Intellectual Disability Nursing

An Oral History Project

Bob Gates, Colin Griffiths, Helen L. Atherton, Su McAnelly, Paul Keenan, Sandra Fleming, Carmel Doyle, Michelle Cleary, Paul Sutton

• Publisher: Emerald Publishing Limited
• Year: 2020
• ISBN:
  9781839821547
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

This unique monograph, based on empirical research, used the oral history approach to explore the careers of 31 intellectual disability nurses from England and the Republic of Ireland; each with at least 30 years' experience.
We sought to understand motives for such long service to nursing practice. Some had worked in the intellectual disability hospitals of the 19th and 20th Centuries. In both jurisdictions these have almost closed and been replaced with smaller living configurations; subsequently few such nurses have experience of these institutions. This makes it important to hear their stories, which were digitally recorded; now forming a unique collection in the Royal College of Nursing's archives. These oral histories when synthesised with prevailing discourse of intellectual disability nursing from literature, and research put into perspective contemporary nursing workforce challenges faced by these nurses in both jurisdictions. Their stories are testament, amongst other things, to a strong 'sense of justice… doing the right thing and making a difference'. Some reported a 'very early interest in working with people with intellectual disabilities'. And at 'journey's end' sadly, almost universally, they reported a sense of being 'undervalued'. Their narratives articulate enormous health and social care change witnessed over three decades or more. But above all else they give voice to commitment, dedication, and kindness to a vulnerable, and often marginalised people, those with intellectual disabilities, as such it gives voice to otherwise 'Untold Stories'.

1

INTELLECTUAL DISABILITY NURSING: ORIGINS AND CONTEMPORARY CHALLENGES

INTRODUCTION

This research monograph concerns itself with the telling of stories. Those stories are of a specialist section of the health care workforce in England and the Republic of Ireland; intellectual disability nurses.¹ The origins of this workforce can be traced back to a moment in time in the twentieth century, when people with intellectual disabilities were often segregated from their communities in large institutions. Such institutional provision necessitated a specialist workforce that was well educated and trained; intellectual disability nursing was to ultimately emerge to fulfil this role.

Through a series of serendipitous developments during the first half of the twentieth century, intellectual disability nursing became part of the wider nursing family. And as institutions eventually became hospitals, this professional group was considered essential for the effective delivery of medically dominated, psychiatry led regimes of care. However, many decades later, the converse has become the case; instead of being central to the delivery of care, the relevance and the specialist contribution of intellectual disability nurses has become the subject of increasing scrutiny, with some considering it now redundant in light of changes to the nature of service provision for people with intellectual disabilities. To date discussion about the future of this professional group has endured unabated; as such their survival as a specialist part of a wider health and social care workforce remains uncertain.

Origins and Contemporary Challenges

Currently within the United Kingdom of Great Britain and Northern Ireland, and Republic of Ireland, pre-registration undergraduate nursing students choose to follow one of four fields of nursing practice: children, adults, people with intellectual disabilities or mental health. After three or four years of Higher Education and the successful completion of both theoretical and clinical components of a professionally validated programme of study, they are eligible to qualify and register in their chosen specialist field of practice. From an international perspective uniquely the United Kingdom and Republic of Ireland are the only countries to follow this approach (save Hong Kong which retains intellectual disabilities at pre-registration level²). Instead other countries provide generic pre-registration nurse education, although internationally nurses subsequently do sometimes elect to work with, and support people with intellectual disabilities at the point of post registration.

Intellectual disability nursing itself is a specialist part of the wider health care professions, and it has been supported and endorsed by many as unique in its breadth of employment base being located, as it is, among various sectors, and service providers (Manthorpe et al., Gates, 2011; McCarron et al., 2018), and valued for the contribution they make to the lives of people with intellectual disabilities. The contemporary practice of intellectual disability nursing in England has a wide portfolio that includes community support specialists, liaison posts, hospice care, diversion from custody schemes, epilepsy specialists, secure or forensic health settings, as well as offering a range of specialisms in more generic community nurse roles, and these roles offer support across the age continuum (Gates & Mafuba, 2014; Manthorpe, Alaszewski, Motherby, Gates, & Ayer, 2004; McCarron et al., 2018). However, it should be acknowledged that whereas research and policy supports a clear need for such a range of services, this diversity of services remains rare or non-existent in the Republic of Ireland (Keenan, 2007; McCarron et al., 2018).

