmopressin alone may be offered depending on the response achieved and whether an alarm remains acceptable.

[Adapted from NICE clinical guideline 111 recommendations 1.4.5, 1.8.1, 1.8.8, 1.10.1, 1.10.2, 1.9.1 and 1.9.2]

Specialist review

Children and young people whose bedwetting has not responded to courses of initial treatments should be referred to the next step up in service that provides specialist continence reviews for children and young people (for example, from Level 1 in primary care, which provides basic advice and support, to a Level 2 specialist service that assesses and treats children and young people with more complex needs). The characteristics and setting for this service will depend on local arrangements.

An example of this type of service would be an integrated community paediatric service that treats bladder and/or bowel problems, and is delivered by a multidisciplinary team trained in managing continence problems in children and young people. [Adapted from Paediatric continence commissioning guide – Paediatric Continence Forum (2014)]

Equality and diversity considerations

When referring children and young people for a specialist review, any potential difficulties in accessing services, which may include distance, disability and financial barriers, should be taken into account.

When discussing treatment for bedwetting in children and young people with developmental or learning difficulties or physical disabilities, the healthcare professional should be aware that symptoms can be improved with the correct support and treatment.

The quality statement does not cover children younger than 5 years. The decision about whether to formally manage bedwetting in children younger than 5 years would be a clinical judgement; it would not be appropriate in all cases.