Nurses for People with Learning Disabilities within the United Kingdom: an Overview and Some Challenges for the Future

Owen Barr, RGN, RNMH, CNMH cert, RNT, BSc, MSc

Abstract

Nurses for people with learning disabilities work with adults and children who have varying degrees of learning disabilities and their families to promote and maintain their health. In the main they provide specialist services within an interdisciplinary approach in response to the specific difficulties that can arise due to the presence of learning disabilities. The core work of nurses for people with learning disabilities tends to focus on children and adults with complex health needs, especially those who present with challenging behaviour or mental health problems. They also have a role in health promotion and working with the increasing number of older people with learning disabilities. The role of nurses for people with learning disabilities is not dependent upon nurses working within a specialist hospital, but rather is “facility independent” (1). This article aims to: provide an overview of pre-registration nurse education courses for nurses wishing to work with people with learning disabilities and their families; outline the role of Registered Nurses for people with learning disabilities within the United Kingdom; and look at how this role is changing and the challenges it faces in the medium term.

Keywords: intellectual disabilities , developmental disabilities , education

CLARIFYING TERMINOLOGY

Throughout this issue of the journal, the role of nurses working with people who have development disabilities in a number of countries is discussed. I suspect on reading these articles it is evident that different definitions and terminology have been used to refer to this group of people.  Within the United Kingdom, the previous term of “mental handicap” was replaced in the early 1990s by the term “learning disabilities,” which is now the term used within nursing services.  Within the United Kingdom, the term learning disabilities is directly equivalent to the terms “mental retardation” or “intellectual disabilities” used in the United States of America.  The term learning disabilities in the United Kingdom does not include specific learning difficulties such as dyslexia, dyspraxia, or other similar learning difficulties (2).

INTRODUCTION

The United Kingdom and Ireland have differed from most other countries in that it has been possible since the 1960s to undertake programmes of nurse education at the pre- registration level that result in students gaining the qualification of Registered Nurse specific to working with people with learning disabilities.  This article aims to: provide an overview of pre-registration nurse education courses for nurses wishing to work with people with learning disabilities and their families; outline the role of Registered Nurses for people with learning disabilities within the United Kingdom; and look at how this role is changing and the challenges it faces in the short to medium term.

NURSE EDUCATION IN THE UNITED KINGDOM

All pre-registration nurse education is now university based, and leads to the award of a professional nursing qualification of Registered Nurse and an ac ademic award from the university.  However, the Registered Nurse qualification can be in one of four areas of specific practice, which are Learning Disability, Mental Health, Children, or Adult nursing.  It is important to note that all professional qualifications are at the same level of Registered Nurse and of the same professional standing. Nurse education courses are now, in the main, three-year, full-time courses, and students must meet nationally agreed upon learning outcomes and competencies for registration as required by the Nurses and Midwives Council (3).  Pre-registration nursing courses are structured with a one-year Common Foundation Programme, in which all students are taught together, and a two-year Branch Programme specific to each student’s area of nursing registration (Figure 1).

Figure One: An overview of the four-pathway structure of pre-registration nurse education in the UK.

During the Common Foundation Programme students undertake core modules in aspects such as nursing studies, including practical nursing skills, biology, psychology, sociology/social policy, communication, and introduction to research (3).  They also undertake periods of placement, working with active, healthy people and understanding healthy families, as well as placements in hospital and community settings, usually working with a wide range of people including those with physical and mental health problems, older people, children, those who receive maternity services, and people with learning disabilities.  The Common Foundation Programme aims to provide students with the foundation on which to build further learning and work in their specific area of practice (4).

Moving on to the Branch Programme, students undertake theoretical modules of study and associated placements specific to their chosen area of nurse registration. Within the learning disability programme, students are provided with opportunities to learn about the more specific areas of nursing knowledge and practice required.  All Branch Programmes have the same broad competencies that must be successfully achieved by all students in order for them to be awarded the qualification of Registered Nurse.  The purpose of the Branch Programme is to provide the necessary knowledge, value base, and practical skills training for students to achieve the required standard.  Whilst the same broad competencies have to be met by all nurses, the Branch Programme provides the necessary opportunities for each student to develop these skills in working within one’s specific area of nursing practice.  So, whilst all nurses have an agreed upon level of competency, the actual skills they have could differ considerably.  For instance, all nurses need to have skills in responding to emergency situations, which in Adult nursing may involve post- operative complications.  In a learning disability setting, nurses may be more likely to be involved in responding to a person who has tonic/clonic seizures.  However, considerable overlaps exists among the skills nurses develop and, where differences occur, they relate to the practical application of broader skills, rather than to the level of skills involved.

