In England, select registered nurses work specifically with people who have a diagnosis of learning disability (LD). Within the Republic of Ireland and globally, this diagnosis is known as an intellectual disability. A diagnosis of LD is defined by the Department of Health and Social Care (DHSC) (2001) as, ‘a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood’. The approach and understanding of healthcare systems and societies towards LDs varies across countries. The likelihood of a person living with a LD having significant health issues—such as respiratory illness, severe constipation and mental health disorders—are 2.5 times higher than the general population (Heslop et al, 2014).
Historically, people living with a LD have been moved out of large institutions or hospitals, and into the community. This is often done as part of a physical integration process, with the overall aim of helping the individual operate as a valued, contributing members of society, to the best of their ability (Wolfensberger and Tullman, 1982). There continues to be consistent calls to educate society and improve holistic access to healthcare services, as the normalisation of LDs will help those living with them to integrate into society (Doody et al, 2022).
Specialist community learning disability teams (CLDTs) have been employed in England since the early 1980s. The CLDT is a collaboration of multi-disciplinary professionals, including specialist community nursing teams, who work to build links between services and co-ordinate a personalised holistic need-led service delivery for people living with LDs. Barnoux (2019) argues that research into the effectiveness of community LD teams has been neglected by the academic community, which in turn has presented challenges when defining what is ‘best practice’ in improving access to healthcare services. No lone healthcare professional can meet the complex and multiple needs of patients living with LDs; as a result, most practitioners aim to use a collaborative and measured approach to ensure the best possible health outcomes (Slevin, et al, 2007).
In England, LD nurses are widely recognised as having a positive impact on holistic healthcare; they also form a cornerstone of the Department of Health's (2012) and Health Education England's (2020a) commitment to a sustainable LD nurse workforce. A range of studies (McKenzie et al, 2022; Northway, 2022; Kuper and Scherer, 2023) have demonstrated that there are consistent inequalities and barriers to healthcare services around the globe; international human rights laws, such as the Convention on the Rights of Persons with Disabilities (2006), set out an international responsibility to address such inequalities (United Nations, 2006). People living with a LD and their carers report examples of poor practice, negative attitudes from healthcare professionals, difficulty navigating healthcare systems and experiencing an overall substandard care (Ali et al, 2013; University of Bristol Norah Fry Centre for Disability Studies, 2021). However, there are also examples of good practice, such as an article by Dalena (2015), which reported on an enhanced GP project in London, England, that was supported by specialist LD nurses. Their work with people living with a LD was described as an ‘aspirational standard of best practice’ and demonstrated that collaboration between primary care services and LD nurses can be effective and produce successful results.
An under-skilled workforce can increase instances of poor access to healthcare and stigma/negative attitudes towards people living with a LD (Doody et al, 2022). Investment in education, challenging current systems and building confident LD practitioners is key to reducing the influence of such factors (RCNa, 2021; Northway, 2022). The LD nurse has as range of duties, including the:
Their approach should be proactive, rather than reactive, and aim to reduce the inequalities faced by patients living with a LD (Public Health England (PHE), 2016). Further research is needed to explore the unique contribution of the LD nurse and evidence how the role contributes to improved care (Doody et al, 2022).
Despite the growing evidence base demonstrating the need for effective collaboration between LD nurses and primary care services, the researchers'—drawing from their own personal clinical experiences—feel that that collaboration is still not as effective as it should be. The consistent drive for normalisation and equality for people living with a LD in society is not always evident when linking with other services.
The researchers, working as an advanced clinical practitioner (ACP) nurse within LD services, has a keen interest in building collaboration between primary care services and the LD nursing team. They hope to provide an inclusive and accessible service for every patient with a LD. As an ACP, the researcher has a responsibility to contribute to the evidence base and provide education and leadership; therefore, this study was conducted to improve current and future practice (HEE, 2017; Nursing and Midwifery Council (NMC), 2018; HEE, 2020b).
Aims
This study aimed to detail and critically explore the lived experiences of LD nurses, and present a series of recommendations regarding how to improve the collaboration between primary care and LD nurses within community teams.
