Promoting Health, Supporting Inclusion - The national review of the contribution of all nurses and midwives to the care and support of people with learning disabilities

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The national review of the contribution of all
nurses and midwives to the care and
support of people with learning disabilities

appendix 1: The Recommendations

Recommendation 1
The Public Health Institute of Scotland should undertake a Needs Assessment of the health needs of children and adults with learning disabilities in Scotland to inform the development and commissioning of services for the future.

Recommendation 2
NHS Boards and Local Health Care Co-operatives should profile the health needs of children and adults with learning disabilities by working collaboratively with colleagues in Community Child Health, Learning Disability Teams, Primary Care, Public Health and other areas, to inform Partnership in Practice Agreements, Health Plans and joint commissioning.

Recommendation 3
NHS Boards should review the funding and resourcing of health services for people with learning disabilities to ensure that the commissioning and development of services are built on sound evidence of the full range of health needs of children and adults with learning disabilities.

Recommendation 4
All NHS Boards should ensure there are models of health care in place that supports a primary care-based approach to developing services for people with learning disabilities. To support this, NHS Boards should ensure there are Community Learning Disability Nurses based in, and working collaboratively as integrated members of primary care teams. The numbers of specialist nurses required will need to take account of geography and population needs, and every NHS Board should have appropriate arrangements in place across all LHCCs.

Recommendation 5
NHS Boards should ensure that all people with learning disabilities - particularly those with complex needs - have regular assessments of their health needs and plans of care developed as part of their Personal Life Plan. These should be developed in partnership with Primary Care and Specialist Learning Disability Services. Particular attention should be given to the interface between services at transition stages, such as at the time of diagnosis, commencement of education and transfer between child and adult services, to ensure appropriate
co-ordination of health care.

Recommendation 6
The Health Education Board for Scotland and the Scottish Consortium for Learning Disability should work collaboratively with NHS Boards, LHCC's, Public Health Practitioners and Learning Disability Nurses through local and national networks to promote health education and health promotion of people with learning disabilities in public health initiatives.

Recommendation 7
NHS Boards should develop and ensure there is access to a Learning Disability Liaison Nursing service within acute general, paediatric and psychiatric hospitals to support children and adults with learning disabilities and their families and care workers throughout the care journey.

Recommendation 8
NHS Boards should ensure there are specialist health services in place to respond appropriately to people with learning disabilities who have complex health needs. Learning Disability Nurses should contribute to the development and implementation of the Single Shared Assessment for people with learning disabilities, recognising their skills to assess, identify and respond to needs and support mainstream services.

Recommendation 9
All people with learning disability who have complex health care needs, wherever they live, should have a named Children's or Learning Disability Nurse as a member of a specialist team to liaise, co-ordinate and link with all Tiers of health care and other care systems. Integral to this aspect of the role is
co-ordination of care, assessment and planning care, providing therapeutic interventions, advocacy, monitoring health and enabling improvement to promote social inclusion and address health inequalities.

Recommendation 10
People with learning disabilities, their family and care workers require additional support, information, advice and guidance to utilise mainstream services. NHS Boards should ensure there are effective communication and referral pathways between health care professionals, including nurses, working across health and other services to ensure users and cares are involved in the planning and delivery of care.

Recommendation 11
NHS Boards and Local Authorities should ensure that Children's and Learning Disability Nurses are available to plan, co-ordinate care and provide practical 'hands-on' nursing care and support across the full range of setting where children and adults with complex health needs receive care. The need for some may be life long. Nursing support packages should focus on practical home-based support, which may include short breaks and respite for family carers on the basis of assessed need, on a regular basis, for agreed hours during the day and/or overnight. The service should also provide nursing support to families in the event of a crisis such as carer illness to prevent the hospitalisation of the person with complex needs.

Recommendation 12
NHS Boards should ensure that access to specialist multidisciplinary services is available for children and adults with learning disabilities who have the most complex and challenging needs. Children's and Learning Disability Nurses have a distinct contribution to make and must be at the core of specialist teams (such as Paediatric child development centres, Forensic Teams, specialist assessment and treatment units, Mental Health and Challenging Behaviour teams).