Another crucial component of the learning disability branch programme is the combination of the underpinning philosophies of nursing and of services for people with learning disabilities.  This brings together the philosophy of nursing as recently expressed by the Royal College of Nursing as “the use of clinical judgement in the provi sion of care to enable people to improve, maintain or recover health, to cope with health problems, and to achieve the best possible quality of life, whatever the disease or disability, until death” (5), with the need to do so in an environment that facilitates the inclusion of people with learning disabilities and their families as valued members of the community (2).  Promoting and providing equity of access to high-quality health services for people with learning disabilities is an integral part of learning disability nurse education.  The need to facilitate access for people with learning disabilities to mainstream services is central to the role of learning disability nurses (6).  Associated with this is nurses’ ability to use their knowledge and skills to enable people with learning disabilities to exercise their rights to health and nursing care as valued citizens; to facilitate informed decision making; and to assist people with learning disabilities to develop knowledge and skills so that they may live as independently as possible and lead fulfilling lives (2).

On successful completion of such a course, students can practice as Registered Nurses without additional examinations for countries within the United Kingdom.  Whilst the professional qualification awarded is always at the level of Registered Nurse, the academic qualification will depend on the course in which the student is enrolled, which is largely influenced by his or her previous academic qualifications.  Therefore, at present, the academic qualification can include an undergraduate Diploma of Higher Education, a Bachelor’s Degree or Bachelor’s Honours Degree, or a Graduate Diploma.

UNDERSTANDING THE ROLE OF NURSES FOR PEOPLE WITH LEARNING DISABILITIES

Whilst the core focus of the role of nurses for people w ith learning disabilities is the same as that for all nurses as reflected in the previously given Royal College of Nursing definition of the philosophy of nursing (5), the actual day-to-day work of nurses for people with learning disabilities is influenced by the facilities or service within which each nurse is employed.

Specialist Hospitals for People with Learning Disabilities

Many nurses continue to work in health services for people with learning disabilities, including the few remaining specialist hospitals for people with learning disabilities.  These have been reduced considerably in number and size, and now seek to provide an assessment and treatment function rather than long-term residential care.  In these settings, nurses usually work with adults with additional difficulties, including people with active mental illness; people with challenging behaviour (such as aggression towards self or others); people with offending behaviour; people with complex physical health needs; and older people with learning disabilities who have possibly lived in the hospital for many years.  The practical aspects of the nurse’s role in hospital is largely focused on assessment and treatment of particular difficulties, with the aim of promoting recovery and facilitating an individual’s return to his or her previous level of independence and to his or her community-based accommodation.  This involves providing practical support in most activities of daily living, such as rendering the physical nursing care for people with complex health needs, teaching and reinforcing skills for increased independence, and, on occasion, administering and monitoring medication and other treatment approaches.  Nurses work closely with Consultant Psychiatrists, Psychologists, Social Workers, and Allied Health Professionals in developing and delivering a package of care.

Community-based Facilities

A growing number of Registered Nurses – Learning Disability now work in a range of community-based settings, including nursing homes, residential, day-care facilities, and special school settings, or as domiciliary nurses for people with learning disabilities. 

Nursing and Residential Homes

People living in nursing homes, usually by definition of eligibility criteria, are adults with more complex physical and/or mental health needs.  When all people living in nursing homes have learning disabilities, and the facility is specifically for people with learning disabilities, then the service must employ Registered Nurses – Learning Disability.  Residential homes, which in the main provide support for people with less acute health needs, are not required to employ nurses for people with learning disabilities and often employ staff whose background is more oriented to social work.  However, many residential homes seek the skills of nurses and, whilst not employing them formally in a nursing role, they actively recruit nurses into home manager positions. This can pose a difficulty for nurses: Since they are not employed as nurses, they cannot undertake their clinical nursing role to the same extent as they would were they to be employed as nurses.  Since adults living in residential homes usually are more able and require less support with hands on physical care, the focus is on promoting independence through skills teaching and maintaining good physical and mental health.