Method
Due to the exploratory approach of this research question, qualitative research was used to interact with participants and explore the subject matter. Non-probability sampling was utilised, using a purposive sample (Parahoo, 2006). The sample had a strategically-controlled bias to obtain valid and reliable answers to the research question (Davies and Hughes, 2014). A homogenous group, consisting of LD nurses working within a local LD community team, was selected. The sample size of four LD nurses was small, to give depth to the research and increase the level of detail able to be included in this article (Cleary et al, 2014). The results are not assumed to represent all lived experiences of LD nurses.
According to the Health Research Authority's decision tool (NHS Health Research Authority, 2022), Research Ethics Committee review was not required to conduct this research in England. Ethical approval has been granted by Herefordshire and Worcestershire Health and Care NHS Trust's research and development team, and the University of Worcester.
All the information regarding the aims and objectives of this study were given to each participant. Although no emotional consequences were identified as a risk for the recruited participants, the ACP was able to signpost participants to the staff intranet for advice and guidance on emotional support and supervision. While accessible, these services were not utilised by any participants. The information provided by participants was given voluntarily and written and verbal informed consent were obtained. Participants were anonymised in the research data and are referred to by numbers, rather than their names; in the discussion section, each participant was referred to as participant (P), followed by their allocated number (eg P1, P2, P3 and P4).
Participants took part in two semi-structured interview sessions, conducted over Microsoft Teams. With the participants consent, the audio of each interview was recorded and the researcher transcribed the data. Braun and Clarke's 6-step thematic analysis was used to identify, analyse and report themes within the data (Braun and Clarke, 2006; Braun and Clarke, 2022). The data was set to be destroyed within 12 months of collection and only anonymised information was stored for the purpose of the research recommendations, in adherence with policies of data governance from the European Union (GDPR) (Information Commissioners Office, 2023) and the UK's Data Protection Act (1998).
Findings
All four participants described their plan to make the LD nurse role more accessible through long-term collaboration with primary care. All the participants were enthusiastic and motivated towards improving patient care and expanding collaborative efforts with primary care services.
Reported challenges faced when collaborating with primary care services included time factors, expectations and colleagues not understanding the role of the LD nurse. Participants also referred to the LD nurse as a ‘link nurse’, ‘liaison nurse’ and a ‘health facilitation nurse’ when discussing collaboration with primary care services. After the interviews were transcribed and analysed, two main themes regarding the vision of the LD nurse and the perceived impact of the role, and the barriers experienced when engaging with other healthcare professionals, were extrapolated. They were summarised as:
Discussion
Improving health outcomes for adults with a learning disability
All 4 participants spoke with a clear passion about the advantages of the LD nurse role in co-ordinating care and reducing the health inequalities that exist when it comes to patients living with a LD. P1 stated that the role helped to reduce the deaths in people with LDs, and P3 agreed, stating that, when referring to preventable deaths, ‘people are dying, we can work better to make a real difference’.
Reducing inequality
This view is supported nationally within the evidence base, with Wilson et al (2022), stating that the LD nurse is ‘well placed’ to reduce health inequalities and improve healthcare outcomes for people living with a LD. McKenzie et al's (2022) paper describes avoidable deaths from causes—such as respiratory conditions, cardiovascular disease, diabetes and epilepsy—being significantly reduced when patients living with a LD receive support from the LD nurse, in collaboration with primary care. This is further evidenced by the ‘Learning from lives and deaths—people with a learning disability and autistic people’ annual report, (University of Bristol Norah Fry Centre for Disability Studies, 2021), which shows that improvement in the overall care of people with a LD, such as the kind provided by LD nurses, can potentially increase life expectancy of patients living with LDs by 1 year.
Providing education
All participants highlighted the importance of providing education to primary care services about reasonable adjustments and how such measures can improve equitable access to healthcare. P2 gave a specific example of a reasonable adjustment—‘suggesting about longer appointment times’—and was supported by P4, who claimed that they can ‘actually stop avoidable hospital admissions’.
