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Discussion

A flexible model to support person-centred learning disability nursing

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The Moulster and Griffiths learning disability nursing model provides a structured framework to help nurses provide effective nursing care

Abstract

Learning disability nurses play a crucial role in improving health outcomes for people with learning disabilities, but the specialty has been held back by the lack of a bespoke care model. This article describes the development of a flexible model of practice for learning disability nursing – the Moulster and Griffiths model – which is person centred, evidence based, outcome focused and reflective.

Citation: Moulster G et al (2019) A flexible model to support person-centred learning disability nursing. Nursing Times [online]; 115: 6, 56-59.

Authors: Gwen Moulster is consultant nurse, Gwen Moulster Consultancy, Southampton; Sarah Ames is lead nurse, Islington Learning Disability Partnership, London; Jane Iorizzo is registered nurse, Hannah’s House, Perth; Joshua Kernohan is community learning disability nurse, Midlands Partnership Foundation Trust.

  • This article has been double-blind peer reviewed
  • Scroll down to read the article or download a print-friendly PDF here (if the PDF fails to fully download please try again using a different browser)

Introduction

To improve the lives of people who have learning disabilities, learning disability nurses combine an intuitive approach and a clear set of values – such as inclusion and person-centredness – with outcomes-focused and evidence-based practice (Kernohan, 2019; Scottish Government, 2012). This article describes a bespoke model of practice for learning disability nursing that gives nurses clarity about their role and the difference they make, while ensuring all people with learning disabilities receive the same high standard of person-centred and evidence-based care.

Learning disability nurses

Why we need them

Approximately 1.5 million people in the UK have a learning disability, and numbers are rising as people live longer with increasingly complex health needs (Scottish Government, 2012). At the same time, the number of learning disability nurses employed by the NHS is falling (Royal College of Nursing, 2016).

People with learning disabilities experience more health problems than the general population (Scottish Government, 2012). They find it more difficult to access health services and are less likely to receive timely and appropriate interventions, leading to poorer outcomes and a greater risk of death from preventable diseases (Department of Health, 2013).

Learning disability nurses play a key role in helping people access appropriate services, while also helping other health and social care professionals make reasonable adjustments (Kernohan, 2019). They have a crucial role in:

  • Assessing and addressing the health needs of people with learning disabilities across the lifespan;
  • Improving engagement with the public health agenda;
  • Working with behaviours that challenge (Scottish Government, 2015; Scottish Government, 2012).

What they do

Learning disability nursing involves supporting people with diverse and complex needs. It requires expertise in assessment, communication, health promotion, education and empowerment. Patient outcomes rely more on nurses’ ability to build relationships and communicate than on technical skills (Kernohan, 2019). This can make the role harder to define, and interventions harder to measure, than in nursing disciplines in which the focus is on making ill people better.

Following the shift from institutional to community models of care, learning disability nurses have been at the forefront of transforming and improving services (Scottish Government, 2015). They have led the way in:

  • Challenging prevailing attitudes;
  • Implementing a social, rather than medical, approach to learning disability care that upholds individuals’ rights;
  • Encouraging others to adopt person-centred care (Kernohan, 2019).

Despite this, learning disability nursing is sometimes seen as being of lower status than other nursing disciplines and the role is often questioned (Kernohan, 2019). This is partly a legacy from the days when learning disability nurses were hidden away in long-stay institutions and said to be affected by a “parallel stigma” similar to that experienced by their patients (Mitchell, 2002). However, learning disability nurses have also been less effective than colleagues from other nursing disciplines at articulating their unique contribution and developing a robust evidence base (Kernohan, 2019).

Benefits of nursing models

A nursing model is a shared philosophy that informs the way nurses practise (Kernohan and Moulster, 2019). The nursing process – assessment, planning, implementation and evaluation – tells nurses what to do but gives little guidance on how to do it (Barrett, 2012), which can lead to a gap between best practice and practice on the ground (Kernohan and Moulster, 2019). Nursing models help to bridge that gap by providing a framework for planning and delivering care that can be developed for particular disciplines or client groups (Kernohan and Moulster, 2019; Barrett, 2012).

Using a nursing model can improve consistency of care, reduce conflict, and guide decision-making, goal setting and even recruitment. It can help patients and other professionals understand the role of the nurse, enable teams to provide continuity of care and ensure all service users receive the same high standard of person-centred and evidence-based nursing care (Kernohan and Moulster, 2019).