pecial Education and Day Services

All children within the United Kingdom are entitled to education until the age of 16 years and, therefore, must receive educational provision tailored to their needs.  As the com plexity of health needs of children with learning disability has increased, some special schools have sought to employ either Registered Nurses – Learning Disability or Registered Nurses – Children’s in order to provide the necessary care to children during their school day. Without nurses on site, children’s opportunities to attend a special school are more restricted than they would be if nurses were present.  Moving on from this, as more people with complex health needs now live into adult years and avail themselves of day-care services, the challenge is to provide care for people who are, at times, in need of nursing procedures during the day.  For instance, people with complex health needs may require enteral nutrition, suctioning, medication administration, or management of seizures.  In the past ten to fifteen years, many special school and day- care facilities have employed people with nursing qualifications in classroom assistant or senior care worker posts in order to capture their experience and knowledge.  However, as they were largely not employed in nursing posts, they could not undertake many nursing tasks.  At times, this resulted in a wasting of resources as community services nurses were called upon to attend day-care facilities to perform nursing procedures; occasionally, people with learning disabilities did not having full access to services. However, increasingly, nurses for people with learning disabilities are being employed within special school and day-care facilities in nursing positions.  Their role largely involves the delivery of nursing procedures for people with learning disabilities attending these facilities.  In addition, nurses also have a role in the provision of health education and in the provision of support in situations that may require first aid. 

Community Nurses for People with Learning Disabilities

Domiciliary community nurses for people with learning disabilities started to emerge in the mid-1970s as an outreach service from hospitals to support people with learning disabilities and their families living in the community.  Since then it as evolved into a large service of several thousand nurses and is an integral component of most community-based services for people with learning disabilities.  The majority of community nurses have undertaken an additional recorded professional nursing qualification in caring for people with learning disabilities living in community settings.  Nurses are usually employed within interdisciplinary community learning disability teams that provide services within defined geographical boundaries (7).  They seek to support parents, family, and other carers (such as staff in residential homes, day-care, special schools), and to continue to support people with learning disabilities in community settings.  The majority of community nurses work with both children and adults with learning disabilities and their families; however, some may work with either children or adults only, depending on whether the nurses are in a dedicated children or adult team.  Community nurses for people with learning disabilities are a specialist nursing service, and, in the main, do not provide day-to-day nursing care such as that provided by the District Nursing (Homecare Nursing) service.  Instead, community nurses provide the additional specialist support required by people with learning disabilities who have additional difficulties. The key reasons for involvement of community nurses have been shown consistently to include:

• challenging behaviour
• mental illness
• provision of advice and some support on physical care
• support in the ma nagement of epilepsy
• issues arising associated with aging
• health screening and health promotion services for people with learning disabilities (8)

Emerging New Areas of Practice

In the past ten years, an increasing number of nurses for people with learning disabilities have developed further specialist roles that have allowed them to work intensively with people with very specific health problems.  The majority of these specialist posts are focused on supporting people with learning disabilities and their families when challenging behaviour or mental health problems are present (9, 10).  Nurses within such specialist roles usually work within interdisciplinary teams, such as behaviour support teams, from which they conduct in-depth assessments and can undertake time-limited, intensive work with individuals and their carers.  Their aim is to provide intensive support at crisis times with the intention of resolving the difficulties, or at least facilitating sufficient progress, so that community nursing and residential services can provide on-going support and the specialist services can gradually withdraw.

The latest area of development in the role of nurses for people with learning disabilities is in their employment within non-learning disability services.  This development is driven by the emphasis on the rights of people with learning disabilities to receive high quality health care and the increasing recognition of the need for specialist support from learning disability professionals within mainstream services if inclusion is to be achieved.  This has resulted, firstly, in several services within the United Kingdom now employing nurses for people with learning disabilities within acute general hospitals.  The nurses’ role is to provide support to general n urses (for instance, to those on medical and surgical wards) who deliver care for people with learning disabilities.  Nurses for people with learning disabilities are involved in pre-admission preparation, assessment of abilities and needs, planning specific interventions to assist people with learning disabilities avail themselves of treatment in hospitals, and co-ordinating the discharge from hospital (11).  There has also been some progress in the employment of nurses for people with learning disabilities within traditional psychiatric Child and Adolescence mental health services.  The aim of such appointments is similar to that in acute general hospitals: to facilitate the inclusion of people with learning disabilities in existing health services accessible by other members of the general public.

Secondly, there is increasing recognition of the usefulness of the knowledge and skills of nurses for people with learning disability in other care settings, particularly in caring for adults with acquired brain injury who require neurorehabilitation services.  The knowledge, skills, and value base of nurses for people with learning disabilities is seen as having some transferability into this area of nursing, in which nurses for people with learning disability would not have traditionally worked.