But despite the specialist nature of intellectual disability nursing, and the known contribution they make to the lives of people with intellectual disabilities and their families (Brown et al., 2016; Doody, Slevin, & Taggart, 2017), the number of these nurses in England has witnessed a vertiginous decline over the last few decades (Gates, 2010; Gates, 2011; Glover & Emerson, 2012; Health Education England, 2018), making them something of an increasing rarity. In the United Kingdom, the numbers of registered intellectual disability nurses have continued to decrease from 18,546 in 2015 to 17,125 in 2019 – c 8% reduction (Nursing and Midwifery Council, United Kingdom, 2019). In the Republic of Ireland, the numbers of registered intellectual disability nurses have also decreased from 6,085 in 2016 (An Bord Altranais, 2018), and according to the Communications and Governance Officer to the NMBI to 5,181 in January 2020 – c 15% reduction (Personal Communication, Communications and Governance Officer to the Nursing and Midwifery Board of Ireland (NMBI), 30/05/2020). Prior to the date parameters used in this monograph, the Republic of Ireland had experienced a rapid growth in the numbers of registered intellectual disability nurses, which perhaps might partly be accounted for by the Irish Economic Boom (colloquially known as the Celtic Tiger) that facilitated an expansion of service provision as well as training more intellectual disability nurses to address acute staff shortages (Department of Health and Children, 1998; Humphries, Ruairi Brugha, & McGee, 2012). These shortages were evidenced by challenges in securing an adequate specialist intellectual disability nursing workforce through local and national recruitment alone. Instead of intellectual disability specialists, service providers had to resort to employing general and children’s nurses to deliver the care and support rather than intellectual disability nurses (McGonagle, O’Halloran, & O’Reilly, 2004); some of these came from countries such as India and the Philippines, and were nurses predominantly trained in the areas of general, mental health and children’s nursing (Humphries et al., 2012; McGonagle et al., 2004). Additionally, these shortages also led to the development of new posts for health care assistants, and an emerging workforce of Social Care workers to meet the social care needs of those residing in residential care (Health Service Executive, 2011; Keenan, 2017). Whereas intellectual disability nurses in the Republic of Ireland have developed their inter-professional practice through working with such groups, and by leading and co-ordinating effective care for the benefit of people with intellectual disabilities (McCarron et al., 2018), their ultimate future, as a consequence of these social care workers, remains to be seen. In the United Kingdom more widely, and particularly so in England, the numbers of registered intellectual disability nursing have been falling, and for some time; possibly a decade or more.

One of the difficulties in predicting a future of intellectual disability nursing in the Republic of Ireland could, in part, be due to temporal variance in models of service provision for people with intellectual disabilities. In England, and more generally in the United Kingdom, many people with intellectual disabilities now live in either their own homes, or small community settings. This follows a long period, comprising many decades, in which large scale, often segregated institutional health based provision, dependent on a nursing workforce, was gradually phased out in favour of small scale community based provision based on the principles of ordinary living, and supported by a social care sector workforce (Walmsley, 2007; Welshman, 2007). In contrast, the move from congregated to community living in the Republic of Ireland has only more recently begun to take place with contemporary estimates showing that a higher number of residential services still exist there as compared to England, and the United Kingdom more widely, and fewer numbers of people with intellectual disabilities living independently (McConkey & Craig, 2017; Sheerin, Griffiths, Keenan, & De Vries, 2015). Perhaps because of the relatively slower pace of change, the effects of changes to service provision on the numbers of intellectual disability nurses in the Republic of Ireland could remain unknown for some time. However, it may not be unreasonable to assume that structural changes to service provision will undoubtedly lead to future questions as to the viability of this specialist field of nursing practice, as has been the case in England, and more widely in the United Kingdom. However, as will be shown later in this monograph, the reasons attributed to the vulnerability of intellectual disability nursing are far more complex than just the changing nature of services.