A person-centred model of practice could improve health outcomes for people with learning disabilities, but has been held back by the lack of a bespoke nursing model (Kernohan and Moulster, 2019).

Developing a learning disability nursing model

In 2008, Haringey Learning Disabilities Partnership identified a need for a shared vision of learning disability nursing that would help frame the work of practitioners in different settings and ensure consistent high standards of care. Such a model would help nurses to work in a structured, evidence-based and reflective way, while using their experience and intuition and taking into account service users’ individuality (Moulster et al, 2012a).

A review of the literature and of existing frameworks led to the creation of a bespoke model for learning disability nursing, the Moulster and Griffiths model (Moulster et al, 2012a; Moulster et al, 2012b). This gives nurses guidance and tools to carry out person-centred assessments, holistic care planning, evidence-based interventions and reflective evaluations. It also features case studies demonstrating how to use it.

The model was piloted in a range of care settings in Haringey; this involved using its supporting tools, conducting a qualitative review of the nurses’ experiences and auditing documentation (Moulster et al, 2012c). After the pilot, the model was amended and improved, with nurses encouraged to use it routinely from October 2010.

Since then, the model, its tools and methods have been updated several times so they are easier to use and respond to changes in policies and practice. Recent updates have focused on reducing health inequalities for people with learning disabilities, helping nurses reflect on the impact of their interventions and enabling assessments to be generated electronically.

What the model looks like

The model comprises seven stages that follow the four stages of the nursing process (Table 1). It encompasses the values of learning disability nursing contained in Strengthening the Commitment (Scottish Government, 2012) and a reflective approach consistent with the Nursing and Midwifery Council’s (2018) revalidation requirements. It contains many new features but also draws on elements from:

  • Orem’s (2001) self-care nursing model, which supports individuals’ independence;
  • Aldridge’s (2004) person-centred ecology of health for people with learning disabilities, which encompasses eight holistic domains that allow nurses to build a picture of each person to formulate their health needs;
  • McCormack and McCance’s (2006) outcome-focused, person-centred framework, which includes the context in which care is delivered and how nurses’ personal attributes influence delivery;
  • Gibbs’ (1988) cycle of reflective practice, which encourages an evidence-based and outcomes-focused approach;
  • The Health Equality Framework (HEF), an outcome measurement tool designed for learning disability nursing (Atkinson et al, 2015).

Fig 1 illustrates how nurses can apply the model to the nursing process.

table 1 the nursing process and moulster and griffiths model

fig 1 applying the model to the nursing process

Four key principles

The model is based on the principles that care must be person centred, evidence based, outcomes focused and reflective.

Person centred

Being person-centred is not only about focusing on the person’s individual circumstances and needs, but also about finding out what really matters to them and applying that at every stage.

The model includes a screening tool based on the work of a person-centred planning team in Hampshire (Amey et al, 2006). It is used to assess how people’s history, lifestyle, environment and support affects their life and wellbeing, along with what is important to them and how this might change over time. Another feature is the comprehensive nursing assessment, which is a key part of building a relationship with the person.

The model offers several care plan formats, all with person-centred components. An easy-read format can be given to service users, their relatives and carers, with whom close relations are fostered from the start.

Evidence based

Setting up a care plan requires considering and documenting the evidence that underpins it. This can be evidence from the nurse’s own experience and knowledge of best practice, as well as that obtained from the literature.

People with learning disabilities often have complex histories and needs, so an approach that is right for an individual may not have a clear validated evidence base. Using knowledge of the person supports person-centredness, but interventions must be ethical and based on evidence of good practice. Finding effective ways of working with a person can also help to build a new evidence base, which can be validated and shared.

Outcomes focused

The model is designed to prompt nurses to think about outcomes right from the start. They are encouraged to measure outcomes and can use any appropriate tool to do so.

One such tool is the HEF, which was created by the UK Learning Disability Consultant Nurse Network and piloted alongside the Moulster and Griffiths model. The HEF enables nurses to measure the impact of social determinants of health inequalities on a person with learning disabilities and how nursing interventions may reduce that impact (Atkinson et al, 2015).

The evaluation process captures a HEF score, but it also looks at factors such as whether the person-centred goals were met, how nurses helped the person achieve these goals, and how the intervention achieved desired health outcomes.

Reflective

The model encourages nurses to reflect on their interventions at every stage. It includes several tools they can use to reflect on their practice, improve the care they provide and gather evidence for revalidation.

