A VISION FOR LEARNING DISABILITY NURSING
A Discussion Document
The United Kingdom Learning Disability Consultant Nurse
Network
Contents
1. Introduction 3
2. Nursing and Health 4
3. The Vision 5
4. The Purpose 5
5. The Rationale 7
5.1 The context 7
5.2 Evidence regarding health needs 8
5.2.1 Health needs 9
5.2.2 Access to health care 11
5.2.3 Health improvement 12
5.3 The changing role of the learning disability nurse 12 6. Building Blocks for Achieving the Vision 13
6.1 Practice 14
6.1.1. Levels of health need 14
6.1.2 Clinical practice 15
6.1.3 Public health role 17
6.2 Education 20
6.2.1 The changing context of nursing and health care 20
6.2.2 Life-long learning 21
6.2.3 Multi-professional education 21
6.2.4 Learning disability nurses as educators 21
6.3 Research 21
6.3.1 Involving service users in research 22 6.3.2 Research and development the way forward 23
6.4 Leadership 24
6.4.1 Growing the leaders of tomorrow 25
7. Taking Forward the Vision 25
7.1 Change management 25 7.2 Influencing policy 26 7.3 Workforce issues 27 7.4 Career pathways 28 8. Actions Required 30 9. References 31
Appendix 1 Consultation process 39
Appendix 2 Further information concerning health needs 44
Appendix 3 Career pathways 45
1. Introduction
The closure of long stay hospitals in the latter part of the 20th century saw the community being fully recognised as the rightful place for people with learning disabilities (Department of Health, 2001; Jones, 1999). Over the last two decades services have increasingly sought to ensure that those they support experience greater choice and control in their lives and that they are included within their local
communities. This change has raised questions as to the appropriate role of specialist health services. As a result there is sometimes a feeling amongst the learning
disability nursing profession that their knowledge and skills are not fully valued and that the contribution that they make to meeting the health needs of their client group is not fully recognised, understood, or utilised.
This document arises from a desire amongst the United Kingdom Learning Disability Consultant Nurse Network to address this issue. It’s aim is both to stimulate
discussion and to provide direction for the development of individual practitioners, service managers, commissioners, educationalists, researchers and the learning disability nursing profession as a whole. It is aimed primarily at those who are employed by virtue of holding a learning disability nursing qualification. However, it is also likely to be of interest to those who hold other positions.
The document is set out in seven sections: • Nursing and health
• The vision
• The purpose of the document • The rationale
• Building blocks for achieving the vision • Taking forward the vision
• Actions required
Throughout the document practice examples have been included. These are by no means exhaustive but do provide actual examples of the work of learning disability nurses and illustrate how such work contributes towards the achievement of the vision set out in the paper.
Comments regarding this document are sought by September 12th. Details of specific
areas where information is requested, and details of how to submit comments, are included in Appendix 1. Once the consultation process is complete all comments received will be collated, analysed and used to inform the final document. This Vision will then be published and distributed as widely as possible to all those concerned with the needs of people with learning disabilities.
2.
Nursing & Health
The Royal College of Nursing (2003) define nursing as:
“The use of clinical judgement in the provision 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 their disease or disability, until death”.
The role of the learning disability nurse has become more diverse over the past century with nurses now working in a variety of settings, with a range of client groups, and across the lifespan. For example some nurses work in community teams, others in residential settings. Some work with clients whose behaviour challenges services, others with those with complex physical and/or mental health needs. Some specialise in working with children whilst others are developing roles supporting older people. As evidence of unmet health needs amongst people with learning disabilities grows one key role of the learning disability nurse has been recognised as being ‘…to assist and support’ people with learning disabilities ‘to become and remain healthy’ (Quality Assurance Agency, 2001).
The World Health Organisation (1948) define health as:
“ a state of complete physical, mental and social well being, and not merely the absence of disease or infirmity”.
However, as noted by Ewles and Simnett (2003) this definition has been widely criticised for being unrealistic and too idealistic since few people would really feel themselves to be in a state of ‘complete’ well being. Dubos (1979) provides a more contemporary definition arguing that health and disease ‘cannot be defined merely in terms of anatomical, physiological, or mental attributes’ suggesting instead that health relates to the ability of individuals to function in a way which is acceptable both to them and the groups to which they belong.
Health promotion encompasses mental and physical health as well as a concern for addressing the determinants of health, including behaviour and psychological well being. This means that all learning disability nurses, regardless of the setting in which they work, have a health promotion element within their role. Thus a learning
disability nurse working in a forensic setting may strive to promote better mental health and work with their clients to address their offending behaviour, a nurse working with clients with mental health problems may find that some have physical health problems which also require support, whilst others working with clients with complex health needs will spend a considerable amount of their time seeking to achieve the best possible health for their clients.
3. The Vision
The United Kingdom Learning Disability Consultant Nurse Network believes that if the profession is to progress into the 21st century, “with a renewed sense of purpose, devoid of confusion and ambiguity associated with the legacies of the past”, (Jukes and Bollard 2003) then it requires a dynamic and evolving vision to promote,
articulate, and drive the distinct identity and unique expertise of the learning disability nursing profession on a UK basis.
The vision proposed in this document is:
“That the knowledge and skills of learning disability nurses will be utilised effectively to improve and maintain the health of children, adults and older people with learning disabilities across all settings thus promoting inclusion and equity of healthcare provision and outcomes”
4.
The Purpose of the Document
With the shift in emphasis from hospital based care and segregation, to community based care and inclusion, services for people with learning disabilities are now provided in a variety of community and residential settings by a range of statutory, and (increasingly) voluntary and independent sector providers. This, in turn, has meant that the settings in which learning disability nurses work, and the nature of their role, has both developed and expanded (Northway, 2004a). Nonetheless no profession can rest upon its laurels particularly in the context of rapidly changing and developing services.
This document therefore aims to support the learning disability nursing profession to:
Have the confidence and courage to recognise and articulate their value and impact within an holistic approach to healthcare.
Reaffirm the place of learning disability nursing within the family of nursing.
Articulate and develop their practice within the context of developing services in their country within the UK.
Develop and articulate their contribution to improving health and enhancing quality of life for people with learning disabilities across the lifespan.
