Strengthening The Commitment: The Report of the UK Modernising Learning Disabilities Nursing Review

Chapter 4 Strengthening the profession

" Learning disabilities nurses listen to us and respect us as adults."
Person with learning disabilities

" My eyes have been opened to the world of adults with learning disabilities by the learning disabilities nurse. Delivering teaching sessions about young people and transition together has been an invaluable learning experience for us both."
Consultant paediatrician

This chapter addresses some of the key considerations underpinning modernising the learning disabilities nursing workforce in relation to:

• leadership and management
• promoting the profession
• research and evidence.

4.1 Leadership and management

Where we are now

Health and social care structures often bring together learning disabilities, mental health and/or community services, which means there may not be a senior learning disabilities nurse in a leadership role to ensure that learning disabilities nursing issues are identified and addressed. This local situation is reflected at national level: devolution in the UK has led to differences in policy and service provision across the four countries, which impacts on how leadership is defined nationally. There may not always be clear opportunities for learning disabilities nurses to demonstrate political leadership at this level.

There has been a lack of investment in some areas in leadership roles at senior level, including consultant nurse and advanced nurse practitioner roles, despite changing patterns of need giving rise to a requirement for strong leadership to drive the development of appropriate service provision.

Changing patterns of service provision and organisational structures have had an impact on the scope of management roles, affecting managerial responsibilities, accountability lines and supervision and appraisal mechanisms. Learning disabilities nurses working in multidisciplinary teams often manage, and/or are managed by, other professions.

The demographic profile of the profession indicates that many managers will be retiring from services over the next decade, resulting in a need for sophisticated workforce and succession planning.

Where we want to be

Strong leadership in learning disabilities nursing is essential, given the challenges set out in earlier chapters. Leadership is also important to drive forward the profession and to ensure a modernised workforce is in place to meet current and future needs. Learning disabilities nurses need to continue to acknowledge and develop their clinical leadership responsibilities and demonstrate and develop strong professionalism.

The leadership role should be supported through the development of clear career pathways, succession planning and leadership "champions" in all areas and through the creation of consultant nurse posts in key areas where there currently are none.

The need for a dynamic career and development framework to support learning disabilities nurses to become the leaders and managers of the future has been covered in Recommendation 4.

Positive practice example

Leading and influencing services (palliative care)

Community learning disabilities nurses in Bridgend, Wales demonstrated leadership in service development through making links with local palliative care services to increase their knowledge base and to "map out" services. Working collaboratively with these services, it became evident that individuals with learning disabilities within the locality rarely accessed palliative care services, which reflects the wider picture nationally.

The learning disabilities nurses identified resources to support people with learning disabilities, their families and carers and took measures to raise awareness of their needs for palliative and end-of-life care through an initiative called "Living Well, Dying Well." This and other measures were presented at a national palliative care conference in 2011.

The awareness-raising has led to requests to provide advice and support, creating opportunities to forge closer links with other services to meet the needs of people with learning disabilities, their families and carers. This work is continuing, with learning disabilities nurses:

• investigating systems to identify individuals with learning disabilities who have a life-limiting condition (this database will enable health professionals to strategically plan person-centred care for their future palliative and end-of-life care needs);
• continuing to work collaboratively with palliative care services to improve experiences of life and death; and
• continuing to contribute to the evaluation of the palliative care and end-of-life pathway with the aim of improving its efficiency.

For further information, contact Sharon Dixon at sharon.dixon@wales.nhs.uk or Claire Jenkins at claire.jenkins4@wales.nhs.uk

Recommendation 15

Leadership in learning disabilities nursing needs to be strengthened in practice, education and research settings with robust, visible leadership at all levels, including strategic and national levels. Services must ensure all learning disabilities nurses in clinical practice have access to a dedicated professional lead for learning disabilities nursing. In addition to existing leadership and development programmes, a UK-wide cross-sector project to nurture and develop aspiring leaders in learning disabilities nursing will be led by the four UK health departments.

4.2 Promoting the profession

Where we are now

Learning disabilities nursing has traditionally had a low profile among the general population and has received less focus than other nursing fields in policy over recent years. The demographic and policy challenges described throughout this report nevertheless mean that raising the profile of learning disabilities nursing is now more important than ever.

Learning disabilities nurses have historically embraced networking, and the strong existing networks for learning disabilities nurses across the UK provide a powerful platform from which to celebrate and promote their unique contribution.

Where we want to be

It is important that the profession is promoted to ensure all sectors are aware of the unique contribution and added value that learning disabilities nurses offer and that learning disabilities nursing is presented as a positive and rewarding career choice.

Promoting the image of the learning disabilities nursing profession therefore has an important part to play in encouraging recruitment, but it goes further than that. It is also about demonstrating to people with learning disabilities, their families and carers, the wider public, fellow professionals and policy-makers the advantages that learning disabilities nurses bring and developing their understanding of what they can deliver.

As part of that endeavour, partnership working with the RCN focusing on how the profession can be promoted to wider professional and lay audiences is being progressed, with a promotional resource under development. This work is expected to be completed in 2012.

The health and social care agenda provides further opportunities for developing networks that could strengthen partnership working across the profession in all sectors. Investment in forward-thinking, high-quality networks could support many of the initiatives outlined in this report.

Positive practice example

Managed Knowledge Network Learning Disability Portal, NHS Education for Scotland (NES)

The Managed Knowledge Network (MKN) Learning Disability Portal, supported by NES Knowledge Services, supports the health and social care workforce working with people with learning disabilities.

The MKN portal provides a sustainable, flexible and responsive means of ensuring that contemporary information on health needs and learning disabilities is available to the workforce quickly and efficiently, providing a platform for sharing best practice, promoting educational opportunities and hosting resources. The link to the Knowledge Network allows access to online journals and 500 bibliographic databases.

The portal also serves to bring together organisations and people with a common interest in finding, sharing and using knowledge to support people with learning disabilities. It includes online opportunities for accessing and sharing knowledge alongside support for development of skills and behaviours in finding and sharing knowledge effectively.

The development of the portal provides a unique opportunity for learning disabilities nursing to engage across all areas of practice and specialties and interface with other professional groups. The rapidly changing health and social care environment requires the learning disabilities nursing workforce to be responsive to change in practice, service alignment and integration.

The portal is designed for workforce use, but it also allows people with learning disabilities, their families and carers to access information and contribute to debates, helping to build confidence and influence in developing practice. The interactive model requires and encourages learning disabilities nurses to take ownership, engage and develop new initiatives and discussions, creating communities of practice.

This developing portal has the ability to network and engage across the UK, consequently linking national initiatives and helping translate them into local practice. The portal can respond, grow and adapt to changing technology, practice and policy.

For further information, contact Tommy Stevenson at tommy.stevenson@nes.scot.nhs.uk. The portal can be accessed at www.knowledge.scot.nhs.uk/learningdisabilities

Recommendation 16

Learning disabilities nurses need mechanisms to share best practice and develop the evidence base to continue to advance as a profession. Services must support learning disabilities nurses to participate in appropriate networks. A UK academic network for learning disabilities nursing will be created to support this drive.

4.3 Research and evidence

Where we are now

While the amount of research concerning learning disabilities nursing is increasing (25), there is still scope to further develop robust evidence. Learning disabilities nursing therefore requires support for:

• research activity
• research training
• implementation of research findings in practice.

Clinical−academic research careers have been promoted as one approach to developing partnerships between education and practice. A greater orientation towards evidence-based and evidence-informed practice can be achieved where educationalists have a clinical commitment within their portfolios and clinicians retain a strong education and research focus in their practice. Clinical−academic posts can promote greater integration between practice, education and research by supporting the enhancement of the evidence and education focus of practice and promoting a strong practice orientation in education and research. Currently, however, there are inconsistencies in the development and appointment of learning disabilities clinical−academic posts across the UK.

Where we want to be

Exciting opportunities nevertheless exist within the NHS and independent/voluntary sector to develop a broader range of clinical−academic roles that would strengthen and sustain practice, education and research provision. These roles should include researchers and educationalists maintaining links with clinical practice through clinical work, supervision of practitioners and joint working on particular practice development projects, and practitioners linking into education and research through teaching, research and initiatives that support education in practice. Clear organisational commitment is required to create models to develop sustainable roles such as these.

Research activity should be directly related to informing the practice of learning disabilities nursing and should focus on areas that add value and provide clear benefits to people with learning disabilities, their families and carers. Collaborative research studies involving higher education institutions that cover a range of geographic areas are required to facilitate larger-scale and comparative studies that can highlight differences and similarities in terms of need and developments. Existing links within the learning disabilities research community in the UK and internationally should facilitate this.

Most important, collaborative working with people with learning disabilities is essential to ensure that research is relevant to their needs and experiences. Learning disabilities nursing already has some good examples in this area and could lead on engaging, enabling and facilitating people with learning disabilities, their families and carers to participate in research.

Positive practice example

Learning disabilities nurses' involvement in research

The Confidential Inquiry into Deaths in People with Learning Disabilities is a three-year research study funded by the Department of Health and the Learning Disability Public Health Observatory in England. It is led by the Norah Fry Research Centre at the University of Bristol and is being carried out across Avon and Gloucestershire. The Inquiry is investigating all deaths among people with learning disabilities over the age of four years with the aim of adding to the current limited body of evidence, detecting any potentially avoidable and modifiable features involved in deaths and learning from positive practice.

The Mencap report Death by Indifference (7) highlighted the importance of involving families when evaluating care. In designing the Inquiry, the research team wanted to enable carers to be included and acknowledged that appropriately skilled staff were required to ensure that their views on the deceased were sought, understood and appropriately recorded. At the same time, it was important that their needs, as grieving carers, were also sensitively met.

As person-centred practitioners skilled in communicating with families and possessing sound understanding of the systems of care and complex health problems experienced by people with learning disabilities, a team of 11 learning disabilities nurses, supported by a lead nurse, were recruited to work part time as members of the Inquiry team. The nurses are seconded from their substantive posts to work with families of people who have died, conducting interviews, supporting them and signposting them to bereavement support agencies, if required. In addition, they advocate for the families at multi-agency local review panels held to discuss all death investigations.

For further information, contact Lesley Russ at lesley.russ@bristol.ac.uk

Recommendation 17

Learning disabilities nursing research should be extended to ensure practice now and in the future is evidence based and the impact of interventions can be demonstrated. Services and education providers must ensure that all existing and future schemes for clinical−academic careers have appropriate representation of learning disabilities nursing.