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

Chapter 3 Strengthening quality

" I had concerns about the [learning disabilities nurse] student being there… they were completely dispelled… His understanding and natural affinity for dealing with difficult situations mean if he is an example of the future we have no issues."
Family carer

" Learning disabilities nurses listen to you and make sure I have a say about what happens to me."
Person with learning disabilities

This chapter addresses some of the key considerations underpinning quality. Clearly, the appropriate preparation and development of learning disabilities nursing will contribute to all chapters of this report, but in this case has been linked to quality in relation to the following issues:

• demonstrating quality outcomes
• quality improvement
• preparing and developing learning disabilities nurses
• maximising recruitment and retention
• developing workforce knowledge and skills for the future
• accessing supervision.

3.1 Demonstrating quality outcomes

Where we are now

Demonstrating the quality, effectiveness and impact of learning disabilities nursing through outcome measurement presents a range of challenges, not least of which is the fact that learning disabilities nurses' work is often placed within a wider interdisciplinary and interagency team context that makes it difficult to identify their particular contribution to achieving outcomes.

Where we want to be

Positive health outcomes not only improve people's health status and quality of life, but also contribute to the achievement of organisational and policy drivers such as person-centredness, safety, effectiveness and efficiency through improving access to general health services, preventing admissions to hospital and securing early discharge.

A measurement framework of outcomes and outcome indicators would allow learning disabilities nurses to demonstrate their effectiveness in assessments, care planning and nursing interventions at individual and service levels within a multidisciplinary context. The potential for such measurement frameworks to be adapted and used across sectors to support health and social care integration should be explored.

A measurement framework should focus on effective assessment, care planning, intervention and evaluation. All interventions by nurses, individually or as part of a wider team, should be based on a competent and structured nursing assessment of the abilities and needs of the person with learning disabilities. Person-centred objectives for nursing interventions with identified timescales for evaluation should then be clearly written within nursing care plans.

An agreed set of indicators developed in collaboration with nurses and people with learning disabilities, their families and carers would allow the contribution of learning disabilities nurses to be evidenced and measured. This is particularly important given the current emphasis on efficiency, effectiveness and added value.

A range of outcomes and outcome indicators can identify effective and high-quality nursing care related to specific roles and practice settings. Examples may include:

• improvements in health status
• increasing access to general health services
• promoting independence and social functioning
• improving nutrition
• enhancing psychological and emotional well-being
• reducing seizures.

A more targeted and specific approach to outcome measurement dependent on role, function and setting may also be necessary. Role-specific indicators (for learning disabilities nurses employed, for example, as health facilitators or those working in acute liaison roles or within forensic services), condition-specific indicators (such as for epilepsy nurses), patient experience and quality-of-life outcome measures (via service user questionnaires and surveys, complaints and compliments, for example) and inclusion of learning disabilities in measurement of generic key performance indicators at service or policy level or via established rating scales (such as the Health of the Nation Outcome Scales for People with Learning Disabilities (HONOS-LD) (21)) will be required.

It is important that people with learning disabilities, their families and carers are involved in determining the outcomes.

Positive practice example

Developing behavioural family therapy

A specialist learning disabilities nurse in Lothian has worked with other clinicians in adapting and delivering behavioural family therapy (BFT) for people with learning disabilities and has trained 18 nurses to use the approach. The service now has three BFT trainers who specialise in learning disabilities and has developed close links with general mental health clinicians and trainers.

The approach is being implemented within several community learning disabilities teams. Clinicians now routinely use a series of outcome measures to monitor its effectiveness, with the client completing the Clinical Outcomes in Routine Evaluation - Learning Disability (CORE-LD) assessment and family members completing the Caregiver Strain Questionnaire (CGSQ) and the Family Functioning Questionnaire (FFQ). Care agency staff also complete an adjusted FFQ.

A successful case study demonstrating a reduction in carer stress for a family member and an increase in functioning for support staff and the family member was presented at the British Association of Behavioural and Cognitive Psychotherapy conference in 2011. A case series of five families was presented at the Seattle Club conference on research in intellectual and developmental disabilities in 2011. The results demonstrated a decrease in family stress on the CGSQ over the five cases, with family functioning improving in all members. There was a decrease in levels of distress in three of the four people with learning disabilities who completed the CORE-LD. It is noteworthy that services had been involved over a prolonged period of time for all five cases, suggesting that their problems were longstanding and that other treatment approaches had not been effective.

Learning disabilities nurses have increased knowledge and confidence following BFT training. The training has also given clinicians a clear structure to deliver the approach. Regular supervision has helped to maintain delivery while maintaining clinician confidence. Plans to further develop this work include:

• continuing to develop the evidence base evaluating the efficacy of the approach;
• expanding the BFT training to all community learning disabilities teams in NHS Lothian and continuing to expand the supervision network;
• developing better pathways for referrals and level of intensity of BFT based on the complexity of mental health issues;
• extending the BFT training to social work, allowing better joint working between health and social care; and
• establishing links with NHS Education for Scotland with a view to developing the approach for nurses on a wider scale.