This collaborative way of working is a key component of the UK Quality Network for Learning Disability Services Standards (Quality Network Learning Disability, 2021) and the LeDeR recommendations, (University of Bristol Norah Fry Centre for Disability Studies, 2021). As previously stated by Wilson et al (2022), such collaborative approaches can be highly constructive, and can provide insight of relevance to other countries that conduct similar work around the globe.
Impact on wellbeing
Each participant was able to describe a situation where the role of the LD nurse had resulted in a positive impact on a patient and/or their families. P1 describes building a patient's confidence to access the GP surgery:
‘A lady refused to go to the doctors…now she'll go on her own. But that was just me being able to build up that piece of work on her work with the GP, the nurses. So that she just used to come in and sit down, have a glass of water, read the magazine in the waiting room and then go. So, she just built up her confidence and [realised that the] doctor's isn't a scary place.’
P2 also supported the impact of the LD nurse role, explaining that:
‘There have been medical consultants and GP practices who have been fantastic, and there's been no hesitation. They are involved. They've communicated with me and the family members. So that's been some good communication as a team, [to help] that person to get their health needs checked, checked out and met.’
Impact on staff
The Royal College of Nursing (RCN) (2021a) has also reported positive outcomes and experiences regarding the integration of the LD nurse role, and has stated that they promote better communication and collaboration with primary care services. Examples of this include LDs using their expertise to educate primary care staff and patients, and ensuring that lessons from mortality reviews are learnt and changes implemented (Heslop et al, 2014; RCN, 2021b).
P1 supports the view that education breaks down barriers to accessing healthcare; they described how their experience as a LD nurse in providing reasonable adjustments and administering a vaccination to a patient at home served a model approach for their colleagues in primary care. This type of progress is transformative, particularly as these examples of collaborate practice demonstrate the reality of cost-saving inclusive health systems for all (Kuper and Scherer, 2023).
Collaborative initiatives between LD nurses and primary care staff have been shown to be effective, particularly when a patient's health needs are complex and multiple. This style of complex co-ordination and collaboration has been previously noted as skillset uniquely associated with the role of LD nurse, and has been described as vital to ensuring that people living with a LD can access the same healthcare services as everyone else (Smallman, 2011; Dalena et al, 2015; Doody et al, 2022).
However, the positive work driven by LD nurses has gone unreported and unmeasured (Lennox et al, 2015). As P4 and P3 describe, respectively:
‘There needs to be that monitoring to say this is the impact these health checks are having.’
‘If we're going to look at outcome measurements, then it'd be good if we had some sort of structured way of doing that.’
Overall, the transcribed interviews demonstrated that LD nurses make differences to peoples' lives, improve overall health outcomes and ensure people living with a LD have a better access to healthcare. However, the interviews also demonstrated that LD nurses feel frustrated that people living with a LD still face barriers to being fully integrated and included in an accessible and inclusive society. Although this theme demonstrates the positive impact of the LD nurse and the optimism of improved health outcomes, there are limitations to these benefits if healthcare services and patients are unaware the LD nurse role exists (McKenzie et al, 2022).
Lack of understanding
Role awareness
All 4 participants stated that they had been in situations in which other professionals did not understand the role of the LD nurse. P4 and P2 stated, respectively, that:
‘I don't think they understand, I think a lot of them are surprised about your knowledge.’
‘The number of times people have said “I didn't even know a learning disability nurse existed.”’
This is a common theme among the existing literature; often, the LD nurse role is not well known nor understood as a specific collaborative role outside of the LD nursing team. The process of primary care staff utilising the LD nurse was only understood where there was a clear benefit for both services as a priority within their area of practice (Robertson et al, 2014; Mafuba and Gates, 2015; Clare et al, 2017). P3 summarised this point of view as:
‘If those GPs and practice nurses feel that having a contact with us helps them in their job role, they are more likely to engage with us.’
As the community LD nurse is a unique and specialist profession, it can be difficult for people to define (Mafuba and Gates, 2015; Doody et al, 2022). This may determine why some primary care colleagues have conflicting views on the role and may be hesitant to reach out for support, particularly if they are not aware of the contribution that LD nurses can provide them (Robertson et al, 2014; Mafuba and Gates, 2015; Doody et al, 2022). These contributions can range from the reduction of LD-associated stigma and negative attitudes, to reducing hospital admissions and improving the overall health outcomes for patients living with a LD (Macdonald et al, 2018, Doody et al, 2022).
