Commissioning continence services for children and young people.
VOL: 101, ISSUE: 12, PAGE NO: 54
Sue Thomas, BA, RGN, RM, DN, CPT, is health visiting nursing policy and practice adviser, Royal College of Nursing, LondonThe figures in Box 1 indicate the extent of the problem of urinary and faecal incontinence in children and young people. They suggest that work needs to be done to ensure these continence services are modernised and integrated. Government policy documents relating to children and young people, the most recent of which is the National Service Framework for Children, Young People and Maternity Services launched in the autumn of last year (DoH, 2004a), can be used to assist in this development.
Normal child development involves the acquisition of both urinary and faecal continence, although children become continent at different ages. Factors that influence this include cognitive ability, family and socio-cultural factors. Although delays in toilet training are not necessarily associated with cognitive difficulties it is likely that children with a global development delay may take longer than expected to achieve bladder and bowel control. Two other groups of children may experience continence difficulties: - Children with physical problems that can compromise continence - for example, spina bifida; - Children and young people who have developed problems such as enuresis or encopresis as a behavioural response to emotional difficulties. Children with physical disability who have continence problems should have these identified before the child starts school. This means that pre-school establishments and schools should be able to support children and young people with continence problems and they should not be excluded from education. Constipation may also be a problem for children and young people of any age. Reasons for lack of continence services development
The problems that affect the development of continence services for children and young people are the same as those identified for continence services as a whole: - A lack of policy focus for continence promotion; - Poor identification of children and young people with continence problems; - Lack of involvement of service-users and their parents at all levels of service planning and delivery; - Geographical variations in: eligibility for services; the range of treatments provided and the time spent waiting for them; and the number of staff trained in continence assessment and management. The Good Practice in Continence Services targets for children and young people
Good Practice in Continence Services (DoH, 2000) outlined just one joint target for health and local authorities' services for children: arrangements should be put in place to ensure children are not excluded from normal pre-school and school educational activities because they are incontinent. In 2001-2003 I undertook a survey of PCTs and continence services in England to examine how continence services were meeting the targets laid down in Good Practice in Continence Services (DoH, 2004). Baseline data were collected from services in 2001-2002 and again in 2002-2003. The data were then compared. The survey found that although many PCTs felt they had excellent continence services for children, on closer questioning it was obvious that these services had been developed in isolation, and that there was little evidence of a child-centred approach or of integration. There was no, or poor, access to children's continence nurses, and care did not follow national guidelines. There was also no benchmarking against best practice and lack of knowledge about the support children and young people might need. This lack of awareness was also identified by work undertaken by the Children's Continence Action Group (2003). As part of the RCN and Continence Foundation (2004) survey, PCTs were asked the target question: 'Are children and young people being excluded from school because of problems maintaining continence?' In year one of the survey, 32 per cent of respondents felt that children were being excluded and only eight per cent stated they were not; 60 per cent were not able to answer the question. In the second year of the survey the situation was similar: 33 per cent felt that children were being excluded and 10 per cent felt sure they were not; 55 per cent stated they did not have sufficient knowledge to answer (two per cent did not answer the question at all). Achieving effective interventions
Using the policy target in Good Practice in Continence Services (DoH, 2000) as a criterion, effective interventions for children and young people should include: - Early assessment by a suitably trained health professional in consultation with parents and other carers, including school staff; - Assessments that specify the child's problem; - A clear treatment and management strategy. Any extra resources or adaptations required should be outlined and a named person identified for the implementation of treatment and coordination with other agencies; - Six-monthly reviews of the patient; - Unrestricted access to suitable toilet facilities; for example, if school toilet facilities are locked, the child who has the continence problem should have a key rather than having to ask for access; - Accessible and fresh water-drinking facilities. Responsibility for children's services