A social care model of service provision, in keeping with changing philosophies of care, now predominates in many service settings. In some instances this has led to a neglect of health needs in the mistaken belief that a focus on such needs constitutes a drift back towards the medical model. For example, in Victoria, Australia in the mid 80’s there was the abandonment of employing specialist staff (including nurses) in the provision of services to individuals with a learning disability. It has been recognised
some twenty years later that such a philosophy has resulted in increased vulnerability and inadequate service provision for many, and consequently there has been a move towards re-establishing specialist services (Davis et al 2002).
There is also some confusion regarding the difference between a social model of service provision and the social model of disability. The former relates primarily to who provides the support that people with learning disabilities receive. The latter refers to a view of disability which argues that people with impairments are disabled by a range of physical, social, economic, psychological and attitudinal barriers that prevent or limit their full participation in society (Prime Ministers Strategy Unit, 2005). Ill health and behavioural challenges may limit participation in society. There is now strong evidence that people with learning disabilities experience significant barriers to across many arenas including heathcare (see Section 5.2 below). As a result people often experience slower/inadequate detection of health needs and early interventions leading to a reduced qulaity of life and premature death. The focus of nursing interventions within the social model of disability is therefore upon reducing or eliminating barriers to good health.
This vision seeks to provide reassurance to the learning disability nursing profession that to apply a bio-psycho-social (holisitic) approach to clinical practice is entirely right and proper, and that clinical interventions provided to clients based on the specialist skills and knowledge possessed by the nurse are in keeping with contemporary service philosophies and ideology.
It could be argued that the emphasis given to social models of service provision has resulted in some learning disability nurses having lost, or no longer seeing themselves as having an association with, the wider “family of nursing”. We believe that the proactive involvement of all learning disablity nurses in wider nursing developments will bring benefits for people with learning disabilities, their families and carers. This does not equate to the adoption of a medical or sickness model but is consistent with the public health role of the nurse.
Nurses need to be aware of national policy developments and the impact of these on the lives of the people they support and their practice (see Section 5.1). All learning disability nurses should engage in activities that influence policy development at all levels (see Section 7.2).
Learning disability nurses need to recognise the unique contribution they can make to lives of children with learning disabilities and their families. A key aim of this vision is to make sure that the skills of learning disability nurses are available to support children with learning disabilities right from the start (Northway 2004b). They also make a key contribution during the school years, during transition to adult services, through adulthood and into older adulthood. In short they provide support across the lifespan.
It is the view of the United Kingdom Learning Disability Consultant Nurses Network that a UK vision for learning disability nursing will provide the profession with the direction required to ensure that the learning disability nursing workforce has the appropriate knowledge, skills and competencies to support the health needs of people with a learning disability regardless of the environment of care. It will also help
secure the very necessary nursing contribution to learning disability services nationally, and ultimately, improve the quality of all nursing care offered to people with learning disabilities, their families and carers across the health economy.
5. The Rationale
When a professional group sets out a vision for its future development there is a danger that it could be interpreted simply as a means of preserving and promoting its own role. It is thus important to understand that the starting points for this document were:
The recognition that learning disability services have undergone tremendous
changes in the past three decades;
That people with learning disabilities continue to be excluded and segregated
as the result of challenging behaviour;
That there is growing evidence of a very high incidence of unmet health need
in the population of people with learning disabilities and;
That this has a negative impact upon many people’s quality of life.
The belief that the learning disability nursing profession makes a significant
contribution to health improvement.
This section sets out the context within which the document was produced, the
evidence regarding health needs and the changing role of the learning disability nurse.
5.1
The
context
The majority of people with learning disabilities have always lived in community settings either with families, independently, or within social services hostel accommodation (Mental Health Foundation, 2001, Mencap, 1998). Nonetheless, formal specialist health provision has traditionally been delivered within long stay institutions and has historically been limited to those residing within them (Phillips et al, 2004). Over the past two decades the closure of most long stay hospitals has led to the development of specialist health services in the community.
Devolution of governmental responsibility for health and social care means that England, Scotland, Wales and Northern Ireland have each developed their own policies in relation to the provision of services for people with learning disabilities. Learning disability nursing also needs to be considered within the context of wider developments in nursing and each country has developed its own policies in relation to nursing and, in some instances, specifically in relation to learning disability nursing. Table 1 below sets out the key policies in each country and readers are advised to refer to the relevant policies for their own country whilst also recognising the value of reviewing other policy developments to allow for comparisons to be made.
Nursing policy Learning Disability
Policy Learning Disability Nursing Policy England Making a Difference
(Department of Health, 1999a)
Liberating the Talents (Department of Health, 2002) Valuing People (Department of Health, 2001) None
Northern Ireland Valuing Diversity : A strategy for Nursing, Midwifery and Health Visiting (DHSSPS, 1998) Currently, a strategic review of all community nursing disciplines is underway. Community Health Nursing : Current practice and possible futures (DHSSPS , 2003)
“Equal Lives” Review (DHSSPS, 2004) of, policy and service provision for people with a Learning Disability.
1st Consultation phase completed.
None : But recently established and DHSSPS endorsed Professional Development Forum for Learning Disability Nursing in Northern Ireland. Central responsibility is to advise DHSSPS on impact of policy on LD Nursing Profession Scotland
Caring for Scotland (Scottish Executive, 2000a)
Nursing for Health (Scottish Executive, 2001a) Choices and Challenges (Scottish Executive, 2002a) A Framework for Maternity Services in Scotland (Scottish Executive, 2001b)
The same as you? (Scottish Executive, 2000b) Promoting Health, Supporting Inclusion (Scottish Executive, 2002b) Wales
Realising the Potential (National Assembly for Wales, 1999)
The All Wales Strategy (Welsh Office, 1983) Fulfilling the Promises (National Assembly for Wales, 2002a)
Inclusion, Partnership and Innovation (National Assembly for Wales, 2002b)
Table 1: Relevant Policy Developments in the United Kingdom
5.2 Evidence regarding health needs
As members of UK society people with learning disabilities have the right to be valued and supported as equal citizens. This includes the right to receive equitable health care. However, the evolving evidence base provides proof that they experience health disparities (Barr et al 1999, NHS Health Scotland, 2004, Mencap 2004). This is a consistent theme in many of the policy documents outlined in Table 1 which seems unacceptable in a policy context which promotes equity and social inclusion.