Legislation and policies
LD nurses can also bring specialist knowledge regarding specific legislation that other primary care staff may be less knowledgeable of. All participants referenced the Mental Capacity Act (2005) and the Equality Act (2010), and primary care staff's general lack of knowledge regarding how to use them in practice. P2 and P3, respectively, described that:
‘Consultants [do] not understand the Mental Capacity Act.’
‘They get very nervous about mental capacity and best interest.’
Macdonald et al (2018) highlighted that generally, primary care nurses did not know how to apply reasonable adjustments and had a lack of specialist health knowledge regarding conditions such as Down's syndrome. Targeting this lack of understanding was described as a vital part of the role of the LD nurse (Quality Network Learning Disability Services (QNLD), 2021). Each participant expressed frustration that they had not been utilised sufficiently to effectively combat this. P4 and P3, respectively, stated that:
‘The Equality Act and reasonable adjustments are sort of things that need to get out there really.’
‘I think if we could develop better relationships with the GP and the practice nurses. Ultimately, it would make our job a lot easier. I'd say they don't really understand what we do and how we can assist, and how we can work together.’
It is important note that primary care colleagues have also said the same of LD nurses (Robertson et al, 2014), who have been described as being inaccessible at times. Both Clare et al (2017) and Robertson et al (2014) have described this type of communication barrier as a concern, as it can build tension and frustration between primary care and community LD teams.
Tokenism
The LD nurses interviewed also described receiving a lack of time, investment and guidance from the leaders that commissioned and managed the service. Participants 3 and 4, respectively, described feeling like ‘token’ members of the workforce:
‘We've got a token role, and it's an add on to our role.’
‘It shouldn't be a token thing. It should be a service, a complete service for people.’
A lack of workforce investment, role clarity and use of outcome measures to showcase the LD nurses' full potential has been established as an ongoing failure within the health service (Mencap, 2004; RCN, 2021b). These factors have been attributed to the lack of government and societal investment towards improving inclusive healthcare for adults living with a LD (Mafuba and Gates, 2015; Doody et al, 2022).
Overall, the transcribed interviews suggest that healthcare professionals in primary care need to develop a greater understanding of the LD nurse role and legislation surrounding LD-related legislation and practices. Through doing so, the collaborative teams will be able to support mechanism to improve access to healthcare for people living with a LD. LD nurses appear to be motivated and determined to build links, offer support and inform services on the value of their role. Although it is evident that progress is being made, effective collaboration is not as consistent and successful as it could be.
Limitations
This research was conducted in one small LD nursing team. As such, the results are not assumed to represent the experiences of LD nurses working across other national and international regions/geographies.
Conclusion
This article aimed to consider the health inequalities faced by people with living with a LD and explore the role/experience of the community LD nurse working in collaboration with primary care. The transcribed interviews demonstrated the positive and holistic impact of the LD role, and established that they can be constructive in improving overall health outcomes. ACPs have a duty to analyse, learn and share alternative approaches, and effective research and recommendations, across the globe. These findings can help educate international practitioners ACPs and ultimately improve the healthcare services provided to the population of people who are living with a LD.
The enthusiasm and experience of each nurse interviewed showed that, when utilised to its full potential, the LD provides value to collaborative teams; these findings are supported by the wider evidence base (Slevin et al, 2007; Department of Health, 2012; Northway, 2022; Wilson et al, 2022).
However, LD nurses were also noted to be frustrated at the lack of understanding surrounding their role, the perceived ‘tokenism’ of their role, colleagues' lack of awareness of LD-related legislation and the reluctance of colleagues to fully explore the benefits of utilising and engaging with them. This is also supported by existing literature (Clare et al, 2017).
The academic community, including the LD ACP nurse, must prioritise research in this area of practice to build on the current limited evidence base. The authors of this study have several recommendations, which include: