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26 September, 2022
This article discusses the creation of a new care pathway and associated resources to support children with constipation
To address geographic inconsistencies in paediatric constipation care, NHS England’s Excellence in Continence Care Programme Board and the National Bladder and Bowel Health Project formed a national intiative to create a new care pathway. Building on existing guidelines, it focuses on health promotion, early identification and intervention, and prevention, particularly in children aged 0-4 years. The pathway aims to reduce emergency admissions for constipation and related comorbidities, and improve confidence in managing constipation among patients’ families and health professionals.
Citation: Rayner J, Richardson D (2022) Constipation in children and young people: developing a care pathway. Nursing Times [online]; 118, 10.
Authors: Juliette Rayner is chief executive, ERIC, the Children’s Bowel and Bladder Charity; Davina Richardson is children’s specialist nurse, Bladder and Bowel UK.
Childhood continence problems are common: NHS England (2018) highlighted that around 900,000 children and young people (CYP) experience bladder and bowel dysfunction, and that bowel and bladder problems have a greater impact than almost any other medical condition on children’s self-esteem, education and social relationships.
Faecal incontinence affects 1-4% of children in the UK (Heron et al, 2018). Constipation is a problem in children worldwide, affecting up to one in three children, including babies (Koppen et al, 2018), and this may be higher in children with learning disabilities and/or autism: Maslen et al’s (2022) systematic review of 31 studies published between 1990 and 2016 found a prevalence of >33% in 21 studies and >50% in 14 studies. The scale of the problem is huge, and the associated embarrassment and shame has a negative impact on young lives. Many suffer in silence and, for some, the anxiety brings them close to breaking point.
Children’s continence care has long been neglected, and a postcode lottery dictates whether CYP and their families receive excellent care or none at all (Paediatric Continence Forum (PCF), 2022). In June 2022 the PCF published the results of a freedom-of-information request sent to NHS organisations in all nations of the UK. This highlighted continued disparities in children’s continence service provision: in 2021, almost half of NHS organisations (49%) failed to provide “services for all areas of bladder and bowel difficulty”, and just 38% had an integrated children’s continence service (PCF, 2022). In addition to suggesting increasing disparity of provision geographically, these worrying findings indicate variable levels of resourcing across services.
The first wave of the Covid-19 pandemic also had a detrimental impact on children’s continence services: as health professionals were redeployed, many services had reduced availability or closed completely. The concern now is to ensure a return to pre-pandemic levels and improve on them (PCF, 2022).
The Excellence in Continence Care Programme Board reviewed and relaunched guidance for commissioners and leaders in health and social care, which was published by NHS England (NHSE) in 2018. However, the board felt further work was needed to support the document with tools, resources and data. The aim was to demonstrate tangible evidence of service improvement across the whole health and care system. Consequently, in late autumn 2019, the National Bladder and Bowel Health Project was launched, with the aim of coproducing a continence care system with NHSE to ensure excellence in standards of care and service provision.
The project work is split into the following workstreams: adult bladder care; adult bowel care; adult stoma care; paediatric care and transition to adult services.
After NHSE and NHS Improvement (NHSI) (2019) highlighted 12 deaths caused by constipation in adults with learning disabilities, work was taken forward to tackle this national priority. NHSE and NHSI in the south-west of England were tasked with addressing constipation in people with learning disabilities; which was, alarmingly, too often leading to people dying from associated complications (NHS England and NHS Improvement, 2019).
It was agreed that the brief would be widened to promote good bowel and bladder health. This led to an additional drive to enable better education, identification and treatment of constipation in children with learning difficulties from an early age, aiming to improve self-management into adulthood. Alongside this, the NHS Children and Young People Transformation Programme, in discussion with ERIC, a bladder and bowel charity for children, highlighted constipation as an immediate priority, due to its prevalence, positive results from health promotion and early intervention, and the devastation to children and families when it is unrecognised or is misdiagnosed.
Whole-system change is necessary. Integrated care systems (ICSs) are at the heart of taking the lead and investing in sustained change, while recognising overlapping roles and responsibilities of parents/carers and professionals across:
The Health and Care Act 2022 states that the integrated care strategy should set the direction of the system across the integrated care board and integrated care partnership area. NHS commissioners and local authorities, working with providers and partners, can deliver integrated, preventative, person-centred care for their population across their life course. The strategy presents an opportunity to do things differently, reaching beyond traditional health and social care boundaries to consider wider determinants of health and joining up approaches.
This legislation adds weight to the case for integrated, community-based, nurse-led paediatric continence provision. It paves the way for multiagency health promotion, early detection and effective intervention for all childhood continence problems, and means bladder and bowel health promotion from birth is a responsibility of all professionals working with children and families. Lastly, Family Hubs and Start for Life (National Centre for Family Hubs, nd; Department for Education and Department of Health and Social Care, 2022), are both high-profile, early-years programmes for which integration is critical and the legislation will provide a framework to support them to achieve successful outcomes.
