Health and social care systems across the UK continue to face significant strategic, structural and economic change, with an increased focus on localism and integration, changes in commissioning structures and a strong emphasis on outcomes and transparency. Learning disabilities nursing must adapt to meet the demands of this change.
The UK Modernising Learning Disabilities Nursing Review aims to ensure the best possible services are provided to people with learning disabilities, their families and carers now and in the future and that we have a valued and thriving learning disabilities nursing profession.
Health and social care challenges
The population of people with learning disabilities is increasing across the UK and internationally. Demographic projections suggest that the numbers of people with learning disabilities will increase by 14% between 2001 and 2021 (1), with rises at both ends of the age spectrum linked to better survival rates in premature babies and improvements in health care and general standards of living (2,3).
The number of individuals with complex needs, including co-morbid health problems and behaviours perceived as challenging, is increasing across the UK (4). A third of people with severe and profound learning disabilities also have an associated autism spectrum disorder (5). People with learning disabilities often experience health and social problems associated with ageing earlier than the general population and there is a higher than average incidence of dementia within some groups (6).
There is evidence showing that many physical, sensory and mental health needs of people with learning disabilities go unrecognised and unmet by services, with consequent negative impacts on their quality of life, life chances, life expectancy and experience of services.
These compounding issues can lead to people with learning disabilities being at higher risk of poor physical and mental health and to early mortality. If these issues aren't addressed, all services, be they specialist or general, can expect to experience greater demands from people with learning disabilities, their families and carers in the future (9).
Service modernisation initiatives across the four countries are similar in direction of travel, although they may differ in detail. They all aim to:
- promote independence, social inclusion and citizenship;
- develop a service ideology influenced by the social model of disability and values-based, rights-based, person-centred approaches;
- progress the integrated services agenda;
- promote community-based services; and
- ensure equitable access to health care for people with learning disabilities, their families and carers.
Examples of specific policies across the four countries are cited in Appendix 1.
Learning disabilities nurses remain important in the eyes of stakeholders
In the past, there was some debate about the relevance of learning disabilities nursing in the context of the shift to a social model of provision. Other countries have moved to a workforce with generically prepared registered nurses, or to training more closely aligned to social work or social education. The UK, however, has retained specific preparation towards registration as a Registered Nurse Learning Disabilities for over a century. Some countries are now reconsidering the benefits of having specifically prepared nurses for people with learning disabilities. More recently, there has been recognition that learning disabilities nursing continues to play a crucial role in moving the care of people with learning disabilities from an institutional setting to communities, in championing health improvement and working to tackle the health inequalities experienced by those they work for.
Learning disabilities nursing has a strong values base
Learning disabilities nurses respond to individuals with learning disabilities, their families and carers in a creative, flexible and effective manner, ensuring that interventions are informed by the most recent evidence- and values-based practice. They have a commitment to lifelong learning and promote the empowerment of people with learning disabilities, their families and carers in all aspects of care.
The values base for learning disabilities nursing (see Box 1) is strong and remains the key element underpinning practice. We have built on this base to develop a modernised vision of learning disabilities nursing across the four countries of the UK.
The values base for learning disabilities nursing
Learning disabilities nursing is based on clear values that include placing individuals at the centre of care and ensuring they are fully involved in all aspects of planning and intervention. It also acknowledges the critical contribution of family and informal carers.C Central to this are the following underpinning principles that guide learning disabilities nursing practice.
Placing the individual at the centre, valuing choice, inclusion, citizenship and social justice. Incorporates equality, individuality, person-centred and strength-based approaches, empowerment, self-determination, dignity and anti-oppression.
Supporting the individual's control and choice over their own life and services through empowering people with learning disabilities, their families and carers and relinquishing "control".
Equality and inclusion
Recognising diversity and challenging inequality and inequity by supporting people with learning disabilities to use the same services and have the same opportunities and entitlements as anyone else.
Meaningful engagement with people to identify goals significant to the person.
Focusing on existing strengths, skills, talents and resources and increasing personal competence.
Valuing the whole person and the diversity of people who support and sustain him or her. Appreciating the contribution of families and carers and, where possible, enhancing the contribution of others.
Recognising that health and social outcomes are interdependent.
Focusing on the individual's health and well-being to enable inclusive lifestyles.
Current role of learning disabilities nurses
Learning disabilities nurses work with people, families and carers with a wide range of abilities and needs and within a diverse range of settings, providing both generalist and specialist nursing care. Consequently, they require a wide range of skills (including "traditional" skills such as care planning and "non-traditional" skills such as accessible communicationD) alongside specific clinical, behavioural and psychological interventions.
Central roles of learning disabilities nurses can be summarised as:
- effectively identifying and meeting health needs;
- reducing health inequalities through the promotion and implementation of reasonable adjustments; and
- promoting improved health outcomes and increasing access to (and understanding of) general health services, consequently enabling social inclusion.
They also have an increasingly important role in helping to keep people safe and in supporting decision-making around capacity to consent and best interests.
These strengths provide a solid foundation for the development of learning disabilities nursing within the current demographic and policy context.
The UK Modernising Learning Disabilities Nursing Review
Learning disabilities nurses have been at the forefront in introducing and leading new ways of working to support reform, service modernisation and redesign initiatives, but an accountable and forward-thinking profession must future-proof itself.
The UK Modernising Learning Disabilities Nursing Review was commissioned and led by the Chief Nursing Officer for Scotland on behalf of the chief nursing officers across the UK. It reflects a four-country commitment to gathering and considering evidence on the current and future contribution of learning disabilities nursing. At the heart of the review is the commitment to supporting people with learning disabilities, their families and carers to achieve and maintain good health.E
The review does not stand alone: it is part of an ongoing consultative programme of work (see Box 2).
Ongoing consultative programme of work
The programme aims to:
Each country has involved people with learning disabilities, families and carers in a range of ways, either as members of steering groups or through focus groups and meetings with local organisations. In addition to hosting the UK Co-production Steering Group for people with learning disabilities, their families and carers, the Scottish Consortium for Learning Disability held focus groups for children and young people and people receiving support from forensic services.
The review was supported by a national programme manager reporting to the UK Programme Board, with four country-specific steering groups (Appendix 2).
Review processes included literature reviews, the collection of positive practice examples and visits to practice and education settings. Nurses were involved through workshops, conferences and information in the professional press, and focus groups were held for student nurses. In addition, a consultation was carried out with learning disabilities nursing students across the UK via two facilitated sessions using Facebook webchat, and two UK-wide events were held (one for learning disabilities nursing educationalists and one for professionals working in the independent/voluntary sector).
The review also worked closely with the Royal College of Nursing (RCN) to explore student aspirations and careers and to take forward work on image and recruitment.
Overview of the report
This report is relevant to all who design, develop, commission or deliver services for people with learning disabilities, their families and carers. This includes those working in the non-statutory sector, acknowledging their important role in improving outcomes and experiences.F
We recognise that people with learning disabilities, their families and carers already benefit from a raft of socially progressive legislation and policy throughout the UK, targeting their needs in areas such as health, social care, transport, housing and benefits. The recommendations consequently build on and support these national and local initiatives.
A fully accessible version of this report is being prepared for people with learning disabilities, their families and carers.
The report is structured around four chapters based on the four key themes set out in the executive summary with sections linking directly to the headings from Modernising Nursing Careers (11). Each chapter offers a brief narrative setting out key issues and recommendations for action. Positive practice examples collected through the review processes feature throughout, and the report ends with a conclusion and next steps.
The report's recommendations are also set out in Table 2, where the role of key players is proposed.
Email: John McKain
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