Such vulnerability of a specialist part of the wider nursing workforce being perceived as redundant is not without precedence. Currie (2005) has provided a parallel historical account concerning the rise, and then subsequent fall of Registered Fever Nurses (United Kingdom), or Registered Infectious Disease Nurses (Ireland). This now vanished specialist part of the nursing workforce was in the past needed to run the fever hospitals of the nineteenth and twentieth centuries established to care for patients with a range of communicable diseases of a bygone age. However, as a consequence of medical advances and treatment regimens, such hospitals were no longer thought necessary, and all were to eventually close in the twentieth century. Consequently, the fever registers closed, and this specialist field of nursing practice was relegated to the annals of history. The point being made here is that this specialist workforce was inextricably linked to the physicality of the buildings as legitimising their role along with the continuing necessity of such a specialist workforce. This said in the context of service reconfigurations for people with intellectual disabilities these are but one small part of a much larger and complex range of factors that have contributed to the vulnerability of intellectual disability nursing as a necessary workforce, that have given rise to on-going questions about its sustainability as a specialist field of nursing practice. These factors emanate from both within and outside of the nursing profession, and can be portrayed at the level of the individual, the profession, government and society in general, and as will be shown in the subsequent chapter it is the complexity of this interplay between these different levels, as located along a temporal continuum, that may account for the situation that intellectual disability nursing now finds itself in, particularly so in England. Yet despite this uncertainty as a profession, it still continues to attract to, and retain a dedicated, albeit, increasingly smaller workforce (UK Chief Nursing Officers, 2012).

Notwithstanding in both jurisdictions, intellectual disability nursing numerically remains one of the smallest of the four fields of nursing practice, and its gradual decline as a workforce, particularly in England, has resulted in them facing uncertainty as a viable future specialist health workforce; this in turn will have significant implications for the implementation of national policies affecting the lives of those with intellectual disabilities (Health Education England, 2018; Merrifield, 2018; National Health Service, 2018).

Little research exists as to why individuals are attracted to a field of nursing practice whose existence is, at best, precarious. Indeed, an initial scoping review of published literature undertaken in preparation for this current study found scant evidence on the subject. Whereas personal stories of people with intellectual disabilities appear to have received considerable attention from the academic community there are, by way of contrast, few authentic historical accounts of the lived experience of intellectual disability nurses. And of those that have been published (Gates & Moore, 2002; Mitchell & Chapman, 2008; Mitchell & Rafferty, 2005), factors affecting their motivation to remain in the profession have not been explicitly explored. In studies where individual motivations for entering and remaining in the profession have been considered (Genders & Brown, 2014; Owen & Standen, 2007), there appears no comprehensive account of them. Moreover, the possibility of international differences has not, as of yet, been acknowledged or studied. In the Republic of Ireland, specifically there exists limited empirical, or in-depth contextual analysis of the history of intellectual disability nursing (Sweeney, 2003, 2011); this makes a study such as this both timely and perhaps long overdue.

Thus, this monograph reports on a unique study that has sought to contribute to an area of nursing research, where there is limited knowledge and understanding and to address this through employing the oral history method to capture the personal accounts of intellectual disability nurses with over 30 years’ experience in this field of practice. It analyses these stories to try and understand the individual motivations of these staff for, not only, entering the profession, but also choosing to spend so much of their working life, in some cases all of their working life employed in the care of people with intellectual disabilities. It also seeks to learn lessons that might resonate with the current crises in nursing recruitment, and retention in nursing specialities, particularly intellectual disability nursing, specifically in Republic of Ireland and England. The project has sought to accomplish the preservation of these stories in a unique collection now held in the Royal College of Nursing’s history archive in Scotland, United Kingdom in order for nursing, social science or history scholars of the future to have access to data that ordinarily would have been at risk of being lost forever. Because of the almost complete closure of intellectual disability hospitals in both jurisdictions, and the accompanying move away from congregated living, few, if any, of the remaining practising intellectual disabilities nurses will have had experience or knowledge that is located in the old ‘long stay’ institutions. It was therefore also timely to undertake this project to give voice to some of the ‘untold stories’ of intellectual disabilities nurses from these traditional services, along with others who all have worked for many years in other areas of intellectual disability care.