NHS England’s Excellence in Continence Care Programme Board and the National Bladder and Bowel Health Project jointly identified constipation as a priority and the paediatric and transition to adult services workstream made this their immediate focus. The national constipation project targeted its approach at supporting ICSs by providing a practical pathway, resources, information and education for families and professionals. This bottom-up approach enabled strategic priorities to be transformed into implementation plans with effective action for CYP – including babies – and their caregivers.
The project workstream was divided into three subgroups:
Workstream members included recruits from NHS trusts, public health and the third sector, and the project received support from NHSI and the NHS South West Children & Young People Transformation Programme, including its learning disability and autism programme. There was a collaborative approach to achieving the project objectives – which are outlined in Box 1 – leading to the cocreation of a new national pathway, incorporating health promotion and prevention. Resources have been reviewed and gaps identified and filled. It is planned that the new pathway will be launched by the end of the year.
Box 1. The national constipation project’s objectives
The symptoms of constipation are easily missed, particularly in younger children. However, the condition needs proactive treatment as it is unlikely to respond spontaneously. Early, effective treatment can alleviate potential negative impacts on self-esteem and social behaviour, and may also prevent difficulties continuing into adolescence and adulthood, thereby improving quality of life for young people and their families (PCF, 2022).
Early-years development and school readiness are key priorities of the ICSs. ERIC and Bladder and Bowel UK (BBUK) helpline staff increasingly hear about children starting school in nappies or having incidents of incontinence at school. We believe family hubs and the Start for Life programme must be the go-to places for health promotion, to increase awareness of bowel health and when medical intervention may be needed.
Health visitors and school nurses face resource challenges (Launder, 2021; Institute of Health Visiting, 2020), so it was important to avoid extra work for those groups and, instead, engage with a wider range of professionals across local authorities and early-years services. The principles of Health Education England’s Making Every Contact Count approach (Health Education England, 2019) created a framework for this, making use of the many day-to-day interactions that organisations and individuals have with other people to support CYP with constipation to make positive changes to their physical and mental health and wellbeing. To facilitate this, the workstream’s subgroup designed interventions that integrated into the five mandated early-years reviews:
For example, at the antenatal health-promotion review, the health professional could discuss bowel motions in the newborn and how to choose nappies that suit the family’s lifestyle and values. At the six-month contact, they could discuss the importance of hydration during weaning and signpost to resources on the ERIC and BBUK websites. At the 2.5-year review, support could be provided for potty training if it has not already been started.
The following quote, from the parent of a child with continence problems, reflects the type of comment BBUK and ERIC healthcare staff hear daily on their helplines: “I have found the lack of understanding from GPs one of the hardest things to manage, and I believe if we had been given proper help and advice when I first asked for it – when my son was only seven months old – we would not be in this situation now he is four-and-a-half. I could write an essay on the misinformation I have been given by GPs” (West of England Academic Health Science Network, 2022).
This workstream’s subgroup wanted to support GPs to sustain good practice in caring for CYP with constipation. GPs who engaged with the subgroup expressed a desire to access information, support, and resources to help them provide the best response and service for CYP and their families. Together with GPs, the subgroup designed a new national children’s constipation care pathway, based on NICE (2017) guidelines and incorporating good practice from BBUK’s and ERIC’s resources. As the work progressed, the subgroup became increasingly sure of its importance to ensure that all CYP who present with constipation have a GP who can guide them through the care pathway.
Lack of health promotion can result in families being unable to identify constipation or unaware of the action to take. Equally, GPs may not diagnose constipation or treat it effectively. This all increases the likelihood of families presenting in the emergency department. Compared with early identification and intervention in the community, this can be more intrusive for patients and expensive for the NHS, and it is often inappropriate (BBUK, 2017).
The workstream’s subgroup produced a set of management principles for hospital staff, explaining their immediate responsibility and the process of referral back to the GP.
The new pathway does not suggest a change in treatment protocols for constipation in CYP. However, it promotes better understanding of the long-term impacts of constipation on the health and wellbeing of these patients, including the added effects for those with learning disabilities. It also highlights the implications for nurses and other health professionals in identifying constipation, intervening early, and ensuring families are referred appropriately (Box 2).
Box 2. The new pathway’s implications for nurses
CYP = children and young people
As the care pathway is soon to be launched, the changes ahead will bring challenges. However, as health professionals who are passionate about supporting babies, CYP and their families, we should seize the opportunity the ICSs present for improvement in this significant but difficult area of children’s health – particularly in the development stage. We hope the key messages of the new pathway and accompanying resources will support change and reduce the impact of constipation and other continence problems on the health and wellbeing of CYP and their families.
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