Margaret Sowney and Michael Brown

Chapter Contents

Introduction

There is an increasing recognition of the need to respond to and meet the health needs of vulnerable groups within society. There are a range of people who may, for a variety of reasons, be vulnerable; this includes people with learning disabilities, children, people with mental health problems, people with acquired brain injury, some older people and those with dementia. Nurses who work in emergency care are often the first point of contact with healthcare services for patients and they are in a good position to ensure that the needs of vulnerable patients are appropriately assessed and responded to in a person-centred way. In order to respond appropriately it is necessary for these nurses to have an understanding and overview of the key health and care needs of vulnerable patients. This knowledge and understanding is important, as needs are often different and distinct, requiring specific responses and actions.

People with learning disability in society

People with learning disabilities are an integral part of society and need to be recognized and valued as equal citizens. It is estimated that as a group they form almost 2 % of the overall population across the UK, totaling some 1.5 million people. It is further estimated that prevalence rates per thousand of the general population indicate that there are 3 to 4 persons with severe learning disabilities and 25 to 30 with milder learning disabilities. The population of people with learning disabilities is ageing and increasing (Tyler et al. 2007). As a consequence, nurses working in emergency care settings will come into contact with more of this group of people in the future; hence the need for core knowledge and skills.

Across the world a range of definitions are used when referring to this population. The term learning disability has been adopted within the UK and refers to people with cognitive impairments that impact significantly upon their development, which in turn may affect the ability of some to live independently. Other terms used across the world include developmental disability, mental handicap and mental retardation. Increasingly the term intellectual disability is being adopted; however, irrespective of the current terminology used it is generally agreed that the term learning disability relates to:

A learning disability is a disorder that covers a spectrum of the population and is frequently referred to as mild, moderate, severe or profound. The level of cognitive impairment increases with the severity of learning disability, thereby affecting a person’s ability to understand new or complex information, learn and develop skills and use them independently. In order to be considered as a learning disability it is generally accepted that the disorder usually occurs on or around the time of birth and certainly before the age of 18.

There is a wide range of causes that result in the development of a learning disability. These can be conceptualized as occurring in the prenatal (prior to birth), perinatal (during birth), and postnatal (following birth) periods.

Changing policy and legislative directions

The four countries of the UK all have clear policy frameworks regarding the care and support of people with learning disabilities:

Collectively these policies are seeking to bring about change and improvement in the lives of children, adults and older people with learning disabilities that support and enable them to contribute as equal and valued members of society. These changes and developments are important, as people with learning disabilities have not always been valued and respected. Today, however, there is a clear shift in focus for the care and support of this group towards community inclusion, which has brought about the closure of long-stay institutions across the country (Scottish Executive 2003).

In addition to the clear policy frameworks that have been developed, there are specific pieces of legislation that are particularly relevant that impact on the lives of people with learning disability. Across the UK, the Disability Discrimination Act (1995) is particularly significant as this legislation makes it explicitly illegal to discriminate against a person with a disability, including those with learning disabilities. The Act requires all public services, including health services, to make a reasonable adjustment to enable people with disabilities to access services. In 2006, the Disability Equality Duty came into force in England, Wales and Scotland making it a requirement of public services, such as health and social care services to ensure that all people with disabilities, including those with learning disabilities, are treated equally and fairly. In 2011 the Equality Act (2010) came into force in England, Wales and Scotland to eliminate unlawful discrimination, harassment and victimization and other conduct prohibited by the Act.

Also of significance is the Human Rights Act (1998); it is relevant from a number of perspectives. The Act contains articles that seek to protect the rights of citizens in areas such as the right to life, the right to marriage, the right to freedom of expression and the right to freedom from discriminating and humiliating treatment. It is important that healthcare professionals in emergency care have an understanding of the implications and potential impact on their practice and care. The House of Lords and House of Commons published the findings of their independent inquiry that highlighted that the human rights of people with learning disabilities are not always respected when receiving healthcare (House of Lords & House of Commons 2008).