Recommendation 13
NHS Boards with their partners should develop models of health care, based on evidence, that meet the needs of children and adults with learning disabilities to avoid unnecessary in-patient episodes. Learning Disability Nurses have transferable skills and where there is clinical need, a mix of nurses from learning disabilities, paediatrics and mental health should be developed across a range of settings where children and adults with the most complex needs access in-patient care, day care, short breaks, education, employment and leisure opportunities.

Recommendation 14
NHS Boards should identify opportunities for the development clinical leaders, including Nurse Consultants in Learning Disabilities, to develop champions that promote evidence based practice, as outlined in Facing the Future.

Recommendation 15
The Regional Workforce Centres should take account of the need to identify the local nursing requirements in light of the recommendations of the National Nursing Review, to ensure there are skilled nurses available to meet the needs of people with learning disabilities.

Recommendation 16
The Scottish Executive will invite NHS Education for Scotland in collaboration with the Scottish Consortium for Learning Disability and other key stakeholders to establish a multiagency working group to develop core material to address the needs of people with learning disabilities for incorporation within the pre-registration nursing Common Foundation Programme. These developments should incorporate the development of a network of people with learning disabilities s and family carers to act as trainers and educators within nurse education programmes.

Recommendation 17
The Scottish Executive will invite NHS Education for Scotland to review immediately the existing pre-registration Children's and Learning Disability branch programmes in light of the recommendations of the National Nursing Review, to ensure that nurses in training are fit for practice.

Recommendation 18
The Scottish Executive will review the contractual arrangements and consult with provider universities to determine the most effective model of delivery of the Learning Disability Nursing branch programme that enables a Scotland-wide focus to meet local workforce needs. The Chief Nursing Officer will establish a working group of key stakeholders to take this forward immediately.

Recommendation 19
Directors of Nursing should utilise the knowledge and skills of Learning Disability Nurses to ensure that an awareness of learning disabilities is included in all nurse induction and continuing development programmes.

Recommendation 20
The Scottish Executive will invite NHS Education for Scotland to enhance and develop the Specialist Practitioner Qualification framework available for all nurses in the area of complex health needs of children and adults with learning disabilities.

Recommendation 21
The monitoring of standards and care undertaken by the Scottish Health Advisory Service within the Quality and Standards Board of Scotland should take account of the outcomes of this National Nursing Review to enhance and improve care in the future.

Recommendation 22
The Nursing and Midwifery Practice Development Unit will support nurses to develop an awareness of integrated health care pathways and identify the range of nursing contributions required to improve health and wellbeing.

Recommendation 23
The Nursing and Midwifery Practice Development Unit will work with nurses and midwives across Scotland to develop a network for and database of best practice of nurses working in the area of Learning Disability.

Recommendation 24
The Nursing and Midwifery Practice Development Unit will in collaboration with Directors of Nursing support the development and co-ordination of Trust-wide audits to identify the practice development, training needs and career pathways of all groups of nurses and inform workforce planning.

appendix 2: Reference Groups and Subgroup

The Chief Nursing Officer established two Reference Groups (one of professionals, the other of service-users, family carers and carers organisations) to inform and guide the National Nursing Review process. They included representatives from user and carer organisations, academic and education sectors, health and social care professions, professional nursing organisations and trades unions. The Groups adopted a strategic position and provided guidance and direction to the Review.

Professional Reference Group

Members

Organisation

Ms Anne Jarvie [Chair]

Chief Nursing Officer, Scottish Executive Health Department

Ms Alison Aitken

Nursing Director, Borders Health Board

Ms June Andrews

Director of Nursing, Forth Valley Acute NHS Trust

Mr Michael Brown

National Nursing Review Project Manager, Scottish Executive Health Department

Mrs Mary Boyle

Professional Officer, NHS Education for Scotland

Ms Jane Campbell

UNISON

Mr Martin Campbell

Tutor in Learning Disability, University of St Andrews

Dr Sally Cheseldine

Consultant Clinical Psychologist, Royal Hospital for Sick Children, Edinburgh

Professor Sally Ann Cooper

Department of Psychological Medicine, Academic Centre, University of Glasgow

Ms Pauline Craig

Project Manager, Public Health Institute

Ms Lisa Curtice

Director, Scottish Consortium for Learning Disability

Ms Kay Eastwood

Director of Nursing, Lomond & Argyll Primary Care NHS Trust

Dr Andrew Fraser

Deputy Chief Medical Officer, Scottish Executive Health Department

Professor Colin Espie

Department of Psychological Medicine, Academic Centre, University of Glasgow

Mrs Anne Haddow

Parent, Profound and Multiple Impairment Service (PAMIS)

