The national review of the contribution of all
nurses and midwives to the care and
support of people with learning disabilities
National Nursing Review Summary
The National Review has been undertaken to take account of and reflect the important changes and developments that are impacting significantly upon the lives of people with learning disabilities and their families. It is set within the current context of the need to promote and enable social inclusion and address fundamental health inequalities.
People with learning disabilities frequently have complex health, social and education needs that require high levels of support. Failure to recognise and meet their needs often leads to their exclusion from services and facilities; it may also prevent them from gaining access to many recreational, educational and occupational opportunities, reinforcing their social isolation.
People with learning disabilities have health needs like the rest of the population. Some also have health needs as a result of their learning disabilities, while others have additional complex needs that may require specific interventions and support from specialist staff, including nurses. For a small but significant number of people with very complex needs, area and region-wide specialist services are necessary.
As the largest group of care providers in NHSScotland, nurses and midwives have a vital role in ensuring that people with learning disabilities have their health needs met and gain access to services.
All nurses and midwives - not just those who have chosen to specialise in caring for people with learning disabilities - have an important contribution to make, working in partnership with people with learning disabilities and their family carers across health, social and education systems and within the Joint Future context.
The contributions of Nurses and Midwives
The Review found many examples of practice developments involving nurses and midwives working in partnerships with nursing colleagues from specialist learning disability teams, primary care and acute care settings.
Much of the work, however, has been developed locally on an ad hoc basis and is not co-ordinated in a way that encourages sharing and wider implementation. In addition, significant deficiencies in current knowledge, practice and service provision were also identified.
Expectations of what can be delivered by nurses who are not specifically trained in the care of people with learning disabilities must be realistic. They have received no significant education on the health needs of people with learning disabilities, and tend to have little clinical experience in assessing, identifying and meeting their health needs.
It is nevertheless reasonable to expect that all nurses should have knowledge of where to access specialist nursing support, and that all nurses are able to demonstrate appropriate attitudes when caring for people with learning disabilities. Education programmes for all nursing students must reflect a positive value base, and the group of students who elect to specialise in caring and supporting people with learning disabilities must be seen as a valuable resource who are appropriately prepared for the challenges ahead.
Meeting needs through the Tiered model approach
The National Review considered the health needs of all children and adults with learning disabilities in the context of the Tiered Model of care. Five 'Tiers' (0-4) are set out in the model:
Tier 0 - Community, public health and strategic approaches to care
Tier 1 - Primary care and directly accessed health services
Tier 2 - Health services accessed via primary care
Tier 3 - Specialist locality health services
Tier 4 - Specialist area health services.
Community, public health and strategic approaches to care
A significant number of people with learning disabilities have health needs beyond those that can be met by primary care alone. Some require referral to specialist services. Services must recognise this and work in partnership to ensure that the assessment of needs is planned, co-ordinated and managed through the person's life course, in collaboration with people with learning disabilities, their families and care workers.
Families of children born with a learning disability or who fail to reach developmental milestones need additional help and support. Health professionals, particularly nurses, are well placed to contribute to this endeavour and are able to provide information, practical help and emotional support. Some people with learning disabilities may require additional support when becoming parents, and nurses and midwives have an important contribution to make to this.
There are concerns that the health care needs of young people with learning disabilities are not always considered, recognised or met. This is often the case for young people with learning disabilities at the time of transition between children's and adult services. Adult services may have had little experience of young people with learning disabilities, and often feel poorly prepared and equipped to meet their needs, particularly if complex.
The promotion of the health and wellbeing of older people, including those with learning disabilities, is a national priority. NHS Boards and social work departments must ensure that care staff have the appropriate support and training to meet the needs of older people with learning disabilities.
Nurses are often the key point of ongoing support for carers, and are in a position to assess, recognise and support them to sustain their ability to care and to help them plan for the future in partnership with other services.
The capacity of all nurses to contribute to the wider social inclusion and public health agenda affecting people with learning disabilities needs to be developed across Scotland. This is an issue that must be addressed by NHS Boards and by nurses working as part of a wide range of teams, in both specialist and generic roles.
The Key Messages
Many people with learning disabilities have unrecognised and unmet health needs
Services must be organised and delivered locally in response to sound evidence and assessed need
The promotion of good health and wellbeing must be given greater priority at a strategic and local level
Primary care and directly accessed health services
There is a general lack of data and information across Scotland about the range of health needs of people with learning disabilities at practice, LHCC and NHS Board levels.
The majority of general practices function on a largely reactive rather than proactive basis, relying upon people with learning disabilities or their carers to identify problems and actively seek a consultation - which assumes they have the knowledge necessary to recognise changes in health.
It is not possible for health care professionals working in primary care to develop all the skills necessary to work with all patient/client groups. They need support from, and access to, specialists in learning disabilities and other fields. Partnership working and collaboration between primary care and specialist health services is the key.
Preventative health care has not traditionally been a high priority area in learning disabilities services. This must change as the focus of health care shifts towards health promotion and disease prevention. Health professionals, including nurses, need to pay particular attention to preventative health care for people with complex needs. They must also ensure that the special needs of people with learning disabilities are considered within health promotion programmes.
The Key Messages
All people with learning disabilities should be enabled and supported appropriately to access primary care-based health services
Improving the health of people with learning disabilities by health assessment, health education and health promotion must be a priority
Planning and practice must be needs based
Good health enables social inclusion
Health services accessed through primary care
Some people with learning disabilities have additional health needs that are specifically associated with the underlying cause of their learning disabilities and differ according to the individual syndrome or genetic condition. Knowledge of these associations is important, both to prevent problems occurring and to improve detection of health needs at an early stage to enable appropriate treatments and management to be started.
As a result of the increased presence of these conditions, people with learning disabilities will often require investigation and treatment across a range of primary and secondary care health services. Many health professionals in primary and secondary care settings have limited experience and knowledge of these important issues. As a result, some people with learning disabilities have received inadequate care.
Children's and learning disability nurses should develop their roles to ensure that people with learning disabilities are supported appropriately to have their everyday health needs assessed and met, in collaboration with primary and secondary care colleagues.
The Key Messages
Many people with learning disabilities have greater health needs than the general population
The assessment and treatment of health needs can be complex, requiring access to specialist skills
Partnership working needs to be developed with primary and secondary care and specialists in learning disabilities to support assessments of health needs, provide advice and co-ordinate care
Locality health services
People with learning disabilities who have complex needs will often require additional services and support to those available from mainstream services, including primary and secondary health care.
The health care needs of people with profound and multiple learning disabilities are high and their vulnerability to illness and mortality well recognised. The co-existence of multiple health needs impacts on the ability of generic services in primary and secondary care to effectively assess, identify and meet the range of needs. Specialist assessment, interventions, co-ordination, monitoring and support for primary and secondary care health services are essential.
People with learning disabilities across all age groups are more at risk of developing mental ill-health than the general population. Particular skills are required to recognise and treat mental ill health in the learning disability population.
Children with learning disabilities may display challenging behaviour that they will not 'grow out' of, emphasising the need for early intervention.
A range of nurses - public health, children's and learning disability - have a role to play in supporting families of children with autistic spectrum disorders and other services from diagnosis through to specific therapy and the provision of essential support.
A small significant numbers of people with learning disabilities commit offences are at high risk of
re-offending. Specialist support, assessment and treatment need to be available.
The needs of older people with learning disabilities should not be viewed as being distinct from those of other older people. There should be links between old age health services and specialist learning disability teams to enable joint assessment and treatment of older people with learning disabilities where appropriate.
Specialist nurses have important roles to play in assessing dementia in people with learning disabilities, optimising health, monitoring treatments and providing interventions.
Nurses provide education and support for people with learning disabilities, their families and carers. They use their knowledge of health and social care systems to liaise and co-ordinate care for those with the most challenging and complex needs. As complex needs tend to be addressed on an ongoing rather than occasional or episodic basis, specialist nursing interventions may need to be provided within people's normal daily environments. They understand that health problems in people with the most complex needs can result in them being excluded from access to the services and opportunities available to others. The knowledge, skills and experience of nurses, working as part of specialist teams in assessing and planning care, in delivering treatments and health interventions, enable them to improve health and consequently support social inclusion.
Nurses are in a key position to provide advice and support to family carers. Their health knowledge, assessment skills and clinical experience can be helpful in identifying situations where additional support is necessary. Nurses are also in a position to advise on welfare benefits, make referrals to other agencies and arrange for formal Carers Assessments to be undertaken by the Social Work Department.
The Key Messages
Specialist services, including health, must be in place for people with complex needs
Specialist health services have a vital role to play in working with those who have the most complex needs
Nurses should be core members of specialist teams
People with learning disabilities, their families and carers need practical care, advice and support when caring for those with complex needs
Specialist area and region health services
The Same as You? recognises that for many with the most complex health needs, the need for care will be life long. The range of services necessary to effectively support people with the most complex needs will be highly specialised and be provided on an area wide or regional basis. A variety of models are in place and new ones need to be developed that will meets needs in the future. Area and regional highly specialised assessment and treatment units, in-reach and out-reach teams are being developed to ensure that services and support are available for those with the most complex needs. For a small number, this will need to be in secure accommodation.
For those with profound and multiple learning disabilities, this might mean complex packages of care provided within the home and day care or employment settings, and identifying and including those with the relevant skills and knowledge to assess and provide care.
Carers and professionals highlighted to the Review the difficulties in obtaining assessment and treatment for children in the areas of mental health and challenging behaviour. This is not such a major issue in adult services where appropriate specialist units and teams are available. It is now recognised that the issue of children's services requires urgent attention.
People with learning disabilities with the most complex needs require appropriate, tailored services for them and their families. Recommendations arising from the National Review aim to strengthen the links between primary and secondary care services and specialist Learning Disability Teams and should enable these services to be appropriately provided in the future. This might mean direct nursing care being provided by appropriately qualified nurses, or health care support workers providing care under their supervision.
Children's and Learning Disability Nurses are well placed to provide these services, and have the skills to develop their role in care management within the Joint Future context. Their knowledge and experience of working with people with the most challenging and complex needs will be invaluable.
Nurses have flexible skills that can be used in a range of settings where people with learning disabilities who have complex needs receive care. The portability of their skills allows for and supports models of care that effectively utilise the nursing resource. A number of jointly commissioned services between health and local authorities exist and could be developed in other areas. In the area of treatment, The Same as You? recognises the need to ensure that appropriate therapies and interventions, such as Cognitive Behaviour Therapy, are available. With higher level education, nurses are well placed to provide such therapies. Post registration education opportunities need to be enhanced to support this.
The Key Messages
Specialist services need to be in place on an area or region-wide basis for a small, but significant, number of people with learning disabilities
Nurses have skills that should be utilised in different settings to support people with learning disabilities in the least restrictive way
The education of all nurses and midwives
Nurses, other professionals, service-users, families and carers have highlighted an urgent need to improve and develop the understanding of all nurses and midwives on the needs of people with learning disabilities.
Quality services require effective use of the nursing workforce and, in many circumstances, the pursuit of quality will bring changes and extensions to traditional nursing roles and the breaking down of professional barriers. As part of the drive to ensure the availability of a skilled workforce, Workforce Development Centres are to be established by the Scottish Executive. The Workforce Development Centres will assume responsibility for planning to ensure that recruitment reflects local need. Planning the nursing and midwifery workforce, including student nurses, will be an important aspect of their role.
A number of options in relation to the shape of the
pre-registration learning disability programme have been identified and considered as part of the National Review. By developing a range of options for Scotland, nurses working with people with learning disabilities can lead the way and help identify possible models that could have relevance to other branches of nursing.
Until decisions on the model of nurse education to be used across the United Kingdom in the light of Fitness for Practice and Purpose are made by the Nursing and Midwifery Council, it will be necessary to develop a sustainable learning disability nursing branch programme across Scotland. Recruitment to the Learning Disabilities Nursing branch programme could be improved by developing a delivery model that promotes open learning from learning centres based within Higher Education Institutions across Scotland.
People with learning disabilities can be employed by Higher Education Institutions as Associate Lecturers and can participate in the delivery of programme material and the assessment of nursing students. They can work alongside lecturers in nursing skills laboratories to provide students with a positive experience, as well as learn and develop a range of nursing skills.
All nurses and midwives, whatever their area or place of practice, should receive education on anti-discrimination, the Right to Care and points of access to specialist services and advice. This needs to be part of their core nurse induction and ongoing practice development programmes.
An enhanced Specialist Practitioner Qualification Framework of learning disabilities courses and qualifications should be developed across Scotland. The framework needs to be delivered using flexible routes that enable nurses from all parts of Scotland to obtain access.
The Key Messages
All nurses, midwives, health care support workers and students need to develop their knowledge about the needs of people with learning disabilities
Models of delivering the branch programme need to be reviewed
Continuing professional development opportunities in complex needs areas must be developed as a priority
Standards and monitoring and research
The contributions of nurses working in Registered Care Homes will impact upon the quality of care people with learning disabilities will receive. Nurses are also important and integral members of teams responsible for the inspection and monitoring of Registered Care Homes, and have the vital role of maintaining and promoting standards and quality.
Links should be developed between primary care and learning disability teams to ensure that the full range of health and nursing needs of people with learning disabilities in care homes are assessed and appropriate care planned. Continuing professional development programmes within Registered Care Homes need to take account of the health needs of people with learning disabilities.
Within Scotland, there is a need to develop the academic workforce to focus their attention on the opportunities to undertake research in the area of learning disabilities. The work of nurses caring for and supporting people with learning disabilities is an area rich for research, and nurses should take a lead in contributing to the development of the body of knowledge. A number of mechanisms support research development and activity in NHSScotland at national and local levels.
The Key Messages
Nurses and midwives have an important part of play in improving quality of care and in monitoring services
Best practice and clinical networks need to be developed to promote nursing practice and improve care
Nurses and midwives should be supported to develop their capacity to participate in research in the area of learning disabilities