As a result of cognitive impairment some people with learning disabilities may experience capacity difficulties that impact upon their ability to make decisions about certain aspects of their life. Healthcare procedures and treatments can have important implications for a patient and there may be particular difficulties for some people with learning disabilities regarding their comprehension and understanding and as a result their capacity to give informed consent (Cummings 2012). In Scotland the Adults with Incapacity (Scotland) Act (2000) provides a clear framework to support people with capacity issues, including people with learning disabilities and in England and Wales the Mental Capacity Act (2005) provides a clear statutory framework to protect vulnerable people, including those with learning disabilities, who are not able to make their own decisions. The Act sets out who can make decisions and in what situations and what they need to do to comply. The Act sets out the presumption of capacity and the right of all individuals to make decisions about their care, the right to receive support in making decisions, the right to make decisions, even when they may seem unwise, that all actions must be in the best interest of the patients and that all interventions must be the least restrictive. It is therefore a requirement of their professional practice that all clinicians have a clear understanding of the legal frameworks in place to ensure the rights of people with learning disabilities are protected and their needs addressed.

The health profile of people with learning disabilities

As a group, people with learning disabilities have a differing health profile when compared to the general population and as a result particular responses are required. Additionally they have higher health needs, many of which frequently go unrecognized and unmet. This has a significant impact on their health and well-being and contributes to their need to access healthcare services and to premature death.

The health needs of people with learning disabilities can be complex and bring many into contact with all aspects of the healthcare system. For some their need for ongoing healthcare will be life-long in order to manage and limit the consequences of a range of chronic health conditions found within this population (Jansen et al. 2005, Van Schronjenstein et al. 2008). There are a range of health issues experienced by this group that frequently require them to access emergency care services, and therefore all nurses require an overview and understanding of the care needs, not only those who work in specialist services (Janicki et al. 2002, Scottish Executive 2002, Balogh et al. 2005). Fifty per cent of people with learning disabilities who present at ED are subsequently admitted, a proportion considerably higher than the 31 % of people without such disabilities who are admitted after presentation (Blair 2012, Emerson et al. 2012).

People with learning disabilities have the same everyday health needs as the general population, such as requiring treatment, investigation and management of conditions like asthma and diabetes (NHS Health Scotland 2004). The notion of everyday health needs includes access to emergency care services, as people with learning disabilities experience accidents and trauma as do the general population (Alborz et al. 2005). Collectively therefore nurses in emergency care will encounter people with learning disabilities and need to be able to respond appropriately, yet many report feeling poorly prepared to meet the needs of this group (30 McConkey & Truesdale, 2000 Iacono & Davis, 2 003, Sowney & Barr 2006a, Gibbs et al., 491 492).

It is relevant to reflect on healthcare education programmes, where it is clear that few health care professionals have received any significant education or clinical experience in assessing and meeting the distinct health needs of this population and as a consequence they lack confidence in providing care. It is therefore apparent that many healthcare professionals, including nurses in emergency care, are not well prepared to respond effectively to this group of patients (Brown 2005). It is not, however, acceptable to fail to respond due to a lack of confidence and experience, and the role of continuing practice development and education programmes is important and all should incorporate a focus on the needs of people with learning disabilities (NHS Education for Scotland 2004a).

An evolving evidence base of health needs

As a result of the overall improvements in health experienced by the general population, people with learning disabilities are living longer and into older age. Previously their life expectancy was significantly shorter. Now there is a new phenomenon, with more living on into older age, meaning there will be more people with learning disability in the future, many with complex care needs (Glasson et al. 2002, Carling-Jenkins et al. 2012). This will mean that nurses in emergency care will see the full spectrum of people with learning disabilities, from those with a mild learning disability through to those with highly complex physical and mental disabilities related to old age.