Ms Annie Hair

MSF

Professor James Hogg

Director, White Top Research Centre, University of Dundee

Dr Martyn Jones

Senior Lecturer, School of Nursing & Midwifery, University of Dundee

Mr Alex Joyce

UNISON

Mr Ian Kerr

Social Work Services Inspectorate, Scottish Executive

Ms Juliet MacArthur

Senior Nurse - Research, Lothian University Hospitals NHS Trust

Ms Kim Milledge

MSF

Ms Eileen Moir

Director of Nursing, Borders Primary Care NHS Trust

Mr Joe Nichols

Nursing and Midwifery Council

Ms Ann Paul

Royal College of Nursing

Mr Colin Poolman

Professional Officer, Royal College of Nursing

Mr Michael Proctor

Nursing Officer [Primary Care Division], Scottish Executive Health Department

Ms Lindsay Reid

Royal College of Midwives

Mr Pete Ritchie

Director, Scottish Human Services Trust

Ms Jessie Roberts

Co-ordinator, Profound and Multiple Impairment Service (PAMIS), University of Dundee

Dr Pauline Robertson

Consultant Psychiatrist, Lothian Primary Care NHS Trust

Mr Robert Samuel

Nursing Officer, Scottish Executive Health Department

Mr Tommy Starrs

Head of Department, School of Nursing & Midwifery, University of Stirling

Mr Thomas Stevenson

Professional Nurse Advisor, Ayshire & Arran Primary Care NHS Trust

Dr Margaret Whoriskey

Advisor Disability Services, Scottish Health Advisory Service

User and Carer Reference Group

Mr Robert Samuel (Chair)

Nursing Office

Ms Sylvia Allerdyce

Partners in Advocacy

Mrs Karen Bain

ENABLE

Mr Michael Brown

Project Manager, Scottish Executive Health Department

Mr Bill Gibson

People First

Mrs Anne Haddow

PAMIS

Ms Monica Hunter

People First

Mr Jodie Sloan Murphy

Partners in Advocacy

Mrs Ena Murray

National Carers Association

Mrs Pam Spence

Scottish Society for Autism

Ms Julia Pennicuik

ENABLE

Ms Jessie Roberts

PAMIS

Mrs Doreen Walkinshaw

ENABLE

Mr John Wallace

Shared Care Scotland

Mr Douglas White

ENABLE

Presentations were given to the Reference Groups from experts in the field of learning disabilities, including:

  • Professor Sally Ann Cooper, Department of Psychological Medicine, Academic Centre, University of Glasgow

  • Mrs Mary Boyle, Professional Officer, NHS Education for Scotland

  • Mr Mark Feinmann, Joint General Manager, Learning Disability Service, Glasgow

  • Mrs Linda Allan, Lead Nurse, and Team members, The Glasgow Primary Care Liaison Team, Glasgow

  • Mrs Juliet MacArthur, Senior Nurse-Research, Lothian Acute Hospital Project, Western General Hospital, Edinburgh

Complex Health Needs Subgroup

The Chief Nursing Officer established a group to focus on the health needs of children and adults with learning disabilities. The group consisted of carers, academics and practitioners from the field of learning disabilities.

The Complex Health Needs Group explored relevant research evidence and practice to identify health needs of children and adults with learning disabilities. They adopted a tiered model approach to considering:

  • strategic and public health needs

  • everyday health needs

  • health needs resulting from the learning disability

  • complex health needs.

From this, they were able to make recommendations to the National Nursing Review on the developments and changes needed to help nurses and midwives to contribute effectively to meeting the care needs of children and adults with learning disabilities.

