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An integrated paediatric continence service

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Author June Rogers, MSc, BA, RSCN, RN, is paediatric continence adviser, Liverpool PCT.

Abstract Rogers, J. (2008) An integrated paediatric continence service. Nursing Times; 104; 13, 70–71.

June Rogers, winner of the 2007 NT Continence Award, describes the process of developing an integrated continence service.

The need for integrated continence services was first highlighted in Good Practice in Continence Services (Department of Health, 2000). Despite DH recommendations, integrated continence services are still slow to develop and integrated paediatric continence services are virtually nonexistent.

In 2003, I led a scoping exercise to identify best practice within paediatric continence services in England. Although this did identify areas of excellence, overall services for children with continence problems were patchy and many appeared to be no more than a free nappy service. The findings of this work led to the publication of Good Practice in Paediatric Continence Services – Benchmarking in Action (NHS Modernisation Agency, 2003) which informed the children’s national service framework (DH, 2004).

The children’s NSF recommended that: ‘An integrated community-based paediatric continence service, informed by Good Practice in Paediatric Continence Services, ensures that accessible, high-quality assessment and treatment is provided to children and their parents/carers in any setting, including, for example, looked-after children and children at boarding schools’ (DH, 2004). A number of exemplars, linked to the children’s NSF, have been developed. These include an example of the journey through services that a child with continence problems should experience (DH, 2007).

Reviewing services at Liverpool PCT

I was seconded to Liverpool PCT at the end of 2004 to help develop an integrated continence service.

A benchmarking exercise was carried out in January 2005 to review the service and identify what needed to be done. This looked at not only the provision of continence products but also services for children with nocturnal enuresis, constipation and soiling, daytime wetting and delayed toilet training. All documentation was reviewed and gaps were identified in the referral pathways.

The service was ‘disease-orientated’ rather than ‘child-centred’, with children with different continence problems being seen by different services. There was a stand-alone service for children with enuresis, led by school nurses, but there was no clear community based service for children with daytime problems or constipation. These children were either seen in secondary care or managed on an ad hoc basis in the community.

The provision of continence products for children was inconsistent, with no clear policy or guidelines, and many children appeared to receive products without a full continence assessment.

There were no formal pathways between primary and secondary care and children were not followed up. Stronger links needed to be made with the acute trust so we could develop a consensus of opinion about assessment and treatment plans and referral pathways. Good communication with all relevant agencies was important not only to avoid inappropriate
referrals but also to develop a child-centred and family focused approach.

The majority of children with continence problems can have their needs met in the community and developing such services is a priority for many PCTs. Being seen closer to home was a priority for many families.

Communication with medical colleagues in primary care and the acute sector was important, particularly when we were developing prescribing guidelines. Essentially it was important for all disciplines to feel ownership of the service and be involved in its development, rather than having it thrust upon them.

Taking the service forward

Continence does not have a high priority within government targets. Related issues such as waiting times, inappropriate referrals and costs were used to help engage with others in the PCT.

Improving provision of continence products

The first area that needed to be addressed was the provision of products to children with intractable incontinence. Policies and guidelines were developed and the age for provision of products was raised from three to four years. This not only fitted with the recommendations in Good Practice in Continence Services but also gave more opportunity to implement toilet-training programmes.

Children had to have a full continence assessment and trial of potty training, if appropriate, before products were supplied. I initially carried out assessments until the health visitors had been trained. However, as it worked so well with just one person responsible for product provision, it was decided that this should continue.

Health visitors are still involved with potty training and supporting toilet-skill development programmes. The range of continence products was increased to include washable trainer pants as well as toilet-training equipment, such as musical potties and enuresis alarms.

This approach has dramatically increased the number of children who are toilet trained. For example, of 59 children referred for free nappies, only nine were actually supplied with them, with the rest undergoing successful toilet training. Previously all children would have been given nappies, which would have been inappropriate in the majority of cases.

None of the families complained about the stricter criteria that meant that they were no longer eligible for free nappies. In fact, the self-referral rate from parents to the service increased by almost 100%.

Linking in with school nurses

A link nurse role was developed within the school nursing service for children with nocturnal enuresis. The aim was to enhance the service, which was led by two part-time school nurses.

Monthly meetings were set up for clinical support and case reviews and educational meetings arranged every three months.

Meetings were held at lunchtimes to reduce the impact on the working day. An annual half-day study session is held, which all school nurses are encouraged to attend. In conjunction with the Learning and Development Bureau at the PCT, the range of study sessions has increased and includes constipation, soiling and toilet training.

Children with enuresis are now seen and managed more holistically so that associated issues such as constipation or daytime wetting are also addressed.

Linking in with secondary care

The benchmarking exercise identified that the majority of children with constipation were being referred to the acute trust and a number who experienced soiling associated with constipation were also being referred to child and adolescent mental health services (CAMHS).

The majority of children’s constipation was functional or idiopathic constipation in nature, with no underlying organic cause. Consequently, these children did not require referral to specialist secondary care. The treatment they received in secondary care varied according to the consultant they saw.

Following many months of meetings and negotiations, a core group of consultant paediatricians agreed that the majority of children with functional or idiopathic constipation should be managed in the community. Standardised assessment and treatment guidelines were developed based on the IMPACT paediatric bowel care pathway (IMPACT, 2005).

Clear management guidelines were also developed and strong links forged with CAMHS, the learning disability team and the paediatric walk-in centre to facilitate joint working.

Education and awareness-raising sessions were also provided for GPs.

All children with functional constipation are now referred to the paediatric continence service and have been successfully managed
in the community.

Conclusion

The ultimate aim of the service redesign was to put in place a comprehensive, proactive paediatric continence promotion service.

Children are seen more appropriately by the right professional. For example, some only require basic advice and support, which can be provided by the school nurses and health visitors. This means that children who require more complex interventions can be seen more promptly by
the paediatric continence service. We have reduced community waiting times to almost nil and the service is working towards meeting all key NHS directives.

Strong links with the early years service have facilitated early intervention for children with special needs, and healthy bladders and bowels are promoted at all times. Inappropriate referrals to secondary care have been greatly reduced, while treatment outcomes have improved.

References:

Department of Health (2007) Children’s Continence Exemplar. London: DH.

Department of Health (2004) The National Service Framework for Children, Young People and Maternity Services. London: DH.

Department of Health (2000) Good Practice in Continence Services. London: DH. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4005851

NHS Modernisation Agency (2003) Good Practice in Paediatric Continence Service – Benchmarking in Action. London: NHS Modernisation Agency. www.cgsupport.nhs.uk/PDFs/articles/good_practice_paediatric_continence_services.pdf

IMPACT Paediatric Bowel Care Pathway (2005) Copies available from mss@norgine.com

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