Communication is the number one ranked problem experienced across the spectrum of the learning disability population. They experience a high prevalence of difficulty with comprehension, expression and pragmatic communication (UK Parliament 2008). Additionally, paid carers frequently overestimate their communication abilities. This overestimation is an important issue that needs to be taken into account when emergency nurses are undertaking patient assessments, where they may rely on a carer for additional information and background about the person with learning disabilities. Merrifield (2011) argues that the assumption should not be made that because a person has poor or limited verbal speech, they are unable to understand what is being said to them.

People with learning disabilities experience higher prevalence rates of sensory impairment when compared with the general population. It is estimated that there is a 4 % prevalence of visual problems experienced by people with a mild learning disability under 50 years old in comparison to 2–7 % in the general population; the level of visual impairment increases with the level of learning disability. There is a 21 % prevalence rate of hearing impairment being experienced by those with mild learning disabilities less than 50 years in comparison with 0.2–1.9 % in the general population (Evenhuis et al. 2001). There is also a higher prevalence of hearing disorders in people with severe learning disability. These issues are particularly prevalent in people who have very severe learning disabilities and are frequently associated with a range of other health needs such as epilepsy, gastric disorders, cerebral palsy, hydrocephalus, respiratory disorders and immobility. Many will require tube feeding, increasingly via PEG tubes, some may need ventilation and routine suctioning, while others may have valves and shunts inserted due to blockage in the circulation of cerebrospinal fluid. Their presence needs to be considered when undertaking assessment in emergency departments.

Respiratory disease is the commonest cause of death in this population and is associated with pneumonia, often secondary to swallowing and aspiration problems (Hollins et al. 1998). In contrast to the general population, cardiovascular disease is the second commonest cause of death within this population. Cardiac abnormalities are a feature of specific syndromes such as Down syndrome, and ongoing investigation, treatment and monitoring are required for such persons (Hollins et al. 1998). People with learning disabilities experience higher rates of gastric problems, including gastric oesophageal reflux disorder (GORD), oesophagitis and Helicobacter pylori infection. Complications can result from these problems and investigation and treatment are indicated (Böhmer et al. 2000, Merrifield 2011).

Constipation is an important and frequent problem experienced by a significant number of people with learning disabilities, particularly those with severe learning disabilities, and is an issue that may bring some into contact with emergency services, yet it can be overlooked. Those most at risk are those with mobility problems, poor diets and fluid intake combined with medication for epilepsy and gastric problems (Böhmer et al. 2001). Assessment and diagnosis can prove challenging and patients with learning disabilities who are constipated may exhibit challenging behaviours due to their abdominal pain and discomfort.

People with learning disabilities experience a different pattern of cancer when compared to the general population. Gastric, oesophagus and gall bladder cancer are more prevalent in this population and there are higher levels of leukaemia experienced by people with Down syndrome (Hasle et al. 2000, Patja et al. 2001).

Within the learning disability population there are high rates of tooth and gum disease and an increased use of anaesthetics for examinations and treatment (Cumella et al. 2000). It is important for nurses undertaking assessments with people with learning disabilities to look beyond what may appear to be challenging behaviours, as closer review may indicate pain and distress associated with dental problems and this is an issue that needs to be excluded.

Epilepsy is extremely common in the learning disability population, with some 10–20 % of people with mild learning disabilities experiencing seizures, moving to over 50 % in those with severe and complex learning disabilities. This is in comparison with some 1 % of the general population. The epilepsy presentation within the learning disability population is more complex than that experienced by the general population and there are higher levels of polypharmacy, complex seizure types and sudden unexplained death as a result of seizures (Sillanpaa et al. 1999). As a consequence of seizures, people with learning disabilities may require emergency treatment of status epilepticus, while some will experience injury and trauma that will also require attention from emergency care services.

As with the general population people with learning disabilities experience accidents and orthopaedic problems associated with falls that will bring them into contact with emergency nurses. It is now recognized that women with learning disabilities have higher rates of osteoporosis and associated fractures. Additionally, as a result of mobility, balance and gait problems people with learning disabilities experience accidents and fractures that are linked to their premature death (Center et al. 1998).