Members

Organisation

Dr Margaret Whoriskey

Adviser Disability Services

Committee Chair

Scottish Health Advisory Service

Professor Sally Ann Cooper

Professor of Learning Disabilities

Department of Psychological Medicine, Academic Centre, University of Glasgow

Dr Sally Cheseldine

Consultant Clinical Psychologist

Royal Hospital for Sick Children, Edinburgh

Mrs Ann Haddow

Parent, PAMIS

Mrs Jessie Roberts

Co-ordinator, PAMIS, University of Dundee

Robert Samuel

Nursing Officer, Scottish Executive Health Department

Michael Brown

Project Manager, Scottish Executive Health Department

appendix 3: The Review process

Context

The commitment to carry out a Review of the contribution all nurses and midwives make to the care and support of people with learning disabilities was made in Caring for Scotland - The Strategy for Nursing and Midwifery in Scotland (2001). This built on the work carried out in The Same as You? A review of services for people with learning disabilities, published a year earlier. The National Nursing Review commenced in June 2001.

Legislative framework

Health care legislation in Scotland is not developed in isolation. The Review took account of the legislative and policy direction in Scotland, but also recognised the importance of wider UK and international developments and recommendations.

At international level, the United Nations' Convention on the Rights of the Child (1991), the World Health Organisation's Health 21 Initiative (WHO, 1999) and the European Convention on Human Rights impact upon the development and direction of services in Scotland and the UK. European, UK and Scottish legislation relating to health and safety, employment and community care is all relevant.

However, there are specific pieces of legislation that have direct relevance to the care and support of children and adults with learning disabilities in Scotland. These were closely scrutinised in the Review, and included:

  • The Mental Health (Scotland) Act (1984) * 64

  • The Children's (Scotland) Act (1995)

  • The Disability Discrimination Act (1995)

  • The Criminal Procedures Act (Scotland) (1995)

  • The Carers (Recognition & Services) Act (1995)

  • The Adults with Incapacity (Scotland) Act (2000)

  • Vulnerable Adults Bill (2002) *

Relevant legislation is summarised in Appendix 3.

Policy context

A wide range of policies from departments of the Scottish Executive and UK Government and beyond were reviewed, including:

  • Designed to Care (1997)

  • The Framework for Mental Health Services (1997)

  • The Acute Services Review (1998)

  • Towards a Healthier Scotland (1999)

  • Learning Together (1999)

  • Report into the education of children with severe low incidence disabilities (1999)

  • Aiming for Excellence (1999)

  • Social Inclusion - Opening the door to a better Scotland (1999)

  • Our National Health - A plan for action, a plan for change (2000)

  • The Same as You? (2000)

  • Protecting Children - A shared responsibility (2000)

  • Community Care: A Joint Future (2000)

  • For Scotland's Children (2001)

  • Caring for Scotland (2001)

  • Nursing for Health (2001)

  • Patient focus and public involvement (2001)

  • Fair for all (2001)

  • Framework for Maternity Services (2001)

  • Access to primary care services in Scotland (2001)

  • Making the connections - Report from the Primary Care Modernisation Group (2002)

  • Adding life to years - Report of the expert group on healthcare of older people (2002)

Appendix 4 offers brief outlines of these policies.

Review of nursing and midwifery practice in Scotland

The wide range of contributions currently made by all nurses and midwives throughout the lives of children and adults with learning disabilities were considered. Nurses, midwives, social workers, therapists, doctors, clinical psychologists, service-users, family carers, care workers and many others from all areas of Scotland were asked to provide a picture of the nursing contributions.

The process of reviewing nursing and midwifery practice included:

  • encouraging wide involvement to create a sense of ownership of the National Nursing Review at local level

  • holding local area focus groups throughout Scotland ( Appendix 6)

  • identifying best nursing and midwifery practice for people with learning disabilities

  • identifying innovations and developments in nursing and midwifery practice to inform the National Nursing Review recommendations.

Nursing literature review

The Scottish Executive Library Service undertook a review of the literature on the range of contributions of nurses and midwives. While not exhaustive, a wide range of sources written by authors from a variety of different professional backgrounds was identified. Appendix 6 outlines the themes identified in the review.

Commissioned research

The Scottish Executive commissioned a report from Monash University, Melbourne, Australia, to identify key policy changes implemented in the State of Victoria in relation to health, and specifically the nursing contributions to the care and support of people with learning disabilities. A summary of the report can be found in Appendix 7.