THE FUTURE OF NURSES FOR PEOPLE WITH LEARNING DISABILITIES

After many years of debate about the future role of nurses for people with learning disabilities, it is now recognised that it is the package of knowledge, skills, and experience these nurses possess, rather than any specific aspect of knowledge or individual skills, that is most important in the care of people with learning disabilities (12).  It seems that nurses for people with learning disabilities have made considerable progress in the past two decades and are no w more valued team members than they have been for a number of years.  There is continuing investment in pre-registration nurse education to prepare nurses to care for people with learning disabilities (13).  There is also a growing awareness of the role of nurses for people with learning disabilities, possibly in part due to the Common Foundation Programme experience in which all nursing students spend twelve months together.  Also, the Government requirement for other parts of the health service to provide services that include people with learning disabilities has led to closer working relationships between general hospitals and services for people with learning disabilities (11).

However, despite these positive developments, further challenges are evident and arise from a changing service philosophy, from the altering demography of people with learning disabilities, and from within the wider field of nursing (14).  These will need to be responded to if continued progress is to be made and nurses for people with learning disabilities are to remain integral to health services for people with learning disabilities.

Changing Service Philosophy

People with Learning Disabilities are Not Ill
The so-called medical model of services, which emphasised that people with learning disabilities needed medical treatment and presented an illness-oriented model, is no longer accepted as the underpinning view of people with learning disabilities.  A more social-oriented model of disability highlights the view that difficulties that arise for people with disabilities often are products of societal attitudes and discrimination (2, 15).  Nurse education is underpinned by a value base that views people with learning disabilities as equal citizens, and that seeks to promote and maintain the healt h of people with learning disabilities within their individual potential.  Nurse education promotes that people with learning disabilities should be valued for who they are as individuals and emphasises a broader nursing and health-oriented model, rather than a medical model.  Nurses for people with learning disabilities need to demonstrate this view in their work with people with learning disabilities and their families.  They need to value the right of people with learning disabilities to make informed choices about their lifestyle and seek to provide the information necessary to facilitate such choices.  As with other areas of nursing, all interventions must be based on accurate and holistic nursing assessment, which contributes to the wider interdisciplinary discussions on service provision, rather than relying primarily on following medical direction.

Use of Mainstream Services

Services for people with learning disabilities in the United Kingdom across the four countries are now underpinned by the concept of inclusion (2, 15, 16, 17).  This highlights the rights of people with learning disabilities as citizens of the country, and, among other things, their right to receive the same high-quality health services as do all other citizens.  It emphasizes the right of people with learning disabilities to have equity of access to mainstream health services when they experience physical or mental illness.  As noted earlier in this article, nurses for people with learning disabilities have important roles in health promotion and improving access to mainstream health services, and are increasingly valued within other fields of nursing.  Arising from this logic is that people with learning disabilities will not need nurses with specific preparation, but rather that all nurses should be able to provide high-quality care for people with learning disabilities.  Indeed, when people with learning disabilities are fully integrated into mainstream services this may well be the case, but it is not the case at present.  However, it is equally true that the majority of people do not need specialist services to meet their physical and mental health needs.

Effective and equitable access to mainstream acute hospitals and primary care services remains a significant challenge and requires further development (6, 18).  Nurses for people with learning disabilities must play a more active role in improving access to mainstream services for people with learning disabilities as a first line of treatment.  This will include collaboration with people with learning disabilities, their families/carers, and staff within mainstream services in order to develop co-ordinated approaches to working with people who have complex needs (19).  Whilst it is accepted that specialist services may be needed for a small number of people with learning disabilities with very complex additional difficulties, the major focus must be on the access to mainstream acute services.  When specialist services are needed, steps must be taken to ensure that the range of treatment approaches is evidence based and reflects those available to other members of the society (18).