For further information, contact Keith Marshall at keith.marshall2@nhs.net

Recommendation 9

Learning disabilities nurses, their managers and leaders should develop and apply outcomes-focused measurement frameworks to evidence their contribution to improving person-centred health outcomes and demonstrating value for money. This may require a specific piece of work to scope current frameworks.

3.2 Quality improvement

Where we are now

Learning disabilities nurses embrace the wider drive for evidence-based practice and improvement, but their contribution could be enhanced. Transformational work is currently being undertaken across the UK under patient safety programmes and work to drive quality, innovation, productivity and prevention. Elements of learning disabilities nursing practice may benefit from the systematic application of productivity tools like the Productive Series/Releasing Time to Care and robust improvement science.

Where we want to be

Learning disabilities nurses should increase their involvement in the range of transformational work, productivity, improvement and practice development.

Recommendation 10

Learning disabilities nurses should strengthen their involvement and links to transformational work, productivity improvement and practice development.

3.3 Preparing and developing learning disabilities nurses

Where we are now

A well-prepared, developed and supported workforce at all levels is essential to the delivery of quality health care for people with learning disabilities, and education and training throughout the career pathway is key to achieving this.

People with learning disabilities, their families and carers should be involved in all aspects of curriculum design, development and delivery.

Person-centred care (22) should be the foundation of learning disabilities nurse education. It has been defined as:

"... the delivery of a healthcare experience that recognises and responds flexibly to each person as a unique individual, builds trust and empathy, and engages them in decisions that affect their healthcare and wellbeing. Person-centred care is an approach which recognises that the quality of communication and human engagement with the person receiving healthcare will underpin the effectiveness of the clinical encounter, and therefore impact on the person's healthcare experience and outcomes."

This means working alongside people to identify meaningful goals that fit with their aspirations and the outcomes they want to achieve, rather than focusing on what health and social services think people need.

Where we want to be

Pre- and post-registration education programmes should be designed to reflect issues such as person-centred care and the personalisation agenda and the more complex care needs that are now presenting within the population.

This review focuses on learning disabilities nurses, but the importance of all nursing students at undergraduate level developing core knowledge and skills to work with people with learning disabilities, their families and carers cannot be ignored. This has been emphasised with the NMC standards for pre-registration nursing education (20) and the Michael Report into access to health care for people with learning disabilities (23).

Positive practice example

Supporting the development of skills and knowledge in other fields of nursing (percutaneous endoscopic gastrostomy (PEG))

People who are reliant on their nutrition, hydration and medication being administered via PEG can experience difficulties when their devices block or are removed. This can result in attendance at accident and emergency departments. Community learning disabilities nurses in Swansea work in collaboration with the accident and emergency liaison nurse, specialist nutrition nurse and hospital nurse practitioners to develop individual pathways for direct access to intervention. The outcomes of this work include:

• clear and safe pathways to access secondary care
• reduced risk of invasive interventions such as surgery or endoscopic procedures.

The nurses also identified that people with learning disabilities who had enteral feeding needs were sometimes having to access nursing home facilities for respite care, were relying on registered nurse home visits for domiciliary care, and were unable to access day services unless registered nurses were available. The community learning disabilities nurses worked in partnership with a wide range of organisations to develop a programme of training for independent sector care providers and social services to enable individualised person-centred care plans to be devised, meaning people no longer have to access nursing environments for respite and day services or be reliant on district or continuing care nursing services to deliver support. This process entailed seamless joint working and planning to minimise the identified risks to individuals and those involved in their care, while promoting person-centred services.

For further information, contact Helen Lewis at helen.lewis@swansea.gov.uk or Paula Phillips at paula.phillips@swansea.gov.uk

Recommendation 11

Those who commission, develop or deliver education should ensure that all learning disabilities nursing education programmes reflect the key values, content and approaches recommended in this report. They should also ensure that nurses in other fields of practice develop the core knowledge and skills necessary to work safely and appropriately with people with learning disabilities who are using general health services.

3.4 Maximising recruitment and retention

Where we are now

As we noted previously, the number of providers of pre-registration learning disabilities nursing education has reduced over the years. This will need to be addressed to reflect population and workforce planning needs.

Access to learning disabilities nurse preparation can be problematic for students in some parts of the UK, including remote and rural areas where no learning disabilities nursing education programmes are available locally. High attrition rates are a problem on some pre-registration programmes and the changing face of service provision for people with learning disabilities requires higher education institutions to develop a range of options for clinical placements that support the attainment of competences required by the NMC.

Throughout the review, students said that they feel more valued and better supported where there is strong mentorship in practice placements and close collaboration between practice and education settings. There are opportunities for learning disabilities nursing to trailblaze new models of delivery in education programmes that strengthen work-based support for students and enhance partnership working between education and practice settings.

Where we want to be

New approaches to identify and engage with potential recruitment pools, particularly existing nonregistered staff and students undertaking higher national certificate (HNC) programmes in further education colleges, are required. These opportunities are currently underexploited. The use of IT and social media may offer a route to accessing these groups.

The development of a wider range of accelerated routes and award models could further maximise potential to recruit from existing groups, including nurses on other parts of the register and people wishing to change their careers.

The wide range of educational technology now available provides more flexible options in relation to delivery of education programmes. Flexible and sustainable models of pre-registration curriculum development offer the most positive options for future progression in learning disabilities nursing, and the NMC standards promote these kinds of approaches. Models that support flexibility and sustainability, such as hub and spoke, blended learning approaches and disseminated models, should be considered to support effective delivery of pre-registration education across the UK. Innovative approaches to programme design and delivery that involve people with learning disabilities and families, promote rights-based and person-centred approaches and review options in interprofessional education must be more widely explored.

Recommendation 12

Updated strategic plans for pre- and post-registration learning disabilities nursing programmes are necessary for each country of the UK to support flexibility and ensure an efficient and sustainable model of delivery for the long term. This highlights the need for appropriate numbers of places on pre-registration learning disabilities nursing programmes to meet future workforce requirements.

3.5 Developing workforce knowledge and skills for the future

Where we are now

Post-registration education and continuing professional development (CPD) options are restricted by the relatively small learning disabilities nursing workforce. In addition, data on education needs and development opportunities, including those at post-registration level, are not easily available.

The skills profile of learning disabilities nursing is changing, with greater emphasis being placed on meeting complex health needs and employing specific interventions such as psychological therapies; some learning disabilities nurses are also assuming prescribing responsibilities. There are opportunities for higher education institutions and CPD providers to respond to these changes in the development and delivery of their programmes.

Nonregistered staff already play a vital role, which will change as the role of registered nurses develops. It is important that service providers build an educational infrastructure that meets the needs of this group.

Where we want to be

Creative opportunities for the development of education programmes include blended learning approaches, collaborative working across education providers and across sectors and further development of interprofessional education opportunities.

Positive practice example

Collaborative curriculum design and delivery

The learning disabilities team at Edinburgh Napier University has worked with people with learning disabilities, their families and carers, mentors and other stakeholders for a number of years to influence, design and deliver pre-registration nurse education for learning disabilities. People with learning disabilities, their families and carers and learning disabilities nurses are involved in the selection and interview of students and in developing learning materials, delivering sessions in the classroom, online and in the clinical skills labs, and assessing students in practice.

This partnership approach is central to education provision. In addition to a wide group of people who work as associate lecturers, a learning disabilities nursing development group and stakeholder group meet regularly to review and develop joint initiatives such as creating new modules, expanding the use of educational technology, supporting practice learning environments and promoting practice-based projects. The content of the learning materials has application to practice and the involvement of experts in delivery ensures students experience a strong focus on person-centred, family-centred health care that is relevant to practice.

With the move to increasing use of online technologies, a strategy is being developed to support people with learning disabilities, their families and carers and mentors to develop skills and competence in using technologies such as Elluminate Live and online discussion forums. This work has been commended by NHS Education for Scotland and the agency undertaking revalidation work for the NMC.

For further information, contact Janet Smith at ja.smith@napier.ac.uk

Recommendation 13

Education providers and services must work in partnership to ensure that educational and developmental opportunities for nonregistered staff are developed and strengthened and their benefits are evidenced through appraisal systems, and that educational and development opportunities are available for registered learning disabilities nurses to support their ongoing development, reflecting the needs of people with learning disabilities.

3.6 Accessing supervision

Where we are now

Clinical supervision is recognised as a supportive way to enable learning from experience with the aim of developing knowledge and improving care (24). It was evident through the review processes that learning disabilities nurses engage in supervision at a number of levels and with a variety of professionals during their careers. Engagement with clinical supervision nevertheless varies throughout the UK and possibly between sectors.

Where we want to be

Given the link between effective supervision, reflective learning and safe person-centred practice, supervision should be viewed as essential to contemporary learning disabilities nursing practice and must be supported by employers and nurses. They can demonstrate its value by creating and maintaining protected time and support for clinical supervision and by seeking to illustrate the outcomes of supervision in a way that demonstrates improvements in care.

Recommendation 14

Services should provide systems to ensure that learning disabilities nurses have access to regular and effective clinical supervision and that its impact is monitored and evaluated on a regular basis.