Consensus Conference

The Chief Nursing Officer hosted a National Nursing Review Consensus Conference on 31 January 2002 at the James Watt Conference Centre, Heriot Watt University, Edinburgh. Delegates from all areas of Scotland attended, with participants including users, family carers, nurses, midwives, social workers, academics, doctors and many others. A series of workshops was held as part of the conference.

appendix 4: Legislation relating to people with learning disabilities

Mental Health (Scotland) Act (1984) People with learning disabilities are included in current mental health legislation, but it is recognised that there is a need for a thorough review of the appropriateness of including people with learning disabilities within mental health law. This will be considered in due course.

It is important that all nurses, whatever their areas of clinical practice, have a general awareness of the mental health legislation and its relevance to people with learning disabilities. Learning Disability and Mental Health Nurses have particular responsibilities and roles in relation to nurse holding powers. Nurses with specialist knowledge and expertise in learning disabilities will contribute to the assessment of people with learning disabilities, in collaboration with mental health colleagues, and will be consulted about detention and the implications of the Mental Health Act.

The United Nations Convention on the Rights of the Child (1991) sets out the principles to be taken into account in any legislation, policy and practice which impacts on children. The key principles focus on:

  • the best interest of the child

  • respect for the child's privacy

  • the need to listen to the child's views

  • enabling children to enjoy the highest standard of health

  • ensuring access to treatment

  • the provision of special care for the disabled child

  • protection against neglect, treatment and abuse

  • a child's right to play and recreation.

The Children's (Scotland) Act (1995) sets out parental rights and responsibilities in relation to children. The powers and duties of public authorities to support children and their families is laid out, with indications on when to intervene when the welfare of a child demands. The Act is in four main parts and includes issues such as parental rights and responsibilities, the promotion of children's welfare by public authorities and amended adoption laws.

Carers (Recognition & Services) Act (1995) sets out the right to an assessment of the ability of a carer to care, where they care for a substantial amount of time on a regular basis, and when the person they care for is being assessed or reassessed.

The importance of the role played by carers is well recognised and is high on the agenda of Government in Scotland. In 1999, the Scottish Executive set up a Carer's Legislation Working Group to draw up legislative proposals for public consultation.

The Disability Discrimination Act (1995) and associated guidance describes responsibilities for services, including the requirement to provide fully accessible buildings and information to people. All staff will need to be aware of and comply with the legislation and organisations will be responsible for providing disability awareness and equality training.

The Criminal Procedures (Scotland) Act (1995) is relevant in relation to the small number of people with learning disabilities who engage in offending behaviour. Nurses with specialist knowledge and expertise in learning disabilities will contribute to the assessment and treatment of people with learning disabilities who may be subject to the Criminal Procedures Act; they therefore need an understanding of the legislation.

The Human Rights Act (2000) provides an overarching framework around the rights of individuals and sets out how they can exercise these rights. This is of particular relevance to people with learning disabilities, given their experience over many years.

The Adults with Incapacity (Scotland) Act (2000) provides for decisions to be made on behalf of adults who lack the capacity to act for themselves and will apply to many (but not all) adults with learning disabilities. The decisions concerned may be about the individual's property or financial affairs, or about their personal welfare, including medical treatment. It will be important that personal care plans include statements about the individual's capacity to make such decisions. For example, if an individual is assessed as having the requisite capacity to decide about financial issues or medical treatment, their wishes cannot be over-ruled on the grounds that it is 'in their best interests'.

Changes in legislation through the Community Care and Health (Scotland) Bill came into effect on 1 April 2002.

appendix 5: Policy documents relating to people with learning disabilities

Designed to Care (1997) raised awareness of the need for patient and public involvement in health services in Scotland. Clinical Governance was introduced to improve quality and service delivery, with social justice and equity of care being seen as central to health care. Designed to Care recommended the setting up of the Nursing and Midwifery Practice Development Unit (NMPDU) to complement the work of the Nursing Research Initiative for Scotland (NRIS).

The Framework for Mental Health Services (1997) sought to bring about collaborative working among health, social work and housing departments to develop integrated mental health services. The need to work with users, carers and voluntary agencies was recommended.

The Acute Services Review (1998) presented the framework for acute services in Scotland and brought about the introduction of the Clinical Standards Board for Scotland (CSBS) and managed clinical networks.

Towards a Healthier Scotland (1999) signalled the need to promote health and prevent illness in Scotland and the importance of addressing issues such as smoking, improving diet and increasing activity levels.