While there is an increasing recognition of the sexual health needs of people with learning disabilities, this is in an area requiring a higher focus. People with learning disabilities can be victims of sexual abuse, with an associated impact on their sexual healthcare. Additionally women with learning disabilities have a low uptake of cervical and breast-screening programmes targeted at the general population (Brown et al. 1995, Hollins & Perez 2000).

People with learning disabilities have a higher prevalence of psychiatric ill health and, as with their physical health needs, their mental health pattern differs when compared to the general population. This point is significant when linked with the communication difficulties that may be present and is an important factor that needs to be considered by emergency nurses when undertaking patient assessment. People with learning disabilities have a higher prevalence rate of schizophrenia, 3 % compared with 1 % in the general adult population (Lund 1985, Doody et al. 1998). Furthermore, depression was found in 22 % of people with learning disabilities compared with 5.5 % in the general adult population (Richards et al. 2001). Anxiety and panic disorders are common in the general population and are also experienced by people with learning disabilities of all ages, although the disorder may fail to be recognized in this population and be considered to be challenging behaviour, thereby affecting diagnosis and treatment (Patel et al. 1993, Moss et al. 2000).

Emergency nurses will be familiar with patients who self-injure. Self-injury is found in the learning disability population and is associated with autism, IQ, level of immobility and hearing difficulties. Prevalence rates of self-injury have been found to be as high as 17.4 % in this population, with some 1.7 % being of a severe and sustained nature (Collacott et al. 1998). Dementia is found in higher rates within the learning disability population and occurs at an earlier age. It is particularly common within people with Down syndrome (Patel et al. 1993, Holland 2000).

Autistic spectrum disorder is a life-long disability that affects the way a person communicates and relates to others around them. People with autism also experience problems and difficulties with social interaction as well as having altered capacity to understand emotional expressions. Autism may be associated with learning disabilities; however, it is important to recognize that autism covers a spectrum. Not all people with autism also have a learning disability. It is estimated that there are some 60 per 10 000 population of children with autistic spectrum disorder, though data are currently not available for the prevalence within the adult population. People with autistic spectrum disorder present with a range of additional health needs, including mental health, communication, epilepsy and some may experience problem behaviours (Medical Research Council 2001, Public Health Institute of Scotland 2001).

People with learning disabilities as health service users

People with learning disabilities are high users of all aspects of health services. Yet when compared with the general population their care episodes are shorter. Mencap (2004) suggest that on average 14 % of the general population will require general hospital services: this is in comparison to 26 % of people with learning disabilities. Therefore it becomes evident that all nurses irrespective of the clinical focus of their role will come into contact with people with learning disability as a result of their health needs and the need to access health services. This contact is also likely to increase, as people with learning disabilities are now living longer and into old age, resulting in them also developing health needs associated with older age.

As a result of their health profile people with learning disabilities will come into contact with emergency services. However, their opportunity to access quality healthcare is dependent in part on emergency nurses’ ability and willingness to learn and respond appropriately to their communication patterns, the number one ranked problem experienced by this population. The challenge then for nurses within this fast-moving environment is to find ways in which the needs of people with learning disabilities are both identified and met in equity with others who access the service.

Reducing challenges in accessing services

The challenges in accessing health services and the impact of poor-quality care that potentially lead to poor outcomes for individuals was highlighted more recently in the document ‘Death by Indifference’ following the deaths of six people with learning disability in general hospitals (Mencap 2007). In response to this report an independent inquiry into access to healthcare by this population was undertaken by Sir Jonathan Michael in 2007. The subsequent Michael Report (Department of Health 2008) found that despite clear legislation related to equality of treatment, people with learning disabilities continue to have both unmet health needs and they receive a poorer quality of health treatment. The Joint Committee on Human Rights in their report on the Human Rights of people with learning disabilities highlighted that although the key principles such as human rights, dignity, respect, autonomy, and equality should apply to all, they are often breached in relation to meeting the needs of people with learning disabilities (UK Parliament 2008). The Michael Report also suggests that there is evidence indicating that both morbidity and deaths in this population could be avoided and made a number of recommendations to improve the care of people with learning disabilities (Department of Health 2008). A follow-up on the progress to improving access to healthcare for people with learning disabilities (Parliamentary and Health Services Ombudsman 2009) recommended that NHS and social care organizations in England urgently review the quality of their service in meeting the needs of people with learning disabilities. In addition the Ombudsman’s report placed the onus on the regulators of health and social care services to monitor adherence to both statutory and regulatory requirements. Furthermore the implementation and monitoring of the recommendations should be undertaken by the Department of Health, within 18 months of the report’s publication (Parliamentary and Health Services Ombudsman 2009).