One of the main problems identified in the RCN/Continence Foundation (2004) survey was confusion about who was responsible for the assessment, management and support of children and young people. Clearly, there is potential for a range of people from various organisations throughout the country to be involved in improving and coordinating the management of children's continence services. What is clear is that each integrated continence service should have a designated children's continence nurse. The director of continence services or continence service clinical lead should ensure that this nurse is in place. However, directors or clinical leads have not yet been appointed in all areas. National Service Framework for Children and Young People - A mechanism for ensuring a focus on continence services for children could now be this NSF (DoH, 2004a) because it aims to stimulate long-term and sustained improvements in the care of this client group. The NSF is a 10-year programme that will enable services to be designed and delivered around children, their families and their needs rather than around organisational or professional preferences. Health professionals working in primary care will have a key role in ensuring children with continence problems are identified and treated, or managed, in an appropriate child-centred way. Of the 11 standards, 10 are applicable to continence management (Box 2). They require primary care services to: - Improve access to services and information, and involve children and young people in planning continence care and services within each health economy; - Introduce a child health continence promotion programme that is designed to promote the health and well-being of children; - Promote healthy lifestyles while addressing health inequalities and ensure mechanisms are in place to address particular needs in the community; - Focus on early intervention based on a comprehensive assessment of the child and the family, which could include questions on bladder and bowel function; - Promote and safeguard the welfare of children by ensuring that all staff receive appropriate training and are aware of the actions they have to take if they have concerns about a child. All practitioners who come into contact with children and young people should be able to demonstrate they have the core skills, knowledge and competence in issues relating to effective interventions for continence management. These will include: - Having an understanding of child development; - Listening and responding to children, young people and their families; - Respecting children, young people and their families and ensuring that their opinions are heard; - Providing information about services and treatment to enable full participation in decision-making; - Safeguarding and promoting the welfare of children and young people; - Sharing information and multi-agency working. The chief nursing officer's (CNO's) review of nurses', midwives' and health visitors' roles in relation to vulnerable children and young adults (DoH, 2004b) called for: - A focus on integrated teams to meet the needs of children and young people; - Specifically focused children's and young people's workforces; - An expansion of the school nursing workforce, and emphasis on integrated working with others who work with children and young people such as health visitors and community children's nurses; - An ability to recognise vulnerable children and health professionals' responsibilities in taking action to safeguard these children's needs. These directives could be used to support a campaign for child-centred continence services. How the standards of the children's NSF are implemented and achieved is being left to local discretion, so it is vital that continence advisers campaign locally for improvement and use the standards and the CNO's recommendations to influence practice development (Box 3). Steps towards encouraging integration of children's continence services
Although continence was not listed as a specific target in the children's NSF, all aspects of child care are now receiving much wider attention following repeated public service failings to address needs (Kennedy Report, 2001; Laming Report, 2003). A stepwise approach would ensure integration of services, starting with identifying key stakeholders in local services. With this group of stakeholders, staff in the continence services should consider best practice and the means by which information can be disseminated. Ways in which this could be achieved include: - Setting up networks to share education, improve co-ordination and address development priorities; - Mapping existing continence services for children; - Benchmarking services (Children's Continence Action Group, 2003); - Identifying professional executive committee and board members, and considering how staff can work effectively with them and other key stakeholders to improve continence service delivery for children and young people; - Identifying and becoming involved with local clinical networks and commissioning team members; - Working with the public health team to collate data relevant to children's continence services, including problems such as the number of children attending hospital for the management of constipation; - Being prepared to challenge local decision-making. Conclusion
Although there has been progress in developing integrated continence services since the launch of Good Practice in Continence Services (DoH, 2000), there is still a long way to go, particularly in relation to children and young people. The markers of success in achieving truly child-centred continence services will be that of a proactive workforce and accessible services driven forward by an integrated continence service. Related article in nursing times Thomas, S. (2004) Commissioning continence services - turning policy into action. Nursing Times; 100: 20, 52-58. Useful websites
ERIC (Education and Resources for Improving Childhood Continence) provides an interactive website (www.eric.org.uk) and a website for teenagers (www.trusteric.org) A telephone helpline is available Monday-Friday, 10am-4pm on 0117 960 3060.