Learning Together (1999) focused on the importance of ongoing professional education and a culture of lifelong learning to ensure that health professionals are prepared to meet the needs of patients. Working and learning together and in partnership is seen as the key to delivering a modern, high quality, responsive health service.

Report into the education of children with severe low incidence disabilities (1999) reviewed special educational needs provision in Scotland for children with severe low incidence disabilities. The report attaches great importance to the need for good working practices between all agencies concerned in delivery of services for children with severe low incidence disabilities, including health services.

Aiming for Excellence (1999) set out proposals for the establishment of the Scottish Commission for the Regulation of Care to regulate care services, and a Scottish Social Services Council to regulate the social services workforce. This has led to the development and implementation of standards with independent inspection.

Social Inclusion: Opening the door to a better Scotland (1999) sets out the programme to promote social inclusion in Scotland. It is intended to inform practitioners who are engaged in promoting social inclusion at a local level and for policy implementers at a national level.

Nursing for Health (2000) was a recommendation arising from Towards a Healthier Scotland and examines the public health contribution of nurses, midwives and health visitors to improving the public's health. Specific reference is made to specialist learning disability nurses and emphasis is placed on the need to develop and improve links and services for people with learning disabilities and those with complex needs.

Our National Health: A plan for action, a plan for change (2000) is the key government strategy which signals the importance of improving patients' experiences within health services, increasing their involvement in decisions about their care and encouraging team working among staff. All these strategies have an impact upon nurses and midwives and underline the need to ensure that all nurses and midwives focus their efforts on improving the public's health.

Health is not merely the absence of illness or disease; it also embraces physical, mental and spiritual wellbeing. The wider health contribution in relation to people with learning disabilities is to enable them to live their lives fully and be included in society. From a nursing perspective, there needs to be full recognition that all nurses and midwives have an important contribution to make in improving public health in the widest sense. This contribution cannot be considered in isolation and needs to be considered alongside those of doctors, teachers, social workers, health promotion workers, carers, volunteers and many others.

A framework for Maternity Services in Scotland (2001) promotes a modern community-based maternity service and considers policy development and planning based on populations and their needs. The framework recognises the special needs of people with learning disabilities and the importance of developing links with specialist learning disabilities services.

Access to primary care services in Scotland (2001) was the result of the Scottish Executive commissioning the Scottish Consumer Council to look at the experience of the Scottish population using primary care services and the impact on their health and well being. Access to health services is seen as the key issue and factors that can prohibit this were identified. Ways of improving primary care services are recommended in the report.

Patient focus and public involvement (2001) outlines the commitment to involving people more in decision making about their care and in influencing future service provision. The aim is to improve patients' experiences within health services and ensure that people are treated with respect as individuals, regardless of race, class and culture.

Fair for all (2001) states that health care should be equitable and accessible to all and that services design must reflect diversity and are able to respond and meet the needs of multiracial and multicultural society. The intention is to impact on accessible information, communication and understanding of needs, awareness of specific dietary requirements and overall uptake of services in ethnic minority groups.

Making the connections (2002) focuses specifically on the actions required to improve the health of patients in the primary care setting and highlights the need for an integrated approach to the delivery of multiprofessional and mulitagency services.

Adding life to years (2002) is the report of the Chief Medical Officers expert group on the healthcare of older people and gives a clear multiprofessional commitment to improving the way in which older people can enjoy longer and healthier lives in the community.

appendix 6: Local area focus groups in the National Nursing Review

A series of local area focus groups were hosted throughout Scotland and attended by nurses, midwives and others from all areas of clinical practice. The focus groups showed that in addition to interest from nurses and midwives, there was high levels of support for the Review from clinical psychologists, doctors, allied health professionals, social workers in residential, field and day care settings, voluntary organisation, providers and many others. Local area focus groups were held with student nurses at Napier University, University of Stirling and Glasgow Caledonian.