Altering Demography Of People With Learning Disabilities
People with learning disabilities are now living longer due to developments in services, including diagnosis, care, and treatment of physical health problems.  In addition to the growing numbers of older people with learning disabilities, higher numbers of children with complex disabilities are now living into their adult years.  The result of both these factors is that there are more people with learning disab ilities with complex health needs and in need of, or receiving, medical interventions, surgical procedures, or intensive nursing care.  For instance, during the past few years, there has been an increase in the number of children with PEG tubes in place who need suctioning.  It is also clear that as people with learning disabilities live longer, the patterns of morbidity and mortality of cardiovascular disease, cerebrovascular disease, and cancer, as seen in the general public, are becoming apparent (17, 20).  It can therefore be expected that nurses for people with learning disabilities will need to increase their clinical knowledge and skills in order to respond to the number of interventions now being used.  On one hand, nurses need to develop the necessary skills, yet on the other hand, they need to maintain a focus on the health-oriented model, being careful not to move towards an illness-oriented or medical-oriented model.  People with complex health needs may require a considerable level of support, but the underpinning value must continue to be one that promotes inclusion, citizenship, informed choice, and opportunities for optimum physical and mental health. Nurses for people with learning disabilities must also develop effective working relationships with emerging new professional groups in the United Kingdom, such as Community Children’s Nurses and palliative care services.

WIDER NURSING ISSUES

Whilst numbering several thousands nurses, nursing for people with learning disabilities is the smallest branch of nursing within the United Kingdom and appears at times to have limited political power in wider nursing decisions.  Most decisions on future direction within nursing are made by nurses with limited experience in working with people with learning disabilities, and it is essential that the views of Reg istered Nurses for people with learning disabilities are clearly articulated and heard in these wider professional decisions.  Within the United Kingdom in the past decade, much discussion and debate has taken place about the need to move towards generalist nursing, which means having a Registered Nurse who can work with all people equally well.  It appears that despite this lack of support in previous reviews of nursing education for the concept of a generalist nurse, it is still on the professional agenda and may happen sometime in the future (21).  Nurses for people with learning disabilities have a wealth of knowledge and research that identifies the value of their role, and this must be made known to a wider audience.  Nurses are taking more opportunity to present papers at conferences and write articles about aspects of their clinical work; this needs to increase and be targeted at nurses and other professionals within other areas of nursing, such as acute hospital and primary care services, not just to fellow learning disability nurses.  If the decision is made to proceed with generalist nursing in the next ten years or so, it is essential that the knowledge and skills of working with people with learning disabilities and their families be incorporated into any revised nurse education.  The worst-case scenario is the belief that generalist nursing actually equates with adult nursing, with the result that the skills in working with other client groups are not included in a revised nurse education plan.  Finally, recruitment and retention of students and nurses in services for people with learning disabilities needs attention.  More accurate publicity that reflects the diversity of the work in this valuable area of nursing is needed.  Upon qualification, nurses for people with learning disabilities will need more guidance about career opportunities, which will enable them to pursue and develop the new opportunities arising in nursing (22).

CONCLUSION

Within the United Kingdom, Registered Nurses – Learning Disability continue to provide skilled nursing care for children and adults with a range of learning disabilities and their families (23).  Over the past decade, their role has developed a renewed focus on a health-oriented model and is underpinned by the philosophy of inclusion of people with learning disabilities as valued citizens within society.  This branch of nursing is now in a stronger position than it has been for many years, but it needs to continue to demonstrate enthusiasm, creativity, and commitment if the progress is to continue.  Crucial to this is the need to develop stronger collaborative links with the wider family of nursing in order that inclusion of people with learning disabilities in mainstream health care settings becomes a reality.

ACKNOWLEDGEMENTS

During the time this paper was prepared the author was in receipt of a Clinical Nursing and Midwifery Research Fellowship from the Health Research Board, Dublin, Ireland.

AUTHOR

Owen Barr, RGN, RNMH, CNMH cert, RNT, BSc (Hons), MSc is employed as a Senior Lecturer in Nursing at the School of Nursing , University of Ulster and is presently the holder of a Health Research Board Nursing and Midwifery Research Fellowship. He is currently completing his PhD investigating the experience of parents of children with disaiblities who are referred to a geneticist.  Owen’s clinical career includes experience in acute hospital setting, the community and in collegiate education.  He has specialized in supporting people with intellectual disabilities and their families. Within his teaching role he focuses on  nursing care relating to people with intellectual disabilities the nursing programs. To date he has 55 publications in a range of nursing and interdisciplinary journals and textbooks and he has also received research grants for nursing and intellectual disability research.

Correspondence:

Owen Barr RGN, RNMH, CNMH cert, RNT, BSc, MSc
HRB Nursing and Midwifery Research Fellowship
Senior Lecturer in Nursing – Learning Disabilities
School of Nursing
Magee Campus
University of Ulster
Northland Road
Londonderry BT48 7JL
N. Ireland
E-mail: O.Barr@ulster.ac.uk