A flexible model

Nurses use the assessment, alongside the screening tool and HEF, to inform the care plan and their proposed interventions, and reflect on the priorities and delivery of care. In the care plan, they consider desired health outcomes and how people can achieve person-centred goals, backing up their interventions with documented evidence of best practice and research findings. HEF scores provide a measure of outcomes, and care plans are continuously evaluated and updated to reflect changing needs. Throughout the process, nurses can use tools to evaluate and reflect on their practice.

The model is not prescriptive. Nurses can choose which resources and tools to use and adapt them to, for example, design their own assessment format or outcome measure. Box 1 features a case study showing how it can be used in practice.

Box 1. Case study: using the model in practice

Joanne Brown* is 28 years old and has a moderate learning disability. She was referred to community learning disability nursing for sexual health education after concerns about her lifestyle and family environment triggered a ‘safeguarding of vulnerable adults’ (SoVA) alert. As a child, Ms Brown was monitored by social services due to unstable housing; she is currently living in a council house with her aunt.

Assessment
The learning disability nurse assessed Ms Brown with her aunt present; she was initially reluctant to speak for herself, but gradually opened up and showed herself to be personable and capable of speaking her own mind. The nurse established the things that were important to Ms Brown: from a mixed African-European background, she enjoyed the culture, music and food from her African heritage and, although her family was important to her, she lacked a social circle outside of it.

Ms Brown was happy to be single but had unprotected sex with men and was unaware of safe sex and contraception. Despite being sexually active, she had never had cervical screening or a health check with her GP. She had epilepsy but her seizures were reasonably well controlled with medication. She was obese, took little exercise and was unaware of healthy eating, which put her at risk of diabetes. She was self-conscious about her weight and had low self-esteem, which, combined with her social isolation and disruption in the family environment, left her vulnerable to depression.

Her HEF score showed that, without intervention, Ms Brown’s health and wellbeing were at risk. Her aunt, who was a little guarded at first, recognised her niece had an unhealthy lifestyle and engaged in risky behaviours, and wanted support to help keep her safe.

Care plan
The nurse helped Ms Brown to create an easy-read care plan based on her aspirations, which were to:

  • Have more confidence in herself and her body so she could feel more feminine and wear the clothes she liked
  • Join a fitness club and find out about healthy eating
  • Continue to live with her aunt and spend time with her brothers, nieces and nephews.

The nurse also created a detailed professional care plan incorporating Ms Brown’s aspirations and identified nursing objectives to:

  • Work with her on her sexual health knowledge and support her to access sex education and sexual health services, along with weight loss support
  • Work with her GP to facilitate annual health checks
  • Begin a health action plan with Ms Brown and her aunt.

The professional care plan included detail from the person-centred screen, assessment, HEF+ profile and the nurse’s reflections and evidence base for the chosen interventions.

Outcomes
Ms Brown attended six sexual health education sessions and a joint session with her nurse and social worker. Her sexual knowledge score improved and she was able to identify to whom she should talk about any experiences that were uncomfortable or worrying. The SoVA alert was lifted and Ms Brown continued living at her aunt’s home, with ongoing monitoring by the social worker.

The GP referred Ms Brown to a health and fitness club. Her aunt and sister attended the first sessions with her and encouraged her to continue attending. In the first six weeks, Ms Brown lost 3.6kg and was no longer classified as obese. She continued to attend and also expressed a desire to join a cookery club. She started to take more interest in her personal care and hygiene, and gained enough confidence to try on a dress for the first time.

Ms Brown’s HEF scores decreased, reflecting improvements in her lifestyle and wellbeing. However, she still had a poor understanding of her epilepsy or when to go to the GP and did not want to carry a health passport. To help address any unmet health needs, the nurse proposed extra support with attending health appointments, including annual health checks.

Reflection
In her reflection, the nurse was able to identify key domains in Ms Brown’s care in which nursing interventions had made a significant difference.

*The service user’s name has been changed.

Conclusion

The Moulster and Griffiths model has been adopted by a number of services – including inpatient services, respite services and community learning disability teams – in a range of settings in the UK. Experience shows that it provides a flexible framework that can meet the needs of people with learning disabilities as well as learning disability nurses, and is capable of responding to the rapid pace of change in learning disability nursing. 

Key points

  • Learning disability nurses play a key role in improving health outcomes and reducing health inequalities
  • Learning disability nursing requires expertise in assessment, communication, health promotion, education and empowerment
  • The Moulster and Griffiths model of learning disability nursing is person centred, evidence based, outcomes focused and reflective
  • It clarifies the role of learning disability nurses and ensures all people receive the same high standards of care
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