The focus groups were held in the following areas:

  • Borders

  • Edinburgh

  • Dumfries & Galloway

  • Argyll and Clyde

  • Forth Valley

  • Grampian

  • Lanarkshire

  • Shetland

  • Western Isles

  • Greater Glasgow

  • Ayrshire & Arran

  • Tayside

  • Lomond & Argyll

  • Fife

  • Highland

  • West Lothian

  • Orkney

  • The State Hospital

appendix 7: The Nursing Literature Reviewed

As part of the National Nursing Review process, the Scottish Executive Library service undertook a review of the literature (mainly in nursing journals) to identify some of contributions made by nurses and midwives to the care of people with learning disabilities. While the literature review was not exhaustive, a wide range was identified, much written by nurses or in collaboration with others such as doctors and clinical psychologists.

Nursing literature reviewed

Area of publication

Themes identified from the literature

Public Awareness of Learning Disabilities

Attitudes of professionals poor; role of learning disability specialists vital; further work and research required.

Health Promotion and Health Education

Drop-in clinics could offer a way forward; limited focus on health promotion and prevention; exclusion from health promotion; health screening must be a priority; Community Learning Disability Nurses have a key role to play.

Interface with Specialist Services

Community Learning Disability Teams and Primary Care Teams need to improve their links; Learning Disability Nurses pivotal in promoting collaborative working; Learning Disabilities not seen as a priority for Primary Care; issue of knowledge, training, liaison, role definitions and clinical care responsibilities within Primary Care need to be clarified; Learning Disability and Primary Care Nurses must work together to improve health; what Primary Care Nurses need to do to help people with learning disabilities access health care; Learning Disability Nurses must become key partners with Primary Care Teams in shaping health services; Learning Disability Nurses must develop and shape their role around health needs; need to review the effectiveness of Primary Care consultations for people with learning disabilities; Primary Care Teams can have poor awareness of the health needs of people with learning disabilities due to poor education; attitudes and collaboration with specialist teams.

Clinical Networks

The development of clinical networks to share and develop practice needs to be improved.

Mental Health and Learning Disabilities

National Mental Health Strategies continue to fail to consider the needs of children and adults with learning disabilities; Learning Disability Nurses have an important role in meeting mental health needs; Learning Disability Nurses need to improve their skills in assessment and treatment of dual diagnosis; the closure of long-stay hospitals means it is important to recognise mental health needs as distinct from social care needs.

Learning Disability Nursing

The diversity of skills and experience of Learning Disability Nurses needs to be recognised and strengthened for the future; Learning Disability Nurses offer an excellent example of holistic care that other nurses can learn from; Learning Disability Nurses, like Health Visitors and Midwives work in a health promotion and well being model of health care; Learning Disability Nurses need to develop their role as client advocates; Learning Disability Nurses can support people with learning disabilities access health care; Learning Disability Nurses have a community focus and can form effective links with Primary Care; Learning Disability Nurses have responded to change over the last 10 years; More education and support is required from nurses to help parents who have a learning disability; research needs to be undertaken to develop a conceptualised framework of the work undertaken by Learning Disability Nurses; a profile of learning disability nurses.

Community Learning Disability Nursing

Work with Primary Care; family carers around health needs of people with learning disabilities suggests locating Community Learning Disability Nurses within Primary Care could be part of the answer; Community Learning Disability Nursing roles need to be developed to meet health needs; an analysis of the core skills required to practice; Degree level education required for all Community Learning Disability Nursing; Community Learning Disability Nurses should have a profile in health promotion within Primary Care; health screening in Northern Ireland.

Palliative Care

Some people with learning disabilities will use palliative care services - the role of District Nurses and their education needs must be identified; what are the professional needs of District Nurses around learning disabilities?

Acute Nursing and General Hospital Care

The experience of people with learning disabilities in general hospitals; users critical of acute hospitals - more research needed; Liaison Nursing in Edinburgh improves the health outcomes for people with learning disabilities in acute hospitals; General Nurses have negative views and poor attitudes than would be expected from caring professionals.

Education of Nurses

Generalist and specialist debate - the need to consider models in relation to all nurses and avoid focusing in isolation; users not involved in developing nurse education programmes; Nurse education programmes need to be improved about health needs of people with learning disabilities.