Whilst life expectancy continues to be significantly shorter when compared with the general population (Hollins et al 1998, Patja 2000) there is evidence that the number
of people with learning disabilities will increase by about 1% over the next 15 years (Department of Health, 2001). Greater numbers of people with learning disabilities are now surviving into adulthood and living longer into old age with many presenting with complex and multiple health needs (DoH 2001). These factors have obvious implications for all services including those provided by learning disability nurses.
5.2.1 Health needs
Evidence demonstrates that the health needs experienced by people with learning disabilities are greater than those experienced by the non learning disabled population, with many needs being unrecognised and unmet. This has a significant impact on individuals as health consumers, on their families, on other carers, and on all aspects of the health service (Beange et al 1995).
Evidence also clearly points to the differing pattern of health needs of this group and, as a result, people with learning disabilities may have a different cause of death to that of the general population (Cooper et al 2004). Many health needs, such as gastrointestinal disorders, mental ill health, epilepsy, dental problems, swallowing problems, respiratory infection and nutritional problems (Howells 1986, Wilson and Haire 1990, van Schrojenstein Lantman-de Valk et al 1997), are more common and are present in greater number in people with learning disabilities than in the general population.
Assessing the health needs of people with learning disabilities can be complex and as a result many health needs go unrecognised and untreated. For too many people this can have grave consequences, and for many others will have a significant negative impact on the quality of life of the person with a learning disability, their family and carers.
It is outside the scope of this report to detail the full evidence of the extent of the health needs and disparities of people with learning disabilities across the lifespan. Further information can be obtained from the reports set out in Appendix 2. Table 2 below summarises the key health needs of people with learning disabilities. Learning disability nurses have the skills and knowledge to make a significant contribution to ensuring that these needs are both recognised and addressed.
Anxiety Patel et al 1993, Moss et al 2000
Common mental illness in people with learning disabilities at all ages, though often unrecognised. Can manifest as challenging or disturbed behaviour, making diagnosis problematic.
Autistic Spectrum Disorder
Public Health Institute of Scotland 2002,
Medical Research Council 2001
Estimated to be 60 per 10,000 for children. No data available for prevalence within the adult population. Many have additional health needs – mental health, communication, epilepsy and behaviour problems.
Cancer Cooke 1997,
Hasle et al, 2000, Patja et al 2001
Common cause of death, however there is a different cancer pattern experienced, with gastric, oesophageal and gall bladder being highest. Higher levels of leukaemia in people with Down Syndrome.
Cardiovascular Hollins et al 1998 2nd highest cause of death. Cardiac abnormalities common
in specific syndromes such as Down syndrome. Investigation, treatment and monitoring required.
Communication NHS Health Scotland 2004
Always impaired at some level. High prevalence of problems with comprehension, expression and pragmatic communication in social settings. Overestimation of communication abilities by paid carers
Challenging
Behaviour Emerson et al. 1998 Keirnan & Alborz. 1996 Emerson et al. 1997
Studies suggest that between 12 – 17% of people defined as having an intellectual disability will display challenging behaviour.. Physical aggression, self injury and destructiveness towards the environment tend to be the most commonly reported specific forms of challenging behaviour.
Depression Richards et al 2001 Found to be 22% in people with learning disabilities compared to 5.5% by age 36 in general adult population, excluding social class and physical illness.
Dementia Cooper 1997,
Patel et al 1993, Holland 2000
Higher rates than general population and occurring at an earlier age.
Dental Health Cumella et al 2000 DoH 2001
Higher rates than in the general population of both acute and chronic dental problems. Higher rates of tooth and gum disease, with lack of awareness by individual or carer.
Endocrine Ali et al 2002 Thyroid dysfunction of 55% found in a group of people with Down’s syndrome, mostly previously unknown or due to a subclinical hypothyroidism.
Epilepsy Sillanpaa et al 1999 Increased prevalence ranging from 10-20% in people with a mild learning disability up to 50% in those with profound intellectual disabilities compared to 1% in the general population. Epilepsy is of a more complex nature with higher levels of polypharmacy, complex seizure types and sudden unexplained death as a result of seizures.
Gastro - intestinal Bohmer et al 2000 Higher rates of gastric problems. Reflux oesophagitis, helicobacter pylori and consequent complications common and can be treated.
Hearing Evanhuis et al 2001 Hearing impairment of 21% prevalence experienced by those with a mild learning disability under 50 years old compared to 0.2-1.9% in general the population. Higher prevalence still in people with profound and multiple impairment.
Offending Behaviour
Gudjohnsson et al 1993 Murphy & Mason 1997
8.6% of suspects screened in 2 police stations found to have intellectual functioning in the learning disability range.
6% of sample (70) people on probation orders assessed as having significant impairment in cognitive and social functioning
Orthopaedic & Accidents
Center et al 1998 Higher rates of osteoporosis and fractures experienced
with lower bone density when compared to the general population.
Respiratory Hollins et al 1998 Higher death rates associated with pneumonia, secondary to swallowing problems, and asthma and at an earlier age. Highest cause of death for people with learning disabilities.
Schizophrenia Lund 1985,
Doody et al 1998 Higher prevalence rate (3%) than in the general adult population (1%), associated with more negative symptoms, memory problems, epilepsy and greater support needs.
Self-injury Collacott et al 1998 High rates of self-injury found at 17.4%, with 1.7% being of a severe and frequent nature, associated with autism, IQ, hearing and immobility.
Sexual Health Hollins and Perez 2000, Brown et al 1995
Limited focus on the sexual health needs of people with learning disabilities who can be victims of sexual abuse with associated sexual healthcare needs. Women with learning disabilities have a low uptake of national screening programmes.
Syndromes Gilbert 1996 In 1996 just over 2000 syndromes had been described, The A-Z Reference Book of Syndromes describe 90 of these in detail including 36 that are associated with an increased incidence of learning disability . Many syndromes are also linked to specific behavioural phenotypes.
Vision Evenhuis et al 2001 4% prevalence with mild intellectual disability under 50 years old compared to 2-7% in general population. Higher prevalence with lower IQ.
Table 2 - Summary of the Health Needs of People with Learning Disabilities
5.2.2 Access to healthcare
These significant differences in health needs must be recognised and responded to by practitioners, researchers, service planners, service commissioners and service deliverers in order to address the range of specific needs of this group. People with learning disabilities are high users of health care and require access to all areas of the health service - generic health services, the everyday health services used by the whole population, and specialist child health and learning disability health services (Department of Health 2001, Scottish Executive 2002b).
