Specifying a paediatric continence service
The key components of a paediatric continence service are:
- early identification, assessment and initial treatment of children and young people with continence problems
- managing long-term continence problems in children and young people
- developing a high-quality integrated paediatric continence service.
Early identification, assessment and initial treatment of children and young people with continence problems
The children's health and social care workforce has an important role in encouraging parents and carers to seek timely help from healthcare professionals if they suspect that a child may have idiopathic constipation, bedwetting or daytime wetting, or may benefit from additional support with toilet training. Therefore health and social care commissioners should work collaboratively with the wider children's workforce, including children's centre staff and nursery nurses, to ensure that they have opportunities to improve their awareness of children's and young people's continence problems. When planning services, commissioners should address the needs, location and availability of services for parents and carers from deprived communities and from black and minority ethnic groups, since they are less likely to access treatment for their children. NICE has developed frequently asked questions for staff in children's centres to raise awareness of idiopathic constipation.
When commissioning a paediatric continence service, commissioners should specify that all primary healthcare professionals who work with children and young people and their families or carers, including GPs, health visitors and school nurses, are able to identify continence problems and provide initial assessment, primary treatment and/or referral in accordance with NICE clinical guidelines CG99 on constipation in children and young people and CG111 on nocturnal enuresis.
NICE has developed history-taking questionnaires that may assist healthcare professionals to assess children and young people with suspected constipation. This may help to provide a structured approach to identifying diagnostic criteria and signs of underlying conditions, and ensuring appropriate treatment or referral.
Commissioners should ensure that treatment pathways enable primary healthcare professionals to identify and refer the following children and young people to an appropriate specialist service:
- A child who has not responded to treatment: NICE clinical guideline CG99 on constipation in children and young people recommends referring children and young people with idiopathic constipation who do not respond to initial treatment within 3 months to a locally identified practitioner with expertise in the problem. NICE clinical guideline CG111 on nocturnal enuresis recommends referring children and young people with bedwetting that has not responded to courses of treatment with an alarm and/or desmopressin for further review and assessment of factors associated with a poor response.
- A child who has ‘red flag' symptoms: NICE clinical guideline CG99 on constipation in children and young people recommends that children and young people with ‘red flag' symptoms that indicate an underlying disorder or condition that is not idiopathic constipation should be referred urgently to a healthcare professional with experience in the specific aspect of child health that is causing concern.
- A child who is suspected of being maltreated: children and young people may develop problems such as bedwetting as a response to emotional difficulties. NICE clinical guidelines CG99 on constipation in children and young people, CG111 on nocturnal enuresis and CG89 on when to suspect child maltreatment identify when child maltreatment should be considered. Local pathways should identify the action that should be taken if maltreatment is suspected.
There is evidence that, for most children and young people with idiopathic constipation, the psychological component of their constipation is likely to be secondary to the physical element. NICE clinical guideline CG99 on constipation in children and young people recommends that children and young people with idiopathic constipation are not routinely referred to a psychologist or child and adolescent mental health services (CAMHS) unless the child or young person has been identified as likely to benefit from receiving a psychological intervention. Therefore a commissioner may wish to ensure that systems are in place so that any child or young person for whom a referral to a psychologist or CAMHS may be considered appropriate is first assessed by the paediatric continence service. However, there is an established link between continence and behavioural issues, so commissioners should ensure that good communication exists between their paediatric continence service and their CAMHS.
In order that children and young people with continence problems receive timely referral and management of their condition, health and social care commissioners should collaborate to ensure that they include information about access to paediatric continence services in the service specifications that relate to the wider children's workforce, particularly child and family workers, social workers and foster carers. They may also wish to ensure that these services are able to raise awareness of continence problems among parents and carers within their communities, as well as encouraging self-referral.
In order to achieve optimal use of resources and to support NHS Quality, innovation, productivity and prevention (QIPP), commissioners should be aware of the assessments and interventions that are not recommended for clinical investigation of constipationin NICE clinical guideline CG99 on constipation in children and young people:
In order to achieve optimal use of resources and to support NHS Quality, innovation, productivity and prevention (QIPP), commissioners should be aware of the assessments and interventions that are not recommended at initial assessment for bedwetting in NICE clinical guideline CG111 on nocturnal enuresis:
Managing long-term continence problems in children and young people
Commissioners should ensure that their paediatric continence service works with children and young people, and their families or carers, to promote and achieve continence through proactive toilet training. The permanent or long-term use of continence products may be required for some children and young people, but should be considered only after other methods of management have not worked or are deemed inappropriate.