Sexual Health

Sexual health needs of people with learning disabilities; the nurse's role in sexual health care and education; sex and health promotion; health care for women with learning disabilities; a holistic perspective to human sexuality; is the sexual health of people with learning disabilities being denied; should nurses support people with learning disabilities to have sex?; sexuality and the relevance to learning disability nurses; preventing rape and sexual assault of people with learning disabilities; how far gay? Politics and HIV in learning disabilities; assessing and meeting needs in HIV and learning disabilities; sexual awareness.

appendix 8: Summary of Report commissioned by the Scottish Executive from Monash University, Melbourne, Australia

A report to the Scottish National Review of the Contribution of Nurses to the Care and Support of People with a Learning Disability

Prepared by:
Associate Professor Robert Davis, MBBS, FRACGP, GDEB, Centre for Developmental Disability Health Victoria, Monash University

Ms Alex Phillips, RMRN, B.App.Sci.(Intellectual Disability), B.App.Sci.(Disability) (Hons), Centre for Developmental Disability Health Victoria, Monash University

Dr Karen Nankervis, RMRN, RPN, B.Ed, PhD, Department of Psychology and Disability Studies, RMIT University

About the Report

This report reviews the contribution of disability specialist professionals to the care and support of people with an intellectual disability (learning disabilities). While the report provides information in relation to services across Australia, specific detail has been given to the State of Victoria, which is largely representative of the other States and Territories. The report provides an overview of the characteristics, definition and prevalence of the target group. Also discussed is the evolution of disability services including the progression of staff training and roles.

Main recommendations for Scotland

Staff qualifications and competencies:

It is important to retain a group of "registered professionals" with expertise in the skills required to meet the higher than average health, mental health, challenging behaviour and developmental needs of people with an intellectual disability. They also require the skills associated with supervising and training direct care staff, managing services, planning support services, ensuring community participation, and the promoting of self determination for people with an intellectual disability. If Scotland makes the decision to no longer have Learning Disability Nurses, then a new disability profession should be established to ensure that the gaps in service delivery experienced in Victoria do not occur.

Staff development and career path:

Services need to have a core group of professionals who are able to gain experience and enhance their ability to contribute in the delivery, planning and management of services. There should be a policy that establishes and maintains career pathways to attract and retain staff committed to maintain high professional standards.

Medical services:

The particular health needs of people with an intellectual disability benefit from services geared to deal with this group.

Generic health professionals, i.e. medical practitioners and nurses, will need training and support from services experienced in delivering services to people with an intellectual disability and this needs to be anticipated and planned for. Training in caring for people with disabilities should be a core component of the curricula of courses preparing health professionals. Generic services should also have access to professionals with training and expertise in disability to enhance service delivery.

Multi disciplinary teams:

The complex nature of the medical, psychiatric and behavioural problems often require a multi-disciplinary or interdisciplinary approach. The availability of and increase in the number of "Disability Professionals" with specific training in intellectual disability and some nursing skills would facilitate the effectiveness of these teams.

appendix 9: Examples of services across the Tier

Tier 0

Tier 1

Tier 2

Tier 3

Tier 4

Promotion of general health and well being in the wider community, for example:

  • Social Inclusion projects

  • Healthy eating groups

  • Community Education initiatives

  • Evening classes

  • College courses

General Health Services:

  • General practitioners

  • General Dental Services

  • Optometrists

  • Accident & Emergency Services

  • NHS 24

  • Community Pharmacists

Primary Care based Services, including:

  • Practice nursing

  • District nursing

  • Health Visiting

  • Treatment Room Nursing

  • Community Midwives

  • PAMs e.g., Physiotherapists

Health Services accessed via primary care services, for example:

  • Specialist Primary Care based Epilepsy services

  • Primary Care Liaison service

  • Acute Hospital Liaison Service

  • General psychiatric Services

  • General hospital services - out patient clinics, investigation & treatment units

  • Palliative care services

Specialist Locality health Services, for example:

  • Paediatric Development Assessment services

  • Community Learning Disability Teams

  • Learning Disability Psychiatric domiciliary & Out patient services

  • Specialist epilepsy services

  • Child & Family Psychiatric Services

  • Community Child Health Services

  • Learning Disability Dual Diagnosis clinics

  • Orthotic & equipment clinics

Specialist Area & Regional Health Services, for example:

  • Specialist Learning Disability Assessment & Treatment Services

  • Learning Disability Additional Support Teams

  • Specialist Paediatric Assessment & Treatment services

  • Intensive Psychiatric Units (IPCU)

  • Forensic Assessment & treatment services

  • State Hospital, Carstairs