However, people with learning disabilities experience barriers to accessing effective healthcare. For example they may not receive accessible health promotion information, they may not be offered routine screening services, and they may experience negative attitudes when receiving health care. Specialists in learning disability health services, including learning disability nurses, play a crucial role by providing assessment, treatment, intervention and support for people with learning disabilities, their carers, generic health services and others. This is important as the range of health care needs of people with learning disabilities cannot be met by primary care services alone; a partnership approach between primary care, child health, mental health, acute care and specialist learning disability health services across the lifespan is essential.
5.2.3 Health improvement
Two key approaches are required to address the wider public health needs of people with learning disabilities. They need to be included in all health improvement initiatives aimed at the whole population to ensure they have equity of access to national screening programmes, health education, and health promotion activities. In
addition to this many will require specific, targeted programmes, aimed at their differing health needs (NHS Health Scotland 2004. Department of Health 2001). To enable health improvement, support and education need to be available throughout all aspects of the healthcare journey from primary health care, onto general hospital care as well as having access to specialist child health, mental health, and learning disability health services when necessary. Once again learning disability nurses have a key contribution to make in working with colleagues from across the health service, and at a range of levels, to ensure that these two key areas are addressed.
Learning disability nurses must be proactive and creative and recognise their contribution to supporting people with learning disabilities in achieving equitable healthcare.
5.3 The changing role of the learning disability nurse
The role of the learning disability nurse has been subjected to regular scrutiny for over thirty years initially due to proposals in the White Paper ‘Better Services for the Mentally Handicapped’ (DHSS,1971), and targets for reduction in hospital in-patient numbers.
Debates about the appropriateness of this part of the nursing register within
contemporary models of service provision have revolved primarily around two issues:
Whether the support needs of people with learning disabilities are primarily
social or health in nature
Whether nursing support should be of a specialist or generic nature
Responses to these issues have included a nursing curriculum based upon a social care model (ENB, 1985) and the validation of joint training programmes in the 1980’s producing practitioners qualified as both learning disability nurses and social workers (Brown, 1994). The need for a completely new form of practitioner was also
considered, but rejected.
In 1991 the Cullen Report (Cullen, 1991) explored options for the role of the learning disability nurse within the context of changing responsibilities for health and social care provision arising from new arrangements for community care. The preferred option was for the health promotion role of the learning disability nurse to be advanced. It was argued that all people with learning disabilities had both health and social care needs although the level and complexity of these needs would vary from person to person. The skills and knowledge of the learning disability nurse were seen as being ‘facility independent’ meaning that they were not restricted to being used solely in the context of specific settings such as long stay hospitals. The report recognised that nurses could therefore work to address health needs across the range of settings in which people with learning disabilities live, work, and socialise. Such a role would appear appropriate given the level and nature of health need set out in sections 5:2 of this document, and the range of contexts within which learning disability nurses work.
In 1995 Continuing the Commitment (Kay et al, 1995) confirmed the Government’s commitment to this part of the register and sought to clarify and articulate the specific
contribution of the learning disability nurse to the support and care of people with learning disabilities. In this document the purpose of the learning disability nurse speciality within health services was described as being “to mitigate the effect of disability, to facilitate community access, to increase competence and control, to maximise choice, and to enhance the contribution of others involved in supporting individuals with a learning disability”.
More recently devolution of Government has meant that some countries have published documents relating specifically to the role of the learning disability nurse (see Table 1).
6. Building Blocks for Achieving the Vision
To achieve the vision set out above it is essential to consider developments in nursing practice, education, research, and leadership. It is also necessary to identify how learning disability nurses can make a contribution not only at the level of the individual client but also at a strategic, population and public health level. Each of these areas will be considered in this section but as Figure 1 indicates they should be seen as interlinking and interdependent.
Figure 1 – Bringing together the building blocks for achieving the vision
6.1 Practice
There is strong evidence of the high level of health needs amongst people with learning disabilities and the fact that these needs often go unrecognised and unmet. All four UK countries emphasise in their policy documents the need to place the person with a learning disability at the centre of both practice and development, thus
Practice Education Research Leadership Learning Disability Nursing
the remaining text should be read in this vein and in the context of the policy pertinent to each country.
6.1.1. Levels of Health Need
People with learning disabilities are individuals and hence will have differing levels of health need. This has implications for the nature of support they may require from learning disability nurses. Before discussing learning disability nursing practice it is important to consider what these differing levels of health need might be (Table 3 below)
Everyday health needs For example, everybody needs to be registered with a GP and dentist and to be able to access national screening programmes, chronic disease management programmes and other health promotion programmes which are offered to the population as a whole.
Extra needs because of
learning disabilities Many people with learning disabilities may require additional support to access health care. For example they may require information to be presented in accessible formats and additional support to prepare for health intervention. In addition some may additional health needs which are associated with their learning disability. For example adults with Down Syndrome require their thyroid function to be regularly monitored and are at increased risk of dementia.
Complex health needs Some people with learning disabilities will have complex health needs whereby a number of health conditions can co-exist. These can include (for example) poorly controlled epilepsy, sensory impairments, physical impairments, difficulties with eating, mental health problems, complex behavioural needs and mental health problems.
6.1.2 Clinical practice
The National Network for Learning Disability Nursing (www.nnldn.org) has adapted the Chief Nursing Officer for England’s ten key roles for nursing to restate the value and contribution that learning disability nurses bring to the healthcare arena. These roles provide a framework for translating the vision outlined in this document into practice.
To make referrals direct, to a therapist, social worker, psychiatrist, housing
officer, voluntary worker, or an advocate.
To accept direct referrals for clients with specified conditions and within
agreed protocols.
To manage client caseloads, including admission and discharge,
behavioural and mental health issues.
To run clinics/therapeutic groups for example for epilepsy or sexual
health.
To be able to prescribe medicines and treatments.
To take the lead in the way local health services are organised and the way
that they run, including joint working with social services.
Practice Example
One Trust has developed two nursing posts which are designed to provide
specialist nursing input to people who have a learning disability and mental health need.