Because continence problems may take many months or years to resolve, commissioners should ensure that their paediatric continence service provides appropriate levels of ongoing support tailored to the needs of children and young people who do not respond to initial treatment. This support should be offered through a single point of contact with a specialist healthcare professional. Commissioners should also ensure that the service is accessible to children and young people, and their families or carers, both during treatment and after discharge. Commissioners are reminded that services should not exclude younger children (for example, those under 7 years) from the management of bedwetting on the basis of age alone.
When planning a paediatric continence service, commissioners should consider the needs of children and young people who have associated comorbidity, for example a disability or learning difficulty. Good practice in paediatric continence services recommends that paediatric continence services are fully inclusive and accessible for all children and young people regardless of age or disability, and that separate services should not be developed for children and young people with special needs.
Commissioners should ensure that locally agreed prescribing guidelines are in place so that oral medication for the treatment of constipation or bedwetting is prescribed in accordance with the recommendations of NICE clinical guidelines CG99 on constipation in children and young people and CG111 on nocturnal enuresis. It is anticipated that there may be an increase in the prescription costs for oral medication for constipation, including polyethylene glycol 3350 (Movicol), in primary care. However, it is also anticipated that these costs will be more than offset by a corresponding reduction in the number of inpatient and outpatient attendances for children and young people with constipation, as early treatment will prevent the problem from becoming a chronic condition.
In order to achieve optimal use of resources and to support NHS Quality, innovation, productivity and prevention (QIPP), commissioners should be aware of those assessments and interventions that are not recommended for the management of constipation in NICE clinical guideline CG99 on constipation in children and young people:
In order to achieve optimal use of resources and to support NHS Quality, innovation, productivity and prevention (QIPP), commissioners should be aware of those assessments and interventions that are not recommended for the management of bedwettingin NICE clinical guideline CG111 on nocturnal enuresis:
Developing a high-quality integrated paediatric continence service
Figure 1.1 of the 2004 Royal College of Nursing publication Is policy translated into action? provides an example of a model for an integrated continence service.
The Department of Health publication Good practice in continence services sets out a model of good practice to help healthcare professionals achieve more responsive, equitable and effective continence services. It suggests that one local strategic lead is made responsible for developing and implementing integrated care pathways across relevant healthcare sectors and their partner organisations. Therefore commissioners may wish to consider providing resources for a lead continence adviser to ensure a coordinated and consistent approach to identifying, assessing and treating continence problems across all settings within health and social care. This could include developing integrated care pathways, policies and protocols and agreeing to use a single assessment and referral form.
Commissioners should specify that health and social care professionals working in paediatric continence services are competent and skilled in assessing and managing continence problems in children and young people. They may also wish to consider making resources available for paediatric continence training.
Commissioners may wish to consider commissioning a paediatric continence service in a number of different ways, and mixed models of provision may be appropriate across a local health economy.
Commissioners should consider shifting the focus of investment for children and young people's bladder and bowel care towards community and primary care, thereby increasing productivity and reducing the number of unnecessary admissions to secondary care. A paediatric continence service may have the following characteristics:
- Be based in primary, community or secondary care. All services should be flexible, child-friendly and accessible to children and young people and their families, for example being delivered in a convenient location and providing telephone support and/or home visits. An example of a health visitor led service from Hounslow and Richmond Community Healthcare is provided in box 1 and an example of a school nurse led service from York Teaching Hospital NHS Foundation Trust is provided in box 2.
- Be delivered as a dedicated paediatric continence service or as a specialist paediatric service within an integrated whole-population continence service. Box 3 provides an example of an integrated paediatric continence service in Liverpool Community Health NHS Trust. The service should ensure good continuity of care between paediatric and adult services where long-term management is required. See also the NICE commissioning guides on faecal continence service, urinary continence service for women and service for the management of lower urinary tract symptoms in men.
- Be led by a multidisciplinary team of dedicated paediatric continence nurse specialists, school nurses, health visitors and/or paediatricians who are trained and experienced in the management of continence problems in children and young people. It may be possible to include health visitor or nurse prescribers.
- Have varying remits, from developing care pathways and providing training to the healthcare workforce through to managing complex cases.
- Promote the management of continence problems with partners in education and social care, such as appropriate fluid intake and diet, toilet training and ensuring accessible child-friendly toilets.