Many of the negative experiences outlined by people with learning disabilities and their families of being in general hospitals are associated with poor communication (Gibbs et al 2008). Indeed ineffective communication was a common issue highlighted in the Death by Indifference document and failures in communication were highlighted in The Parliamentary and Health Ombudsman’s ‘Six Lives’ Report (Department of Health 2009). Communication is a basic human right and a fundamental principle central to inclusion within society. It is a two-way process and all people use a variety of means to communicate, including both verbal and non-verbal means. Yet within society there is a significant dependence on verbal communication, leaving those with reduced or no verbal skills at a significant disadvantage in interacting in the world around them (Arnold & Boggs 1999).

The Department of Health (1992) estimates that between 40 and 50 % of people with learning disabilities experience some degree of difficulty with communication, with sensory impairments being more common in this population. Evidence consistently shows that poor communication is one of the key barriers experienced by people with learning disabilities in accessing quality health and contributes to their poor care (Cumella & Martin 2000, PAMIS 2001, US Public Health Services 2002, Department of Health, Social Services and Public Safety 2004, Department of Health 2008).

For the healthcare professional, poor communication increases the challenges normally encountered in assessing the patient’s needs, informing them of their current health status and seeking and gaining valid consent, all of which are prerequisites in providing quality care. As attendance at emergency care is often unplanned, for people with learning disabilities being in an unfamiliar fast-moving environment can increase their feelings of fear and increase distress. Both the environmental and personal factors increase the risk of limited information exchange and as such increase the risk of harm to the patient (Department of Health, Social Services and Public Safety 2004, National Patient Safety Agency 2004).

Thus it is crucial that nurses within the emergency care settings develop a greater understanding of the communication difficulties experienced by people with intellectual disabilities, as a failure to communicate effectively can result in serious consequences. Primarily poor communication impacts on the nurse’s ability to conduct an appropriate assessment of the individual’s holistic needs, which in turn can have many negative consequences for the patient who has a learning disability, including:

Assessing needs

Currently there is little documented evidence available on the experience of people with learning disabilities of the emergency department, although this situation is gradually changing. Houghton (2001) suggests that this dearth of information within the emergency care literature may indicate a lack of awareness of emergency nurses regarding the health needs of people with learning disabilities. What is more concerning is a misconception that the needs of people with learning disability are not associated with emergency care (Sowney & Barr 2006b). This is an issue that requires to be challenged, as it is now accepted that general hospital services can present significant risk to the lives and health of people with learning disabilities. The National Patient Safety Agency state that:

The risk factors identified include a limited knowledge and understanding of the health needs, an increased prevalence and risk of dysphagia and aspiration pneumonia, barriers preventing equal access to healthcare, a lack of education and practice development opportunities, complex communication issues and misdiagnosis or no diagnosis. When these issues are considered in relation to the research evidence of the range of health needs experienced by people with learning disabilities and their communication issues and behavioural challenges, it is vital that nurses in emergency care recognize these risk factors, assess for them and plan and implement individual care; they have a legal and professional duty to do so (NHS Health Scotland 2004, Disability Rights Commission 2006, NHS Quality Improvement Scotland 2009).

Though the number of people with learning disabilities accessing emergency services is increasing, few organizations have systematic mechanisms in place to quantify their attendance. Whilst the absence of these figures may actually be seen as a positive step towards inclusion, nurses within emergency care frequently ask the question ‘how do we know if a person has a learning disability if there are no obvious signs?’ There is no guaranteed way of gaining this understanding, particularly if the person has a mild learning disability and does not wish anyone to be aware of this. However, there may be a few indicators of the presence of a learning disability, including:

It is important that the right of people to withhold this information is respected; however, if the emergency care nurse suspects that a person may have learning disability and may require some further support to aid their assessment, treatment and recovery, this understanding is then justified. During the patient assessment some broad general questions may then help clarify the situation, for example, ‘do you have any contact with health or social care professionals?’ and ‘do you receive visiting support at home?’ In addition, following the provision of information throughout the whole process (whether verbal or written) emergency nurses need to continually ask broad questions that will establish the patient’s current understanding.

While emergency nurses are skilled at carrying out a rapid assessment of needs, this process is not, however, as straightforward when the patient has a learning disability and communication difficulties and as such some further issues require consideration.

Hospitalization regardless of the time involved is known to cause stress, which is often demonstrated in people with learning disabilities by heightened emotional responses and behaviours. These emotional responses, including fear, insecurity or physical discomfort, can impact on the individual’s ability to express needs and understand information regarding their condition and their compliance with treatment. Although compliance is required for many of the interventions associated with examination, treatment and care, ineffective communication and inappropriate timing of interventions, particularly at the heightened emotional stage, can cause harm to the individual (Arnold & Boggs 1999).

People with learning disabilities often need more time to express their needs, particularly when they are ill, yet within emergency departments, where time is considered to be of the essence, affording extra time to encourage interaction is problematic (Walsh & Dolan 1999). In order to conduct the assessment safely the emergency nurse must afford more time to the process of triage (Houghton 2001), which may be up to four times more than that required for a person without such disabilities. The challenge for nurses is to find out how the individual communicates, then investigate ways in which they can best communicate with each other to gain the appropriate information required for the assessment, rather than apportion blame for ineffective communication with people with learning disabilities. In doing so, they can reduce the patient’s distress, fear and insecurities, whilst facilitating opportunities for the nurse to inform the patient, thus increasing compliance with examination, treatment or care (Boore 1978, Merrifield 2011).

Many people with learning disabilities who have little or no speech exhibit unusual behaviours as a way of communicating with others. Such behaviours can include rocking; head banging; increased flexion or extension and hypersensitivity to either sound or touch in their response to pain. However, as these messages are sent in a way that is quite different to what emergency nurses experience on a daily basis, there is a greater chance that these messages are misunderstood, being associated with learning disability and not a means of communicating a need. The danger in not understanding behavioural cues is a risk of diagnostic overshadowing and differential diagnoses.

An understanding of these two terms, diagnostic overshadowing and differential diagnosis, is particularly relevant in relation to assessing the health needs of people with learning disabilities. Diagnostic overshadowing occurs when clinicians, due to their limited knowledge and understanding of the differing presentations of illness in people with learning disabilities, assume that all clinical presentations and symptoms are as a result of the person’s learning disability, as opposed to considering other possible physical or psychological underlying reasons (Jopp & Keys 2001). Clearly the consequences of diagnostic overshadowing could be potentially fatal for some people with learning disabilities as their true underlying health need will not be identified and treated (Parliamentary and Health Services Ombudsman 2009). Furthermore the term differential diagnosis relates to the range of possible clinical diagnoses that may result from the patient’s history and from assessment and investigation (Reiss et al. 1982). In relation to people with learning disabilities where communication can be impaired there is an increased possibility that the range of differential diagnoses is not explored fully, and the potential seriousness of the condition going unrecognized – the problem of misdiagnosis is real and can have fatal consequences for persons with learning disabilities.

Thus, the assessment of healthcare needs, including pain, in people with learning disabilities can be very challenging. There may be the added issue of discriminating between what may be the distress of the patient in being in the emergency care situation and that of pain in emergency care settings. Nurses therefore need to assess levels of distress that may be experienced by patients with learning disability as well as pain and respond accordingly and the Disability Distress Assessment Tool is one example of an assessment that may assist (Regnard et al. 2007, Gates & Barr 2009). Pain presents in many ways and people have varying thresholds of pain; however, this is complicated further if the individual also has communication difficulties. Nonetheless, pain needs to be accurately assessed in people with learning disabilities through a comprehensive holistic approach informed by the use of appropriate pain assessment tools and where possible including information from a carer who is knowledgeable of the patient when well, thereby allowing a comparison with the presenting history. In addition to the knowledge of and skills in using various pain assessment tools the emergency care nurse also requires knowledge of how the perception of pain is verbalized and demonstrated in people with intellectual disabilities (Cumella & Martin 2000, Kerr & Wilkinson 2006, Kerr et al. 2006). Furthermore, the assessment of pain and the provision of adequate pain relief are also associated with the nurse’s attitudes. Consequently, if emergency nurses believe that people with learning disabilities experience pain differently to those who do not have learning disabilities, then the opportunity to receive appropriate pain relief is reduced, increasing the patient’s experience of stress, anxiety and fear. However, while pain is a subjective experience, the opportunity to be pain-free must be seen by emergency nurses as a patient’s priority.

The role of the families and carers in the assessment process is very important too, as they can provide essential support to the person with a learning disability, assisting them to express needs and make choices known. This is particularly so if the person has severe to profound learning disability with complex needs. Therefore it is both good practice and a duty of care for nurses within emergency care to work collaboratively with family members, demonstrating the value of their contribution, as well as showing a caring, respectful attitude towards the individual. Whilst the role of the carer in assisting with the provision of vital information cannot be underestimated, nurses are, however, responsible for using various skills to gain the information required to carry out a patient assessment, then to analyse the information, judging the value and worth (Sowney & Barr 2006b).

Involving people with learning disabilities

Involving people with learning disabilities in their care when they are acutely ill can be challenging. However, all patients need to be adequately informed of their health status to enable them to make informed decisions regarding their healthcare. Additionally the receipt of information in a format that is understood reduces fears and anxieties experienced by people with learning disabilities in acute general hospitals and increases opportunities for greater compliance and recovery. Evidence shows that informed people are better able to manage and cope with treatment and the effects of hospitalization and this is particularly important when working with vulnerable people.

People with learning disabilities may have difficulty understanding written information provided in general hospitals and frequently require the help of others to gain an understanding of the documents and their significance. Recent research on access to acute general hospitals has highlighted many areas of good practice within the emergency care environment in the development of various means of gaining and providing information to people with learning disabilities (NHS Quality Improvement Scotland 2006, Brown et al. 2010, MacArthur et al. 2010). This includes working guidelines and the development of more appropriate user-friendly leaflets and posters. Emergency nurses have an obligation to be aware of the good practice within their own area to facilitate good communication with people with learning disabilities.

Consent

It is impossible to consider communication difficulties experienced by people with learning disabilities without discussing the connection with the provision of valid consent. Central to the process of gaining valid consent is good communication; however, without the required information in a format that is clearly understood and accessible, people with learning disabilities remain passive in asserting control over their ability to self-determine and their own bodies.

The law recognizes the right of all adults to consent to examination, treatment and care and this includes people with a learning disability. Yet people with learning disabilities are often viewed by healthcare professionals as being incapable of making decisions and as such are frequently excluded from discussions and decisions regarding their healthcare (Mencap 2004, Hutchinson 2005, Sowney et al. 2006). Such false beliefs regarding the capacity to maintain control over their own bodies reduces opportunities for people with learning disabilities to be empowered, increasing their passivity in decision-making. Evidence shows that parents and other relatives are often asked to consent on behalf of an adult who has a learning disability, even though the law states that no one can give valid consent on behalf of another adult. It is therefore important to distinguish between consent and assent from a relative or carer. A relative or carer assenting and agreeing with a course of action is not valid consent.

