How learning disability specific training for professionals in hospital settings could enhance patient care

An extended essay about how health professionals in hospital settings attending learning disability specific training could improve the care they provide to patients. Contributed by Tori Smith, 3rd year Learning Disability Nursing student at the University of Hertfordshire. September 2020


This discussion expands on how health professionals would benefit from additional education to be able to provide the correct support for patients with a learning disability in hospital settings. The focus being that staff receive training in hospital settings about diagnoses overshadowing and designed to increase awareness for healthcare workers on how to appropriately provide support when they are admitted into hospital. The learning disability population is largely impacted by experiences where their health issues have been misdiagnosed due to diagnostic overshadowing. Diagnostic overshadowing has been evidenced to support elements of this community being subjected to health inequalities. Research has illustrated that there is insufficient training for staff on how to support people with learning disabilities and that this could be contributing to 1,200 preventable deaths. One campaign found that health staff had reported they had never attended training on supporting patients with a learning disability. They also reported that they believed the quality of healthcare provided was poorer than what the general population received and that a lack of education on learning disabilities could be related to the premature deaths. This establishes a gap in the provision for accessible healthcare for people with learning disabilities. A systematic review was conducted of research articles located from medical databases. The main conclusions are that professionals need to be aware about diagnostic overshadowing and know how to avoid it occurring to prevent loss of life. Further education is also essential to patient care and safety, including the ongoing learning for staff and health professionals who support people with learning disabilities.

I decided to delve further into the training of hospital staff and diagnostic overshadowing due to my own experiences as a care worker and student nurse. I have been a witness to adults with learning disabilities being initially offered inadequate care and seen the results of patients having delayed treatments due to having conditions misdiagnosed. These encounters triggered a great deal of emotions for the people that I was supporting as well as for myself as a trainee nurse. These experiences provoked me to ask myself a lot of professional questions. How could these situations have been avoided? Would the care provided by the staff involved have been of a higher standard if they had a better understanding on how to support these patients and know how to thoroughly investigate their health concerns? I was also intrigued by how a training session would be perceived by healthcare staff and if it would be proven to be beneficial to the staff and patients. To be able to find answers to these questions, I needed to conduct some extensive reading of a range of materials to gain more information.

Background information on diagnostic overshadowing and care for people with learning disabilities

The learning disability community are predominantly affected by having their health issues misdiagnosed due to diagnostic overshadowing. Diagnostic overshadowing has been highlighted to be a contributing factor to the learning disability population experiencing health inequalities, (Shefer et al, 2014). The Confidential Inquiry into premature deaths of people with a learning disability (CIPOLD, 2013) recognised that 38% of people with a learning disability died from preventable causes when compared to a 9% similar population of people without a learning disability in relation to diagnostic overshadowing. NHS England and NHS Improvement (2019) LeDer states that 7% of deaths overall for people with learning disabilities are caused by sepsis or a lack of identifying deterioration and these are the third most frequent causes of death. It is also more probable to be the cause of death when there have been identified shortfalls in a person’s care, (NHS England, 2015). For people with learning disabilities there are additional obstacles to identifying diagnoses. Marsden (2018), an NHS doctor, claims that individuals with a learning disability are more at risk of infections and of their symptoms progressing at a quicker rate; as well as being at higher risk from developing illnesses like sepsis.

This could be due to communication barriers, which are often worsened when a person is ill, or professionals presuming the signs are just a normal display of their pre-existing condition which is a form of diagnostic overshadowing (Marsden, 2018). Javaid et al, (2019) defined in their research case study, that diagnostic overshadowing in as when symptoms generated from a physical or mental health issues are misattributed to a person’s learning disability; resulting in postponed diagnosis, treatment and potentially contributing to unnecessary deaths. There are different types of diagnostic overshadowing, such as a person receiving a less thorough physical or mental health investigation or having lower health screening attendances or invites, (Ali & Hassiotis, 2008). For instance, Osborn et al, (2012) used poisson regression whilst comparing four cohort studies of people with and without learning disability in the UK and concluded that individuals with a learning disability were significantly less probable to receive cancer screening tests than those without a learning disability. The misdiagnosis of illnesses like sepsis has caused concern to health professionals leading to many interventions being devised to try to limit the negative consequences within the learning disability community, (Mitchell, 2018). NHS England and NHS Improvement, (2019) highlighted within the Learning Disability Mortality Review report (LeDeR) 576 of 1,311 cases suggested an underlying cause of death at the time of notification. This prompted staff across the National Health Service to be more involved with the education to people with learning disabilities and the people that support them. The LeDeR has recognised sepsis as one of the main causes of deaths of people with learning disabilities (National Health Service, 2019). To diagnose a patient with sepsis can present as challenging due to its early presentations and symptoms can often appear as mild and may imitate other conditions such as routine post-operative recovery, (Vincent, 2016). Vincent (2016) recognised during his exploration into the benefit of using biomarkers to diagnose sepsis, that these complexities could be attributed to under or over diagnosis. Under diagnosis (in relation to sepsis) would be a patient who seems confused or has a low platelet count but has no other indication of an infection, whereas over diagnosis would be a postoperative patient with fever who is prescribed antibiotics despite this being a common aftermath rather than an infection, (Vincent, 2016).

Alongside challenges that are illness specific, Phillips, (2019) showcased in his mixed method approach study, where literature and case study reviews were undertaken, that there are also the added obstacles that make finding a diagnosis harder in people with learning disabilities in hospitals. These included behavioural difficulties, low tolerance to medical procedures and equipment or there not being enough reasonable adjustments put in place for the individual (Phillips, 2019). The LeDeR report also emphasized a requirement for staff to improve interprofessional working and communication; awareness of the needs of people with learning disabilities and understanding the Mental Capacity Act 2005, (NHS England and NHS Improvement, 2019).

This report created similar recommendations to those of the CIPOLD but also included a need for mandatory learning disability awareness training for all staff, with active involvement from people with learning disabilities and their families and to raise the understanding and treatment of pneumonia and sepsis, (NHS England and NHS Improvement, 2019). Mizen & Cooper (2012) suggests that professionals need to take a more proactive approach to overcome these barriers which includes more staff education. Glover & Emerson (2013) used two types of grading methods to approximate the annual total of deaths of people with learning disabilities in England. They used the findings from the CIPOLD report to do so. One scaling system used was focused on the ages of the population within the study area and country; the other on the General Practice Quality and Outcome Framework learning disability register statistics. Glover & Emerson (2013) highlighted from this research that insufficient training on how to support people with learning disabilities could be causative to 1,200 avoidable deaths of people within this population that occur yearly. Mencap’s ‘Treat Me Right’ campaign (2018) found that out of the 500 healthcare professionals that answered their questionnaire, 23% had never attended training on supporting patients with a learning disability. Another 37% thought the quality of healthcare provided to patients with a learning disability was poorer than what the general population received and 45% felt that a shortage of education on learning disabilities might be contributing to premature deaths. This demonstrates a clear gap in the provision for making healthcare accessible for people with learning disabilities, (Mencap, 2018). Together with this, healthcare staff should know the signs and symptoms of the main conditions that appear in their departments and know the correct procedures to follow regardless if the patient has a learning disability, (Thomas & Galla, 2013).

By staff attending training sessions it allows for safe practice and gives everyone mutual responsibility and accountability. The Royal College of Nursing, (2018) stated that staff completing required training facilitates the workforce to have the correct, up to date knowledge and skills to fulfil their tasks, reducing risks to themselves and others in relation to equipment, procedures or practices that are part of the professionals role. Gesme et al, (2010) claimed in their journal article detailing the necessary requirements of staff development, located on the NCBI database, that the benefits of staff training have been recognised as increased employee retention, morale, practice efficiency, job competency and patient satisfaction. Staff who attend regular training often experience professional progress and those who acquire department specific training are usually more constructive and self-confident, (Gesme et al, 2010). Staff education equally affects the patients, who benefit from the staff’s positive attitude, skills and productivity and it has also been reported that employees who perceive themselves to make a difference in their practice usually produce better quality work, (Gesme et al, 2010). Regardless of the benefits and potential repercussions that non-compliance may cause, many organisations are often unsuccessful when meeting their target figures, (RCN, 2018). This can be because of several barriers that the representatives of the Royal College of Nursing outlined in their publication designed to aid workforces better their staff development, such as time and cost having a huge impact on health care settings as they can be very demanding workplaces, where staff assets may be overexerted (RCN, 2018). This can cause difficulties for managers when releasing staff to attend training and can lead to situations where staff are needed to go back to work at short notice due to the staff shortages which training can add too, (RCN, 2018).

Another barrier is the appropriateness and standards of some online training. Online learning has become vastly popular due to its cost effectiveness; however, it can sometimes lead to a less meaningful educational experience, (O’Doherty et al, 2018). O’Doherty et al (2018) highlights that these online training commonly use sections of guidance or policies and condense the information which means there is not much opportunity to expand on any further information or ask questions. This method can also become a ‘tick box’ exercise for staff who can then find shortcuts to finishing this type of training; which could be by sharing the answers or staff working as a group, (RNC, 2018). Stephenson (2019) believes that a learning disability training would benefit more from having a face-to-face element; involving people with learning disabilities and utilising real-life case studies, would help to ensure the training was a meaningful exercise and would hopefully raise the chances for staff attaining the sought after attitudes and behaviours. Alongside these barriers, there are the issues around accessibility and inclusion for staff such as the time and location of the training, reasonable adjustments for people with extra requirements and being able to have access to IT equipment and support to use it, (Garg, 2018). Another possible hindrance for training sessions is that for certain staff, the words ‘statutory’ and ‘mandatory’ indicate a lack of choice over whether or not they want to attend, (RCN, 2018). By being made to attend something they feel has no relation to their field of practice may be negatively received, which can impact on the message of the benefits and importance of the session, (RCN, 2018).

In the Good Practice Guidelines established by The Hillingdon Hospitals NHS Trust it is stated that it is vital for hospital settings that all their staff are following the correct procedures and all know how to provide support to people with learning disabilities as they can require treatment from any department; meaning they could come into contact with a wide range of professionals, (Head of Safeguarding & Learning Disability Nurse, 2013). It has been internationally acknowledged that efficacious teamwork is a crucial part of forming a more successful and patient-centred health care, (Babiker et al, 2014). Professional’s may sometimes argue that their level of experience within a practice and their resources should be focused on research or their efforts spent on patient care, whereas staff learning and development should be the obligation of practice managers but professionals have a vital role in educating staff, (Gesme et al, 2010). Gesme et al, (2010) stated that all physicians of a higher status are crucial to staff development by leading by professional example, demonstrating its priority, and supporting the education in their financial budget and attitude. The theory being that if staff developments are of a low concern for the management, they will not be of high priority for their staff, (Gesme et al, 2010). This supports the notion that if all staff are adequately trained and worked together by using the same knowledge, despite speciality or level of experience, that people with learning disabilities would experience less health inequalities including diagnostic overshadowing. Owen (2018) partook in a project that aimed to create an NHS and care provider interprofessional working procedure for patients with learning disabilities as they transition between social care and NHS hospital services. From a protocol being developed its desired outcome was for enhanced experiences for people with learning disabilities when accessing hospitals and to facilitate a transparency in the responsibilities of healthcare providers and their roles, (Owen, 2018). National reports that Owen’s (2018) paper refers to, (death by indifference, CIPOLD etc.) predominantly recommends for an improved knowledge of learning disabilities amongst hospital staff through training. Fundamental areas were identified as needing further development, such as safeguarding, knowledge about and how to implement the mental capacity act and learning disability and autism awareness, (Owen, 2018).

Paula McGowan advocates for these advancements in training and investigations into the unexpected deaths of people with learning disabilities and autism subsequently to her own son Oliver dying in what she conceives as preventable circumstances, (McGowan & McGowan, 2019). Paula has expressed during ‘Oliver's Campaign’ that she feels that learning disability nurses would best suited to train other healthcare staff and believes this would aid raise the status of an under-valued field of nursing, (RCNI, 2019). Due to Paula’s and Mencap’s combined campaigning, in November 2019, the Department of Health and Social Care declared that mandatory learning disability training for all health and social care staff will be enforced by the government, (Mencap, 2019).

Effectiveness of staff training

By the government acknowledging a gap in the provision, it supports that education is imperative to patient care and safety which not only means educating the patients, but also includes the ongoing learning for staff and health professionals, (NHS, 2016). Effectiveness is a managerial concept that is commonly viewed and studied by management experts, (Louyeh et al, 2016). Louyeh et al (2016) conducted a descriptive survey study where they analysed the results from questionnaires using the Cochran formula and computer software. The aim of their research was to inquire into the effects of different types of staff empowerment and how or if they affect the effectiveness of staff. For example, does servicing, consulting, and training staff impact the levels of staff satisfaction and performance, (Louyeh et al, 2016). The findings found that there is a substantial positive link between the different forms of empowering staff and dimensions of effectiveness, (Louyeh et al, 2016). There was limited research conducted on measuring the effectiveness of staff training within healthcare. Louyeh et al (2016) study was conducted in a banking environment, which may render the supporting evidence as dismissable as there is no solid proof that this theory can be applicable into different work settings. McCulloch et al, (2011) conducted a study on the crucial impact of teamwork and communication within health sectors due to the rise in concerns of the high amount of unintentional harm to patients. McCulloch et al, (2011) noted previous experimental programmes regarding teamwork training for clinical staff and recognised they were largely founded on aviation models; which are broadly thought to be operational in optimizing patient safety, but whether there is enough evidence to justify this claim persists to be uncertain.

McCulloch et al, (2016) undertook a systematic literature review on the effects of training and teamwork for professionals and established that most studies observed an improvement in staff attitudes. Six of eight reported considerably better teamwork following training and five of eight studies found a heightened efficiency or a reduction in errors, (McCulloch et al, 2016). In their conclusion they stated that the evidence for clinicians or technical benefit from the teamwork training in health to be weak. There was evidence of beneficial attributes from the studies that included extensive training sessions, but a higher quality research and cost‐benefit analysis would be required for more substantial evidence, (McCulloch et al, 2016). This supports the premise that by staff attending training not only boosts their skills and confidence in practice, but can empower healthcare staff and therefore enhance their performance, however, it is difficult to fully evaluate the true effectiveness of training programmes and more research needs to be conducted in this area.

From the information obtained, the evidence primarily supports the innovation to devise and deliver an awareness training about diagnostic overshadowing and offering better support to adults with learning disabilities, tailored to be department specific for healthcare staff in acute hospital services. Even though more research is required to be undertaken about measuring the effectiveness of staff training; it strongly leans towards supporting the correlation between staff learning and better-quality care being provided.

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First published on this site in 2020.