Chapter 1 Strengthening capacity
" I'm going into hospital soon and I'm not frightened anymore because [learning disabilities liaison nurse based in the hospital] will be there to make sure I'm all right."
Person with learning disabilities
" I believe learning disabilities nurses have helped support and move supporting people with profound and multiple learning disabilities onto people's agenda."
Senior community resource worker
This chapter addresses some of the key considerations underpinning efforts to strengthen capacity through developing the learning disabilities nursing workforce in relation to:
- location and employment
- strategic workforce planning and development
- new ways of working and new roles
- career choices.
1.1 Location and employment
Where we are now
Learning disabilities nurses work in a diverse range of settings, including assessment and treatment services, community teams, the independent/voluntary sector, the criminal justice system and the education sector, providing generalist and specialist nursing care.
Changing patterns of service provision mean that most nurses now do not work in institutions. Instead, they work within geographically dispersed, interdisciplinary and interagency community-based models. Some have strong links to, or are even located within, primary, secondary, mental health or acute services, though this is not common.
The independent/voluntary sector has increased its contribution to service delivery, becoming major employers of learning disabilities nurses in the process, although the precise extent of independent/voluntary sector involvement varies among the countries of the UK.
In some cases, learning disabilities nurses are employed in generic caring or managerial roles. This can lead to the loss of their specialist nursing skills to the service and disadvantage those nurses wishing to progress within appropriate career frameworks.
Where we want to be
Given the demographic and policy challenges highlighted in the introduction, there is a compelling case to assess the learning disabilities nursing workforce required to meet needs within general health services. This may include nurses working in health facilitator roles, in mental health or prison health services or in providing specialist input on a consultancy basis. Learning disabilities nursing skills and knowledge should also be valued in independent/voluntary settings.
In circumstances where nurses are employed in generic caring roles, consideration should be given to how the individual's range of nursing skills and expertise can be utilised to best effect to ensure good health outcomes for people with learning disabilities, their families and carers. In addition, nurses working outside the NHS and their employers should give serious consideration to the benefits of maintaining their professional registration.
Positive practice example
Positive behaviour support in community settings
The Richmond Fellowship Scotland is a social care provider supporting people throughout Scotland with a range of needs, including learning disabilities, autism, forensic needs and mental health difficulties.
The positive behaviour support team was set up in recognition of the fact that many individuals displayed behaviours perceived as challenging and that the organisation needed expertise and skills to support individuals effectively and train staff appropriately. The team comprises a manager and six behaviour support advisors from a range of backgrounds and includes staff with a learning disabilities nursing background. The team carries out functional assessments and, following this, behaviour support plans are developed for the local staff team to implement with support. This direct work with staff and people with learning disabilities is a key factor in successful implementation of the approach.
The model includes proactive and reactive strategies such as teaching new skills, developing communication, using reinforcement strategies and making adjustments to the environment as necessary. A periodic service review is implemented as an ongoing quality assurance tool; outcomes from this are graphed and fed back to staff teams to promote their commitment and involvement. Outcomes for people with learning disabilities are demonstrated by improvements in quality of life and reductions in behaviours perceived as challenging. Changes to staff attitudes and approaches are also evaluated.
For further information, contact Anne MacDonald at email@example.com
The four UK health departments and the independent/voluntary sector should establish a national collaborative to enable better understanding of, and planning for, a high-quality and sustainable registered learning disabilities nursing workforce across all sectors.
1.2 Strategic workforce planning and development
Where we are now
There are over 21 000 learning disabilities nursing registrants in the UK (see Table 1). Not all of these will be in current employment.
Table 1 Learning disabilities nurses on the NMC register, 2011
|Country||Total number of registered nurses||Number of registered learning disabilities nurses|
|England||533 205||17 458|
|Northern Ireland||22 564||722|
|Totals||655 935||21 123|
Source: Nursing and Midwifery Council
New registrant numbers have slowly reduced over the last 10 years, and the numbers employed by the NHS have also fallen. Questions on the viability of some pre-registration education programmes across the UK have arisen as a consequence.
We have tried to establish where these registrants are working as part of the review, but this has proved difficult, even within NHS settings. A number of factors could account for this, including learning disabilities nurses moving to employment in the wider health and social care sectors. As a result, we are unable to effectively plan for the future.
It is also worth noting that the current learning disabilities nursing workforce is ageing, with the potential for a significant gap in the workforce as experienced nurses retire or leave the profession.
Where we want to be
Further work is required to collect accurate data in relation to the size, location and setting of the current workforce to effectively plan for the future and to monitor progress with the modernisation of learning disabilities nursing. Systems are needed within each country to enable robust and sophisticated assessments of workforce requirements and enable appropriate responses, such as appropriate levels of education provision with comparisons across the UK. This must be taken forward in a partnership involving the statutory and independent/voluntary sectors to ensure a clearer understanding of future workforce requirements across all sectors and promote collaboration and integration.
Effective planning and the development of flexible working patterns will help to ensure valuable experience is maintained within the workforce.
Systems to collect workforce data are required in each country, with links across the UK, for workforce planning for future provision of learning disabilities nursing. These should be able to capture information on service provision, educational and research requirements and should cover the independent/voluntary sector.
1.3 New ways of working and new roles
Where we are now
Learning disabilities nurses are highly valued by people with learning disabilities, their families and carers. Compassion, respect and human-rights based values and attitudes are the core skills people with learning disabilities, their families and carers look for in learning disabilities nurses and in all health professionals. They have told us throughout the review that we are doing well in the following areas:
- encouraging empowerment and participation;
- promoting communication skills, including accessible communication;
- carrying out health checks, supporting access to hospital or primary care, helping with behaviour and teaching people about health;
- helping people to keep healthy and live in the community;
- supporting access to general health care (liaison roles are highly valued); and
- raising awareness around learning disabilities through education and training for all health professionals.
However, they also told us that we need to do better in a number of areas. These are reflected in our recommendations and include the following.
- Some people with learning disabilities do not have good experiences in specialist assessment and treatment services. Learning disabilities nurses need to involve people more in their assessment and treatment in these settings and avoid restrictive practices (linked to Recommendation 8).
- Children with very complex needs who are being excluded from education - learning disabilities nurses could support services to manage this better (linked to Recommendation 6).
- Consistency is important: where possible, people prefer to have the same nurse/named nurse (linked to Recommendation 5).
- Nonregistered workers should have a more robust training in learning disabilities (linked to Recommendation 13).
Where we want to be
Going forward, people with learning disabilities, their families and carers have told us that we should keep on doing the things we do now, but reduce the variability they experience and start to extend the role in the following areas.
- Supporting transition from children's to adult services continues to be problematic and carers would value more involvement from learning disabilities nurses (linked to Recommendation 6).
- Learning disabilities nurses could develop their role around discharge planning (linked to Recommendation 7).
- Learning disabilities nurses need to take time to get to know people, build trust and recognise that the person is the expert (linked to Recommendation 5).
- People with learning disabilities, their families and carers would like to be more involved in the selection of learning disabilities nurses, including students and the nonregistered workforce (linked to recommendations 5 and 11).
- People with learning disabilities, their families and carers could be more involved in nurse education for all fields of nursing. Other nurses still need more knowledge and skills in working with people with learning disabilities (linked to Recommendation 11).
- Nurses could expand their role into other areas, such as mental health and prisons (linked to Recommendation 4).
The potential for learning disabilities nurses to undertake new, advanced and extended roles should be developed in line with advances in other fields of nursing. Evidence collected throughout the review would support particular attention being paid to the development of competence around non-medical prescribing, psychological therapies, telehealth, and new roles supporting children and families (see Chapter 2) and people with learning disabilities within the criminal justice system. Some of these are considered in more detail below.
Criminal justice system
A high proportion of people with learning disabilities (7%, compared to 2.5% in the mainstream population (12)) travel through the criminal justice system as victims or perpetrators of crime, in police custody or within courts and prisons. It is essential to ensure that sufficient numbers of learning disabilities nurses work in these services, utilising their specialist skills in assessment, planning, diversion (where appropriate) and liaising with different agencies within custodial settings and after release.
Non-medical prescribing offers opportunities to improve access to medicines and reduce waiting times and is positively viewed by people who have experienced it as part of their care (13). The potential for extending roles through non-medical prescribing for learning disabilities nurses should be explored, particularly in relation to epilepsy and mental health care.
Positive practice example
An epilepsy nurse specialist in Northern Ireland is demonstrating the benefits to people with learning disabilities of undertaking a non-medical prescribing course.
The epilepsy specialist nurse role is varied in that it involves clinical management, education and training, and practice development. The post-holder recognised opportunities to provide advice to people with learning disabilities, their families and carers on medication changes rather than them having to wait for the medical clinician, enabling a timely, effective treatment regime to be initiated and reducing risks by preventing seizures and/or adverse effects.
As a result, the nurse sought to further her knowledge and skills to support competency in prescribing and titrating antiepileptic drugs and her understanding of pharmacokinetic properties and interactions. She successfully completed the non-medical prescribing course and an epilepsy nurse prescribing pathway was agreed within service.
She is now in a position to advise people with learning disabilities, their families and carers on medication changes promptly, based on assessed need. As is the case with the medical consultant who reviews the client's epilepsy at outpatient clinics, she will recommend medication changes to the client's GP, enabling the person's electronic record to be updated and the necessary medication to be provided for the long term. She also provides expert knowledge around epilepsy in people with learning disabilities to support GPs.
For more information, contact Edna O'Neill at firstname.lastname@example.org
A growing evidence base around psychological therapies and their benefits for people with learning disabilities supports the development of relevant skills by learning disabilities nurses (14,15). Nurses are encouraged to maintain and practice psychological interventions, supported by effective supervision. The ethos behind this process is to enable nurses to deliver approaches in line with a stepped-care framework, ensuring assessment and treatment delivery at the earliest opportunity and linking with other parts of the care system to reduce hospital admissions.
The increasing use of telehealth and telemonitoring across the UK has the potential to advance the personalisation, strengths-based and assets-focused agenda for people with learning disabilities, their families and carers. Learning disabilities nurses need to explore this potential within the systems in which they work.
The development of new, specialist and advanced role opportunities should be considered in light of workforce planning, service development and education provision. In particular, this should focus on the roles of non-medical prescribing, psychological therapies and telehealth and in specific settings such as the criminal justice system, mental health services (particularly dementia) and autism services.
1.4 Career choices
Where we are now
The range of statutory and non-statutory employment opportunities, alongside the integration of health and social care services, means that career choices are not always clear and career options can be limited by a lack of transferability between sectors and employers.
Where we want to be
Career pathways and progression should be clear across all services and settings to allow learning disabilities nurses to plan their career development. Modernising Nursing Careers (11) introduced the notion of structured career planning for nurses to enable them to develop knowledge and skills within existing roles that would also allow progression to more senior roles. Many initiatives relating to different levels of the NHS career framework have subsequently been advanced throughout the UK.
Education and training elements at all levels of the NHS career framework should be further developed to outline the knowledge, skills, attitudes and values required by the learning disabilities nursing workforce, including those in specialist practice and consultant nurse roles. This would enable the planning of education to meet workforce development needs, better meet the needs of people with learning disabilities, their families and carers, and act as the foundation for informing future developments in post-registration learning disabilities nursing education, research and scholarly activity. These developments could be utilised across sectors (with appropriate adaptation) to give a coherent career framework.
Positive practice example
Supporting reasonable adjustments
Working as a consultant nurse and senior lecturer, Jim Blair has a remit to lead the delivery and development of clinically effective, safe, lawful and appropriate practice within acute services for people with learning disabilities. The following examples show how the consultant nurse has been able to drive reasonable adjustments in hospitals to enhance the care and treatment experienced by people with learning disabilities.
Katherine has severe learning disabilities and her passport* says she is allergic to eggs. After reading this, the ward sister telephoned Katherine's home to clarify whether she experienced anaphylactic reactions or a rash. This was a precautionary measure, rather than a response to anything that had happened.
Vivek's passport stated that he "bubbles up liquids and regurgitates food". A doctor noted this and knew that this could indicate dysphagia, which can result in a person choking. Dysphagia is more common in people with learning disabilities, so it is vital to look for indications, as there were in Vivek's case, and quickly identify how to ensure optimum nutrition.
Without hospital passports, serious issues may be missed or left unaddressed. Clinicians at St George's Hospital in London were able to act on the information in the passports and to alert colleagues about the issues, resulting in effective care and treatment for both individuals.
Core reasonable adjustments at St George's
The following are standard for people with learning disabilities, their families and carers in St George's Hospital to help reduce anxiety, permit experts (such as family) to provide emotional and advocacy support, and to enable professionals to treat people in an efficient and timely way.
- No fixed visiting times for family, carers and friends of people with learning disabilities is general policy, so they can be with them for as long as they want.
- Food and drink is offered to family and carers to ensure they can be with the person they support at any time.
- The first or last appointment of the day should always be offered, so people who find it traumatic to wait do not have to do so.
- Double appointments are helpful because they permit a fuller assessment of people's needs, which is likely to result in more effective treatment and outcomes.
- A bed and/or chair are provided for a family member or carer.
For care and treatment to be equitable, adjustments need to be made so that the health care experiences and outcomes of people with learning disabilities in hospital are improved. An example of reasonable adjustments at St George's involved Trevor, a man who had capacity to consent to have dialysis but who pulled out the tubes after 30 minutes because he was unable to judge how long the procedure had taken and wanted to leave. The reasonable adjustment in his case was to provide a health care assistant to be with him throughout the four-hour treatment to talk with him and encourage him to complete dialysis. Over time, he stopped needing to have someone with him and now has dialysis by himself.
For further information, contact Jim Blair at email@example.com
*A hospital passport is a guide to the individual's health and well-being that is completed in advance of the hospital visit so that hospital staff have an accurate record of key information relating to their health and medical history (source: www.sabp.nhs.uk/services/ld).
Each of the four countries should consider aligning their existing post-registration career frameworks for learning disabilities nursing to clearly articulate the knowledge and skills required by learning disabilities nurses at all levels and across all settings. These developments could be utilised across sectors (with appropriate adaptation) to give a coherent career framework.
Email: John McKain
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