We commence this study from an evidenced, albeit limited, based premise that intellectual disability nurses are considered an essential contributor to the lives of people with intellectual disabilities and the wider health and social care workforce, particularly so the nursing workforce. It might be argued that in an ‘ideal world’, there would be no need for a specialist intellectual disability workforce as people with intellectual disabilities would have their healthcare needs met by the same services as their non-disabled peers. And whereas closure of the old long stay institutions, along with a shift toward integrated, rather than segregated services has resulted in the majority of people with intellectual disabilities in England, and increasingly so in Republic of Ireland, having their healthcare needs met by ordinary services, questions continue to be raised as to the extent to which such services have the necessary knowledge and skills to provide safe and effective healthcare to this group (Mesa & Tsakanikos, 2014; Oulton et al., 2018).

Poor quality health care provision for this group has been evidenced in a steady stream of investigations and single case reviews that identify widespread failings on the part of ordinary services to meet the health needs of people with intellectual disabilities, and this, perhaps, suggests the importance of a continuing need for a qualified specialist nursing workforce (Heslop et al., 2013; Mencap, 2007, 2012). It would seem that the manner in which ‘ordinary’ health services provide care and support have led some to conclude that the day when intellectual disability nurses are no longer required remains a ‘distant dream’ (McMillan, 2008), and that this view is also to be found in international literature. For example, a scoping review exploring practice, policy and legislative issues concerning people with intellectual disabilities in Australia has pointed out that regardless of the deinstitutionalisation policies of the 1970s, that at the time conceived intellectual disability nurses as part of a ‘medicalised’ workforce, specialist intellectual disability nurses continue to be employed, and are needed to support the specific health and support needs of people with intellectual disabilities (O’Reilly et al., 2018). In another paper, Auberry (2018) has commented on current challenges facing intellectual and developmental³ disability nursing in America asserting the importance of this profession in assisting people with intellectual and developmental disability who encounter fragmented systems of care that they find hard to navigate. Yet in doing so she also acknowledges the challenges faced by this professional group that includes limited professional education, role ambiguity and with this the challenge of trying to accommodate conflicting models of care. Difficulties with case load and acuity, an inadequate evidence base for practice and reports of lower salaries than other fields of nursing practice are reported as additional issues. She concluded that:

Intellectual and disability nurses are best positioned to identify health care needs of this population and trial interventions aimed at improving health care. (Auberry, 2018, p. 27)

Davis, Phillips, and Nankervis (2002), in a report prepared for a Scottish National review of the contribution of nurses to the care and support of people with intellectual disabilities noted that:

In Australia those with the equivalent of intellectual disability nursing degree qualifications have been shown to be critical to the disability and generic service system, the reduction of their numbers and concurrent ‘deprofessionalisation’ of workers in the disability sector has resulted in a significant loss of opportunities for people with an intellectual disability. (Davis, Phillips, & Nankervis, 2002, p. 88)

Thus, a failure to invest in a viable future for this specialist part of the wider health care workforce may well result in unforeseen, but perhaps predictable, consequences for the lives of people with intellectual disabilities and their families. Indeed it has been noted that intellectual disabil...

Table of contents

• Cover
• Title
• 1. Intellectual Disability Nursing: Origins and Contemporary Challenges
• 2. Background Literature and Research
• 3. Method and Methodological Issues
• 4. Findings
• 5. Discussion
• 6. Conclusions, Limitations and Observations
• Appendix 3.1. Gantt Chart of the ‘Untold Stories’ Project
• References
• Index