Chapter Nineteen. Community learning disability nursing
Ruth Wyn Williams and David Coyle
KEY ISSUES
• The values and principles underpinning community learning disability nursing
• Role of the community learning disability nurse
• Evidence-based practice
• Influences and opportunities for community learning disability nursing
Introduction
The aim of this chapter is to provide the reader with an overview of the role and context of community learning disability nurses (CLDNs), identifying key issues in contemporary learning disabilities nursing practice. The value base and principles underpinning CLDNs are reviewed in light of current legislation and policy. The role of the community nurse is discussed considering professional guidelines and the interdisciplinary challenges arising from policies originating from the United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC; 1998) and the Nursing and Midwifery Council (NMC; 2007), as well as the Scottish Executive (SE; 2000), Department of Health (DH; 2001) and the Welsh Assembly Government (WAG; 2007). The chapter concludes with examining the potential and the challenges for the role in an ever-changing environment and the continual push for the nurse to work in partnership with service users and their families to attain good health and good lives. The pace and rate of development within CLDN practice since the publication of the previous edition necessitates a full discourse on the role and context for practice today and in the future.
The values and principles that underpin community learning disability nursing
Much is often made of the role that values have in learning disability practice (DH 2007). It appears that only CLDNs rely on an articulated theory that places the person at the centre of nursing interventions. Were this the case, CLDNs would indeed be exceptional. All nursing branches have at their core a set of beliefs that inform and influence their interactions with the client or patient. Nurses and public health workers are not so different, though in the case of learning disabilities; the history and social legacy of the client group may well be. Additionally, the work of CLDNs does not support a homogeneous population. The 210 000 people with severe learning disabilities and 1.2 million people with moderate or mild learning disabilities (DH 2001) they support are heterogeneous with resulting complexity for organizing services.
It is not the intention of this section to retrace historical lineage of learning disability nursing. Students may find such accounts in other works (Gates 2006), and in the substantial output of Mitchell (2000). It is of significance though to reflect that CLDNs have, over the past three decades, shaped and focused their practice responding to changing cultural, social and moral drivers. CLDNs have responded with flair and innovation to meet the progressively changing needs of people with learning disability and continue to do so. They have achieved this without losing their health promotion role for the client group. While we must see how history informs today’s practice, we must equally look to the future, free from the past’s constraints (Jukes and Bollard 2003).
The principle upon which modern learning disability services are founded is a social model of impairment (Swain et al 2003) and also upon the principles of person-centred planning (Sanderson et al 1997, Sanderson 2003). This approach can be seen to be at the heart of current legislative and social policy in all the home nations: Valuing People (DH 2001), The Same as You? (SE 2000), Statement on Policy and Practice for Adults with a Learning Disability (WAG 2007), Equal Lives (Department of Health, Social Services and Public Safety (DHSSPS) 2005). The challenge for services today is in tackling exclusion and stigma and improving quality of life and participation for people with disabilities.
The increased legislative basis of rights in society from the Human Rights Act (1998), Disability Discrimination Act (1995), individual service plans (Duffy 2005) and the Mental Capacity Act (2005) has shifted the balance of power from professionals to the individuals, user groups and organizations that represent their needs, wishes and rights.
A social model of impairment
It is known that health inequalities and high morbidity of preventable disease are prevalent in people with learning disabilities (Cooper et al 2004). An understanding of the social model helps the CLDN recognize needs and aspirations of a population excluded from mainstream health, culture and politics as it acknowledges the connections between social activity and health across the domains of health promotion and maintenance.
The principles of ordinary life as embodied in influential papers such as the seminal five service accomplishments (O’Brien 1987) laid the foundation of today’s services. Person-centred approaches now form the foundation principle of support. Indeed, John O’Brien (2004) stated that in order to achieve the keystone objectives of Valuing People (DH 2001), person-centred planning as proposed by Sanderson et al (1997) has to exist. The one could not function without the other.
The social model of impairment does not deny the problem of disability but locates it within wider society. An individual’s limitation in any aspect of daily living or health maintenance is not the central problem. This is to say that the social model does not undermine nursing and health roles. On the contrary, it brings into sharp focus the action required to address inequalities in health and develop strategies to identify and support the client with health promotion, health gain and towards inclusion and citizenship. It is most important that this approach should not be confused with a social model of provision (Swain et al 2003) where health need may be overlooked with detrimental consequences for the person with learning disabilities (Northway et al 2006).
For the CLDN the social model provides a focus for partnership and intervention. Rather than trying to fix the person, the emphasis is on supporting access and inclusion to healthier lifestyles and developing opportunities for the individual to be a part of healthier communities. Rather than trying to make the person adapt, for example learn to read sufficiently well to access and understand health promotion literature, literature instead is adapted to be accessible to the person, resulting in the possibility of health gain. By responding in this way, a more active personalized approach to health gain might be achieved and dependence and passivity within the individual avoided.
Social policy such as Our Health, Our Care, Our Say (DH 2006) and direction from within learning disability nursing itself, such as Shaping the Future (Northway et al 2006) demand that practitioners avoid an individual model and instead work in partnership toward a more social model approach while retaining and supporting the client’s journey towards health (Aldridge 2004). Succinctly put, the Department of Health summarizes the role of the learning disability nurse within healthcare:
… the main objective for the NHS is to ‘enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a high standard, and with additional support where necessary’. (DH 2001: 23)
Rights
The aim of nursing is the promotion and attainment of healthy lifestyles in which the people themselves have greater choice over their lives and are integrated into their local communities (O’Brien 1987, Duffy 2005). The Disability Discrimination Act 1995, although taking 10 years for full implementation, is making an impact on the access to health and communities for people with learning disabilities. In combination with the Mental Capacity Act 2005 and the existing Human Rights Act 1998, people with learning disabilities have never had their rights acknowledged and protected to their current extent.
Initiatives within the UK such as In Control (Duffy 2005) provide people who have learning disabilities with real power through financial decision-making and choice to buy individually designed services that cannot be delivered through traditional health and social care providers. The person’s aspirations as the focus of service response are the basis of a rights culture that the modern learning disability nurse works within. In identifying health need and developing effective individualized packages of care, the CLDN can forge and facilitate working partnerships that empower the service user or client to experience a healthier life.
The Disability Rights Commission (DRC; 2006) (now the Equality and Human Rights Commission) has highlighted the inequality for people with learning disabilities in getting access to physical health services. They point to a number of failings on the part of primary care trusts (PCTs) in adequately providing for this client group. They are concerned that PCTs are not being advised on the unique needs that this group has. They recommend that each PCT has a strategic health facilitator role to champion the needs of people with a learning disability and to provide expert clinical advice to ensure equal access to the primary care services.
This is a clear example of how a rights-based culture now informs and directs services afforded to people with a learning disability. Rather than lamenting the high rates of clinical morbidity and low rates of uptake in preventative screening, the rights-based approach states that it is unacceptable for the current inequity to continue and demands action to redress the imbalance. The following section outlines the contexts in which CLDNs practise, the challenges they face and some approaches that may assist in supporting people with a learning disability.
The role of the community learning disability nurse
Current policy and practice are moving away from a paternalistic model to featuring choice as a central theme (Leadbeater et al 2008). The essential foundation of practice for the CLDN and others involved in supporting people with learning disability is person centredness (DH 2007). Fagan and Plant (2003) state that empowering people with a learning disability to identify and meet their health and social needs is the greatest challenge learning disability practitioners have. To be able to work in partnership identifying what is important to and for the person with the challenges and potential for conflict inherent is equally challenging.
In the last 8 years (2000–2008), learning disability services and practitioners in health and social care have seen profound changes. Some of these drivers have been people with disabilities themselves demanding better treatment, human rights awareness and a greater understanding of disability rights. However, in spite of the great progress in promoting the rights of people with learning disabilities, the uncovering of poor, abusive or negligent practice still arises and is a grave cause for concern (Commission for Healthcare Audit and Inspection 2007). We might on the other hand suggest that because of a greater expectation of rights for vulnerable people, the systems to protect individuals and expose unacceptable care are more robust and effective in safeguarding people with learning disability.
Learning disability health and social care policy can be identified as a concurrent policy, in that NHS and Social Services provide the same function throughout the UK. As such, CLDNs are expected to work to local (as well as individualized) levels, but also be cognizant of national policies, a task made harder by some service innovations such as ‘In Control’ (Duffy 2005) being scaled up by government without proper testing and evaluation (Leadbeater et al 2008).
• Consider how closely the practice of the team you work within adheres to the principles stated by the UKCC (1998) (Box 19.1).
• How person centred are the statements?
The intentions for policy are clear. The principles of rights, independence, choice and inclusion (DH 2001) are clearly stated within Valuing People. Five areas that are central to learning disability services in Northern Ireland are identified: citizenship, social inclusion, empowerment, working together and individual support (DHSSPS 2005). Wales has developed the Statement on Policy and Practice for Adults with a Learning Disability (WAG 2007: 12) stating:
All people with a learning disability are full citizens, equal in status and value to other citizens of the same age. They have the same rights to:
• live healthy, productive and independent lives with appropriate and responsive treatment and support to develop their maximum potential
• be individuals and decide everyday issues and life-defining matters for themselves joining in all decision-making which affects their lives, with appropriate and responsive advice and support where necessary
• live their lives within their community, maintaining the social and family ties and connections which are important to them
• have the support of the communities of which they are a part and access to general and specialist services that are responsive to their individual needs, circumstances and preferences.
These rights should determine the value base upon which all practitioners in learning disability should base their practice on in Wales. Joint working among these professionals is central in these policies as one aspect that could improve the service provided. The clear person-centred vision in these policies can only be achieved through integration of services and CLDNs have the potential to be at the heart of this.
In practice, CLDNs may work across a range of settings, including working in care management, though ‘good practice’ (DH 2007) warns that for CLDNs working in social care, to be most effective, the learning disability nurse should have a health focus.
To consider the tasks undertaken by CLDNs we may use Aldridge’s (2004) Ecology of Health Model, which was developed for supporting people with learning disabilities based on ordinary life principles. The model is a three-dimensional concept aiming to articulate the roles and contexts in which a person with learning disabilities can be supported to achieve a valued and healthy life. Matousova-Done and Gates (2006) cite Aldridge (2004) in stating the model is an:
… ever-changing state of individually defined optimal functioning and well-being, determined by the interplay between the individual’s internal physiology and psychology and their external environment. (Aldridge 2004: 172)
Using the Ecology of Health Model headings as a framework for discussion, the role of the community learning disability nurse will be explored:
• an assessment role
• a teaching and developmental role
• a therapeutic role
• a healthcare role
• a network and supportive role.
The appropriate identification and assessment of need
Assessment is an essential aspect of the CLDN role. It enables the practitioner to obtain information about a client’s health needs and wishes, prior to intervention. The client and carer are central in the assessment process, which often begins with an exploration of health need from a broad perspective. Assessment tools utilized by the CLDN will need to address areas such as health status and screening. This initial assessment often leads to more in-depth exploration of specific areas.
Promoting and maintaining health: a teaching and developmental role
When promoting the health of people with a learning disability several different approaches can be used. These are: medical, behavioural, educational, empowerment and social change. Barr (2006) reports that any of these approaches could be utilized by the CLDN, depending on the needs of the individual and the other people involved. Central to the Valuing People (DH 2001) initiative, and the appropriate strategies formulated in Wales and Scotland, the role of health promotion is paramount. The creation of health action plans (HAPs) (DH 2002) and health partnership boards where every person with a learning disability will have a HAP by 2005 was meant to ensure that individual susceptibility to illness and poor health among people with learning disabilities would be identified and addressed. The fact that people with learning disabilities are still proportionally more unhealthy with a higher mortality than the general population is an indication that much work has still to be done (Mencap 2007).
The CLDN has clear roles in identifying health need, coordinating and promoting health with and for people with a learning disability. In many ways the roles outlined for nurses supporting people with a learning disability by the UKCC (1998) are still relevant for today’s services.
Health facilitation, whoever does it and whatever way, in whatever setting is about ensuring healthier lives and better health for people with learning disabilities.
(Department of Health Guidance 2002, section 2, p. 12)
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