The health visiting team is ideally placed to provide first support to children and their families on toilet training. Initial assessments of children with continence problems are carried out in the home, with follow-up appointments provided in a clinic if needed for reasons of dignity and privacy. The health visiting team provides treatment in accordance with NICE guidance, including the appropriate use of laxatives, as well as continence information and resources. For children with more complex problems, referrals are made to a specialist continence nurse or to the specialist health visitor for children's continence and special needs.
Outcome: children achieve continence at an age appropriate to their development. Timely interventions to manage constipation prevent the situation progressing to chronic constipation, stool holding and disimpaction.
The York paediatric nocturnal enuresis service has 18 school health nurses, all trained by an enuresis nurse specialist in the assessment and management of bedwetting .
The school health nurses provide an assessment in the family home after school (this has led to very low ‘did not attend' rates) and first-line treatment for continence problems in accordance with NICE guidance. Monthly follow-up appointments are provided in the home, with phone support available between appointments. Children and young people who do not respond to treatment or who have comorbidities are referred to the enuresis nurse specialist.
Outcome: because the service is quick and easy to access, there are no waiting lists for treatment.
Liverpool Community Health NHS Trust has a lead paediatric continence adviser who works across primary care and links with secondary care healthcare professionals to provide a comprehensive paediatric continence promotion service that includes assessment, treatment, awareness raising and training for all staff. This has transformed the service from a fragmented continence-supply (‘free-nappy') service to a fully integrated paediatric continence promotion service in accordance with NICE guidance.
Outcome: health visitors and school nurses are more confident in dealing with children and young people with continence problems. They are proactive in starting first-line treatments, and refer the child or young person to the paediatric continence service when appropriate and in a timely fashion. Since the service started in 2005 the number of children and young people in receipt of free nappies has dropped from 700 to less than 300 per year, and the need for referral to secondary care for children and young people with idiopathic constipation has been virtually eliminated.
Further information about this service can be found in the Royal College of Nursing guidance Paediatric assessment of toilet training readiness and the issuing of products.
(Please note - these examples are offered to share good practice and NICE makes no judgement on the compliance of this service with its guidance.)
Commissioners should collaborate with clinicians, local stakeholders and service users, including children and young people and their parents or carers, when determining what is needed from a paediatric continence service in order to meet local needs. The service should be child-centred and integrated with other elements of care for children and young people with continence problems.
The service specification needs to consider:
- the required competencies of, and training for, staff responsible for providing the service
- the expected number of children and young people (this should take into account how quickly any changes in service provision are likely to take place)
- ease of access and service location; commissioners should engage with parents and carers and other relevant individuals and organisations locally
- care and referral pathways, including discharge and follow-up arrangements and smooth transition to adult continence services where required
- measuring outcomes
- information and audit requirements, including IT support and infrastructure
- planned service development setting out any productivity improvements including redesign, quality and equitable access
- address any safeguarding concerns and promote the welfare of children and young people
- other service remits, such as raising awareness of continence problems
- service monitoring criteria.
Useful sources of information may include:
- The standard NHS contracts for acute hospital, mental health, community and ambulance services.
- NHS Evidence: provides free access to clinical and non-clinical information - local, regional, national and international.
- The clinical knowledge summaries for nocturnal enuresis and constipation in infants and children.
- The NICE shared learning database offers examples of how organisations have implemented NICE guidance locally.
- Implementation tools for NICE clinical guidelines CG99 ‘Constipation in children and young people'' and CG111 Nocturnal enuresis'.
- The NICE guidance written for parents and carers on idiopathic constipation and bedwetting.
- NICE clinical guideline CG54 ‘Urinary tract infection in children: diagnosis, treatment and long-term management'.
- NICE clinical guideline CG89 ‘When to suspect child maltreatment'.
- The NICE template discharge advice that can be issued to parents and carers by primary healthcare professionals to provide information on the management of constipation at home.
- Web and published resources on childhood continence problems provided by a number of specialist organisations, including Education and Resources for Improving Childhood Continence (ERIC), PromoCon, Association for Continence Advice and the International Children's Continence Society.
- Continence training is delivered by a number of national organisations, including the Royal College of Nursing, Education and Resources for Improving Childhood Continence (ERIC) and the Association for Continence Advice.
- Factors involved in best practice in continence care are identified in the Good practice in paediatric continence services and the Department of Health's Essence of care: benchmarks of bladder, bowel and continence care.
1. National Collaborating Centre for Women‘s and Children‘s Health (2010) Constipation in children and young people: diagnosis and management of idiopathic childhood constipation in primary and secondary care. London: Royal College of Obstetricians and Gynaecology Press
This page was last updated: 02 March 2012