Their role is to:
• Provide mental health advice and support • Build links with adult Mental Health / Child &
Adolescent Mental Health Services / Older People’s Mental Health Services
• Develop relapse indicator guidelines
• Monitor mental state
• Monitor medication efficacy and side effect profile • Provide specialist assessments
• Undertake risk assessments
• Implement therapeutic interventions
Practice Example:
One learning disability nurse works as a college nurse for people with severe to profound and complex learning disabilities, in a provision on a mainstream college campus. Working in partnership with learners, families and a range of
professionals, she is able to facilitate and support transition to, and participation in, further education for people who may otherwise be unable to access it. She provides specialist advice, support and training to staff and carers, developing protocols and guidelines to support service users. Health needs are identified and managed safely and effectively, enabling optimal engagement in class. This promotes inclusiveness by ensuring medical needs such as gastrostomy,
catheter/stoma care, oxygen therapy or complex epilepsy did not preclude people from attending college programmes.
To identify and recommend diagnostic investigations/specialist assessment
such as physical health tests, psychological, neurological, psychiatric therapeutic assessments.
To devise specialist care plans to provide complex, social, psychological
and behavioural and medical interventions, and monitor their efficacy.
To provide and facilitate health education and promotion activities
including assistance in accessing health screening, utilising skills to overcome barriers to communication.
To provide advice, support and education to clients/carers/social
carers/primary care staff/acute sector staff to assist in meeting healthcare needs and accessing mainstream health care services
Good practice is that which uses the best available evidence when making clinical decisions in health care practice (Hincliff et al, 2003). Therefore learning disability nurses require skills in accessing, appraising and utilising evidence in order to plan, develop and deliver interventions designed to promote health gain.
Practice Example:
Some community nurses have taken on a liaison role between health services to ensure a better quality of service for people with learning disabilities who have epilepsy (Loughran & O’Brien, 2002). There are also examples of learning disability nurses working within Neurology Departments providing a nurse led clinics and support to all patients with epilepsy, such as occurs at Princess Royal University Hospital, Farnborough. O’Brien & Loughran (2004) discuss how a multi-professional model has been developed to work through risk with individuals who have a learning disability and epilepsy, one of the authors of this tool is a learning disability nurse.
Practice Example:
Nurses in one community health team have set up a ‘link nurse’ scheme and now provide regular visiting clinic style services to a range of settings where people with learning disabilities live in the team’s area. This new model of service delivery has allowed nurses in the team to educate direct care staff about the health needs of people with learning disabilities, work pro-actively with staff and clients to promote health and well-being and support care staff and people with learning disabilities to navigate their way around mainstream health services. This scheme was included in the annual Trust ‘Guide to Good Practice’ and received an extremely positive service user evaluation.
6.1.3 Public health role
The purpose of public health is to:
Improve the health and wellbeing of the population Prevent disease and minimise its consequences Prolong life
Reduce inequalities in health (adapted from Skills for Health, 2004)
This is achieved through public health practice which:
Takes a population perspective
Mobilises the organised efforts of society and acts as an advocate for the
public’s health
Enables people and communities to increase control over their own health and
wellbeing
Acts on the social, economic, environmental and biological determinants of
health and wellbeing
Protects from, and minimises the impact of, health risks to the population Ensures that preventative, treatment and care services are of a high quality,
based on evidence, and are of best value (adapted from Skills for Health, 2004)
As well as working at the level of individual clients learning disability nurses are able to make a key contribution to the health of people with learning disabilities at a population level.
People with learning disabilities represent a small but needy group within any local community. Nonetheless by adopting the strategies outlined above learning disability nurses can ensure that strategies are put in place which will address the health needs of their client group. For example by considering how many people with learning disabilities within a given area are likely to experience a certain condition it can enable the effectiveness of any preventative strategies to be assessed or, where preventative interventions are not possible, to make sure that services are in place sufficient to meet identified need.
The last decade has seen a range of documents highlighting the levels of health need amongst the learning disabled population (see Appendix 2). Each UK country has thus developed a policy response (see Table 1) setting clear aims for:
the improvement of the health of people with learning disability the reduction of health inequalities
the involvement of people with learning disabilities within mainstream
developments
the removal of barriers to accessing health services challenging discrimination within health services
There are many examples across the UK where learning disability nurses have undertaken work with individuals and groups in supporting people to take more control of their own health. Equally there are examples where a more strategic effort
has been made to ensure that mainstream actions are accessible to people with learning disabilities. However more of this work needs to be done.
Practice Example:
Another learning disability service has been unable to secure funding for an acute liaison nurse, yet the issues for people with learning disabilities are well
recognised by all concerned. Local services agreed that work still needed to be done. A core group of senior nurses from the acute trust and the primary care trust have begun to work on consulting people with learning disabilities and other key people. So far the core group have drafted a policy, developed a hospital passport and are now looking at how to include indicators on the Electronic Patient Record to achieve a higher level of early identification of additional health needs. The relationships built up between the learning disability nurses and the executive nurses within the acute trust will provide essential partnerships for future work and assist both groups to address barriers to joint working and improve access to healthcare for people with learning disabilities locally.
Practice Example:
An acute liaison post was part of a project set up in response to research, national policy guidance, the views of local people with learning disabilities and those supporting them. These indicated that people with learning disabilities had poor experiences when using general hospital services. The aim was to improve these experiences.
The post was county-wide and covered 5 large general hospitals. It was funded for a year and is very much a developmental and health facilitation post.
Main areas of work included the following: • promoting awareness of the role
• providing advice, support and input to people with learning disabilities using hospital services and those supporting them, including hospital staff • training/ awareness raising about learning disability for hospital staff • developing protocols and pathways regarding the care of people with
learning disabilities in hospital
• developing information to aid communication with and understanding about people with learning disabilities in hospital
• sharing good practice
• developing better links between hospitals and community learning disability teams
• putting in place strategies to promote and support continuation of the work after the first year of the project
The evidence base of health need (see Table 2) provides learning disability nurses with a population perspective of health need. However, at a local level there is a need to undertake audits to identify similarities and discrepancies between the local
population of people with a learning disability and the local non disabled population (a process known as Health Equity Audit).
This type of audit provides the basis for the development of local strategic plans which target resources to the areas of need. Learning disability nurses need to continue to be conscious of national policy and direction for general health services and key into opportunistic developments in order to engage with colleagues within public health, primary care and other health services.
Practice Example:
Learning disability nurses and public health specialists worked on the development of a risk indicator to support decision making in relation to attempting / undertaking cervical smear testing for women with learning disabilities.
Practice Example:
One Trust is currently looking to develop a specialist learning disabilities team within the existing CAMH’s (Child and Adolescent Mental Health) provision. The first member of the team to be appointed was a learning disability nurse. Her role initially is to help establish the rest of the multi-professional team, work on a service framework to include referral points, criteria for cross boundary working and establish links with education and social services. Currently she is mapping out areas of need, developing new approaches and pathways to aid children with learning disabilities to access a more needs led service.
Practice Example:
One learning disability nurse works for a primary care trust in the health promotion department. His role is as a health promotion specialist for people with a learning disability and their carers
He sits within the public health directorate and is the public health lead for learning disability in the area which covers 5 PCTs. His role involves working with the local learning disability trust, social services, independent providers and the voluntary sector as well as primary care teams.
6.2 Education
Education is an essential building block to achieving the vision set out in this document. However, in discussing this it is important to consider the context within which learning disability nursing works, the importance of life long and multi-professional education and the role of the learning disability nurse as educator.
6.2.1 The changing context of nursing and health care
Learning disability nursing has moved away from the medical model of health and supporting the doctor, towards a more holistic approach which considers how a range of factors in a person’s life interact and interrelate to determine health status. In order to fulfil the diverse range of roles required, and respond to developments in healthcare provision, learning disability nurses need to be prepared by a new form of education and training (Alaszewski et al, 2001) which includes leadership and research skills as essential components. (Lee, 2002; International Council of Nurses, 2001). Both the content of educational programmes and the means by which they are delivered need regular review to ensure they keep pace.
If the vision set out in this document is to be realised then it follows that learning disability nurses need to be able to address, at a range of levels, the factors which influence the health of their clients and to be able to use the best available evidence when doing so. Learning disability nurses thus require a sound knowledge of the art and science of nursing, the biological and social sciences, critical thinking, problem solving, and communication skills. They need to understand the relationships between theory, research, and practice which comprise the developing knowledge base. They also need to cooperate and collaborate with clients, their families and carers, and other professionals to advance knowledge of health promotion, maintenance, and
restoration and also to translate that knowledge into policies and practice.
Methods of teaching and learning need to encompass a range of approaches which include problem-based learning, critical thinking and web-supported e-learning. People with learning disabilities as well as their families and carers also need to be enabled to play a key role in the planning and delivery of nurse education.
Practice Example:
A learning disability nurse and public health nurse worked together to develop and ‘easy to read’ leaflet about the influenza vaccine.
Practice Example:
One University has developed an advisory group of people with learning disabilities who represent local self advocacy groups. This group meets on a regular basis and has been involved in developing teaching materials, teaching students in a classroom setting, offering placements to students and providing students with feedback concerning their presentations. They have also worked with the University to develop easy to read versions of research reports and a proposal for research funding.
6.2.2 Life-long learning
Nurse education cannot be confined just to pre-registration preparation. The changing nature of service provision and the rapidly expanding nature of knowledge means that a culture of life long learning must be nurtured.
The NHS Knowledge and Skills Framework (DoH 2003) is concerned with the NHS investing in the ongoing development of all its staff. The post-outlines being
developed within services will need to be analysed to indicate the required post registration requirements for life-long learning.
Educational opportunities thus need to be available at diploma, bachelors, masters and doctoral levels delivered in a manner which is sufficiently flexible to meet both changing client and service needs and the demands of balancing study with clinical work.
6.2.3 Multi professional education
Since they work in a multi-professional and interagency context learning disability nurses have much to gain from engaging in shared and joint learning at both pre and post registration levels. In addition to learning disability specific education there is a hence a need for generic and collaborative educational activities involving all health care professionals. This will develop recognition of each professional group’s perspective, contribution and strengths, increase the interface between the professional groups, and encourage true partnership working.
6.2.4 Learning disability nurses as educators
All learning disability nurses play a role in the education of people with learning disabilities, their carers and families and other colleagues within services. For example they may teach people with learning disabilities about the need for health eating, exercise and accessing screening programmes. They may be involved in teaching families and carers about the effects and side effects of medication. The provision of this education should equally be evidence based, linked to the learning disability nursing role and within their scope of practice.
Practice Example:
Nurses have been actively working to raise awareness and improve the health of individuals who have a learning disability and epilepsy. In Barnet community based learning disability nurses have trained over 1000 social care staff in the management of epilepsy, and the administration of rectal diazepam (Pointu & Cole, 2005). Sterrick & Foley (1999) describe a similar training initiative implemented in Scotland, by learning disability nurses.
6
.3 Research
Excellence in health care is dependent on research and development (RCN 2004). Yet generally nurses are failing to maximise the opportunities for the nursing contribution within NHS research and development (DoH 2000).
Parahoo et al (2000) suggests that learning disability nurses are less likely to report using research to inform their practice than nurses from other branches. Possible reasons for this are suggested as organisational constraints as well as the likelihood that proportionally less research is conducted in learning disability nursing when compared to other specialisms. Nonetheless learning disability nurses need to see research and development as crucial to their practice (Nursing and Midwifery Council, 2003), supporting clinical competence and credibility, informing care delivery, and developing the evidence base for nursing and learning disabilities. To achieve this learning disability nurses need to:
access and use evidence in practice,
contribute to the development and expansion of the knowledge base from
which nurses draw,
extend capability and research awareness through its identification as a core
competence at all levels
enhance capacity through developing this as a key role with dedicated time
identified in practice
utilise ‘inclusive research’ methods (Walmsley, 2001)
Pre and post registration learning disability nursing education needs to develop knowledge and skills in areas which include research methodology and processes, theoretical perspectives, evidence-based practice and research governance.
6.3.1 Involving service users in research
For all learning disability nurses conducting and examining research evidence, the minimum requirement should be how the research matters to people with learning disabilities. This will include how people with learning disabilities can be involved in research and how research is disseminated and accessed by people with learning disabilities. Learning disability nurses need to understand participatory and
emancipatory models of research in order to facilitate the development of ‘inclusive research’ methods in practice.
Practice Example:
Nurses in a specialist Community Health Team in the North West have established practice and process standards regarding the use of evidence to support and improve practice. Each nurse in the team has a nominated area of special interest about which they maintain an evidence based resource. Standards include maintenance of a contemporary evidence base, critical appraisal of articles and reports included in each resource pack, and the provision of topic specific education to nursing and non-nursing colleagues in the team.
Wherever possible nurses reference the source of recommendations made in care plans against evidence of good practice. This has increased their confidence and credibility to take up their roles as educators, work jointly, and influence the work of ‘mainstream’ health colleagues.
‘Inclusive research’ has been developed as a term (Walmsley, 2001) which describes the variety of levels and roles of involvement which people with learning disabilities have from taking part in other people’s research through to owning or controlling the research project. There is still a long way to go before ‘inclusive’ research principles are more widely practiced (Walmsley, 2004).
Practice Example:
A number of learning disability nurses have undertaken inclusive research and recognised the need to involve people with learning disabilities at all stages of the research process (see for example Ferguson, 2004; Ham et al, 2004; Richardson, 2000; Northway, 2000).
6.3.2 Research and development - The way forward
The challenge for learning disability nurses is to understand research as a way to answer day to day clinical questions either through networking, accessing evidence, or conducting research. These activities should not be seen as the domain of the few ‘strange breed’ of learning disability nurses in dedicated research posts but as one part of a broader role. Most nurses will never be employed solely as a researcher or
Practice Example:
Oxleas Mental Health and Learning Disability NHS Trust have employed users and carers as researchers as part of a research project funded by the DoH Primary Care Studies Programme evaluating personal health profiles for people with learning disabilities. The personal health profile was developed in 1999 by a learning disability nurse working for Oxleas who became the Senior Clinical Researcher managing the team of researchers working on the project. Users and carers were involved in the project from the beginning, engaging in processes around the design and membership of the steering group.
The study is a three year randomised control trial which began in 1992, recruiting over 200 people with learning disabilities and their carers as participants from 43 GP practices. Four people with learning disabilities were employed as researchers to interview participants with learning disabilities and 4 carers to interview carers. User researchers were supported in their interviews of users participants by a health professional who noted respondents answers. The project is felt to be one of the largest databases of user informants. This is due to user researchers advising on the research tool designed specifically to interview people with learning
disabilities. The tool is designed with pictures and response cards that the respondent posts in a ‘yes’, ‘no’, ‘don’t know’ boxes. It is felt that the quality of responses may have been improved by carers interviewing carers and users interviewing users. The researchers have also been engaged in coding interviews and inputting data onto the data bases, speaking at conferences and further dissemination when results are available.
academic and we cannot rely solely on the ability of those who are in those positions to construct the evidence base for clinical practice. Brimblecombe (2004) noted that whilst prioritising the time for research and development activities can be difficult it creates the opportunity to develop skills which contribute to the challenge of new and established practice. Where good practice exists this needs to be analysed and
disseminated widely to benefit others both nationally and internationally.
Research and development standards in learning disability nursing should be parallel to that in other health professional groups (RCN 2004). This requires an infrastructure with commitment from individual learning disability nurses, service managers and education providers. Research and development should be a core competency from novice to advanced learning disability nurse practitioner. Development through the different levels of practice will be achieved via the acquisition of knowledge and skills through post registration qualification and experience. To ensure that research is responsive to the needs of people with learning disabilities collaboration is required between nurses in practice, academics, service users and carers.
6.4 Leadership
Faugier (2004) states “the only way we can predict the future is by gaining the positions of power and influence to shape things to come”. If learning disability nurses are to lead and shape their own destiny they must embrace the opportunities that have become available through NHS reform to take up lead roles at all levels, not just in the traditional role of managers but also as clinicians. This may present a challenge to nurses who have traditionally been dependant on both hierarchical structures of management and on senior clinicians (often from other disciplines) for clinical direction.
Learning disability nurses are unique in being the only professional group who are trained exclusively to work with people with learning disabilities. As public servants and members of the nursing profession they are accountable for their own practice; this practice must be based on contemporary and valid evidence, and is governed by the standards of the nursing profession (NMC 2003). With this CV learning disability nurses are well placed to take a lead role in delivering the healthcare agenda for people with learning disabilities.
The government sees good leadership as central to the transformation and
modernisation of healthcare delivery. NHS reforms open up some real opportunities for nursing. The various policy documents from across the United Kingdom (see Table 1) provide a framework for the development and modernisation of services including new ways of working and role redesign. This raft of reform sets the scene for nurses to take on more diverse roles in which they are valued not only for the tasks they can undertake, but for their knowledge and ability to guide and inspire the
practice of others. Learning disability nurses must grasp these opportunities if they are to redefine their status within the health economy, assume and achieve equal status with ‘mainstream’ health colleagues and effectively advocate for the equal status of people with learning disabilities.
Titles, however, do not make leaders. Leadership is not about being an expert in a specific area of clinical practice, or having lots of academic or professional
group or population. Whilst it is absolutely essential that nurse leaders are good at their jobs, these achievements alone do not equip people to lead others. Good leaders are those who possess and develop a range of personal qualities that enable them to influence and inspire others. Leaders are passionate, committed, and liberating. They demonstrate recognisable characteristics such as the ability to mobilise or influence the actions of others. They are empowering and demand high standards of themselves and others. Faugier (2004) states “there are lots of nurses out there who are leaders but don’t see themselves as such. We need to convince them so that they can play a much greater role”.
Poor clinical leadership leads to poor standards of care (DoH 1999). Thus to deliver the healthcare agenda for people with learning disabilities, learning disability nurses must develop a broad spectrum of competencies capacities and capabilities to enable them to take up leadership roles at all levels. As well as the development of skills and knowledge needed to undertake increasingly independent and autonomous nursing roles they must take responsibility for developing their own leadership qualities.
6.4.1 Growing the leaders of tomorrow
Leadership potential needs to be nurtured through the recognition of potential leaders in the field of learning disability nursing and positive opportunities created for their growth and development. Succession planning is also required in order to ensure consistent, sustainable high quality care and support for people with learning
disabilities and their families and carers. This requires effective workforce planning in order to ensure that leadership skills and leadership development are integral to the role of learning disabilities nurses and that they are both prepared and supported to take on leadership roles. Today’s leaders and managers must nurture the leaders of tomorrow and establish a culture in which they can grow and “gain the positions of power and influence to shape things to come” (Faugier 2004)
7. Taking Forward the Vision
For the vision set out in this document to be realised a number of important elements need to be in place. This section will, therefore, explore change management, influencing policy, workforce issues and career pathways.
7.1 Change management
Changes in services for people with learning disabilities have created both challenges and opportunities. Some learning disability nurses have experienced isolation whilst others have benefited from greater autonomy and an opportunity to practice in a flexible and creative way. As change within services continues there is a need for learning disability nursing to develop with learning disability nurses leading (and not simply responding to) change.
The practice examples set out in this document demonstrate some of the ways that learning disability nurses, working in a range of settings, have taken a leading role in the development of new and innovative services. However, such developments have not taken place everywhere and if the vision set out in this document is to be realised
then it is evident that further change will be required. Learning disability nurses thus need to act as change agents.
To be effective as change agents learning disability nurses need to be:
Politically aware - Learning disability nurses should be aware that they practice in a political climate incorporating national, organisational and local agendas. As such they need to be aware of policy development (see 7.2) and their contribution to wider issues such as public health (Section 6.1.3).
Exercising influence - Just being political is insufficient and is rendered useless if the learning disability nurse does not have the skills and knowledge to engage in, and influence the debate. In order to be influential the learning disability nurse must know who and what they need to influence, how they can achieve this, and target issues and individuals selectively.
Adept at networking - A strength of learning disability nursing lies in its ability to work in partnership with others and the value of networks and networking at a variety of levels cannot be underestimated. Key networks such as the National Network for Learning Disability Nursing provide a fora for exchange of views and developments as well as identifying possibilities for joint working.
Thinking and acting strategically - Learning disability nurses need to ensure that key issues are addressed at the strategic level. This requires possession of the skills, credibility and confidence to influence policy development, as well as the ability to ‘horizon scan’ in order to ensure that the key issues are both identified and addressed. It is important that strategic thinking is translated into day to day practice by all nurses.
For learning disability nursing to be valued by people with learning disabilities and to ensure that the health needs of people with learning disabilities are both recognised and addressed, these skills must be nurtured and nourished. Education has an important role to play in equipping future learning disability nurses and the profession as a whole must embrace the challenges and opportunities that lie ahead.
7.2 Influencing policy
Historically there has been a perception that nursing has had little in the way of influence upon health policy development (Antrobus and Kitson, 1999). However nurses increasingly want and need to become involved in this process(Aroskar et al, 2004). There is recognition that the impact of health policy on nursing can be immense and nurses are becoming proactive in influencing this process. Health policy development can be broken down into four distinct components:
policy process
policy reform
policy environment
(International Council of Nurses, 2001).
As core members of the nursing profession, learning disability nurses can influence and contribute to the policy process at the formulation, implementation and evaluation stages (International Council of Nurses, 2001; Lee et al, 2002; Scottish Executive, 2002b). Providing a learning disability nursing response (both individually and collectively) to Government consultations is a way in which nurses at all levels can be involved in this in practice.
To ensure credibility within the policy environment, learning disability nurses need to publish and disseminate their good and effective practice to a wider audience. Channelling this work through larger organisations that share similar agendas is one-way nurses can progress their issues (International Council of Nurses, 2001).
Policy makers are one of the major stakeholders in the policy environment. Learning disability nurses must aim to be part of and influence this group and provide evidence of the contribution they make in relation to helping to meet the explicit aims of the government of the day. Nurses need to take advantage of fora, organisations and other arenas such as the Royal College of Nursing, the Scottish Parliamentary Forum and National Networks to gain access to policy makers in order to articulate the needs of people with learning disability and the scope of the nursing contribution to improving care.
7.3 Workforce issues
If the vision set out in this document is to be realised then commissioners and providers of services will need to address a number of workforce issues in order to ensure that people with learning disabilities get the most out of their experiences of healthcare provision and that learning disability nurses are able to develop exciting new roles.
Health and social care providers will require appropriate numbers of learning
disability nurses with the right competencies, right experiences, right skills, and in the right locations to deliver high quality care. However, the total number of learning disability nurses is not in itself a guide to quality and efficiency. Much will depend on
Practice Example:
Following a series of situations which arose regarding the complex issues involved in ‘Consent to Treatment’ that came to the attention of a Trust’s Director of Nursing a Learning Disability nurse was supported to complete a Masters Degree and has now taken responsibility for policy, implementation and advice in relation to this area.
As a result of this nurse’s work people in the PCT have a fuller understanding of the issues for all adults who may lack capacity to give consent, and are now more able to make clinical decisions in accordance with the law and good practice guidance.
the way such nurses are educated, utilised, supported and developed as a skilled resource.
Quality services require effective use of the nursing workforce and, in many
circumstances, the pursuit of quality will bring further changes and extensions to what have been seen as traditional learning disability nursing roles and the breaking down of professional barriers.
Workforce planners need to take account of the vision outlined in this document when identifying local nursing requirements, ensuring there are knowledgeable, skilled, and competent nurses available to meet the needs of people with learning disabilities. Whilst the role of learning disability nurses has evolved, and continues to change, there is no evidence to suggest that such posts are no longer required. Sufficient training places should continue to be commissioned recognising that a significant number of nurses move to work with people with learning disability outside the NHS. Commissioning sufficient training places is only one part of the jigsaw. Difficulties have been experienced in some areas in recruiting sufficient students to the learning disability branch and hence there is the danger that there will be insufficient learning disability trained nurses to enable services to develop. Attention thus needs to be given to student nurse recruitment and retention issues. The development of clear career pathways is one way to support this process.
7.4 Career pathways
Learning disability nurses fill a diversity of roles and work in a wide range of settings. In order to attract and retain a workforce who possess the necessary qualities to respond to current and future challenges, it is essential that there are clear career pathways which offer opportunities for development and progression.
Career progression is usually determined by the level of responsibility and the level of authority which a post requires. However, it also needs to be recognised that for some people career progression can also mean moving to work in a similar post in a
different sector or in another post at a similar level but in a different area of specialism.
Practice Example:
After leaving school with 1 ‘O’ Level one member of the UK Learning Disability Consultant Nurse Network started her nursing career at the age of 16 years as a cadet nurse in a large ‘Mental Handicap’ Hospital. After completing her learning disability nurse training, working (very hard) in various posts in the hospital and community teams, and regaining a taste for education she is now one of the small, but ever increasing, number of Consultant Nurses in Learning Disability.
She says “Modern nursing roles provide a previously un paralleled opportunity to raise the profile of learning disability nursing and make a difference for people with learning disabilities. Nurses make a major contribution to the welfare of people with learning disabilities and must take advantage of the opportunities open to them to raise awareness and increase the impact of this contribution”