In order to give valid consent, individuals must first have the ability to understand, maintain and judge information and in addition communicate a choice to others (Wong et al. 1999). The support mechanism of using the relative/carer to assist with explanations is good practice by nurses; however, no decisions should be made by the relatives or carers regarding the treatment or care that has not been the patient’s identified choice. Healthcare professionals have both a legal and professional responsibility to obtain valid consent prior to the commencement of any examination, treatment or care and have a responsibility to ensure people with learning disabilities are empowered to make healthcare decisions (Department of Health 2001c, Welsh Assembly 2002b, Department of Health, Social Services and Public Safety 2004, NHS Health Scotland 2004, Mental Capacity Act 2005, Disability Rights Commission 2006, Nursing and Midwifery Council 2008). In addition, many investigations and treatments may be required within the emergency care environment and nurses must appreciate that valid consent for one aspect of care does not cover all other aspects of care. In addition nurses need to remember that consent is ongoing, being context-dependent, in that a person may have capacity to consent at one time and not at another (Dye et al. 2004). If, however, there is concern from the health care professional about an individual’s capacity to consent this must be confirmed through a test of capacity.

In the absence of consent to examination, treatment and care within the emergency care environment, there is an increased risk of harm to the person with a learning disability from procedures being carried out by nurses without the full cooperation of the patient. Furthermore treatment without valid consent is unlawful. Similarly nursing staff can inadvertently cause harm through decisions not to act rather than to act, due to difficulties gaining valid consent (Barr 2004).

Emergency nurses need to be familiar with the issue of valid consent, having an understanding that both choice and control over healthcare decisions are key principles for all patients. In addition these aspects are central to the provision of inclusive services for people with learning disabilities (Department of Health 2001c, 2009, Welsh Assembly 2002b, Department of Health, Social Services and Public Safety 2004, NHS Health Scotland 2004, Mental Capacity Act 2005, Scottish Executive 2005). See Box 33.1.

Additional support models

The main focus of the work of emergency nurses is not with people with learning disabilities. However, they are a group who have significant health needs and have experienced institutional discrimination from healthcare professionals in the past (NHS Health Scotland 2004). While there are actions that can be taken by nurses in emergency care that will have a significant impact on the care experience of this group, there are times when people with learning disabilities require support beyond that which is available. Models of additional support are now being developed that see experienced learning disability nurses taking on liaison roles within general hospitals (Brown et al. 2005, 2010, Gibbs et al. 2008, MacArthur et al. 2010, Royal College of Nursing 2011). These liaison models help to ensure that those with the most complex of care needs receive appropriate care and support and help to create a partnership between patients, their carers, general hospital nurses and specialists in learning disability healthcare as well as providing education and practice development and contributing to strategic developments of general hospital services, thereby helping to ensure the needs of people with learning disabilities are met more effectively.

The focus of the liaison models is on preadmission planning and assessments, thereby helping to ensure the appropriate care arrangements are in place. Alternatively there may be communication, consent or diagnosis concerns and the liaison nurse is well placed to help problem-solve and make referrals onto other specialists in learning disability health services. These models of practice present also an opportunity for research collaborations to determine their impact on health outcomes (Brown et al. 2005, Guidelines and Audit Implementation Network 2010, MacArthur et al. 2010).

The UK is fortunate to have specialists in learning disability healthcare; however, this is not the case across the world. Frequently these specialists work as part of community learning disability teams and comprise a range of professionals, including learning disability nurses, speech and language therapists, occupational therapists, physiotherapists, dieticians, clinical psychologists and psychiatrists. Collectively they are a resource available to nurses and others in emergency care to assist in the assessment and identification of health needs, as well as providing specialist interventions and treatments to people with learning disabilities with complex needs. Today links are being established between emergency care professionals and specialist learning disability teams, with liaison nurses acting as the central coordinating point, thereby ensuring that the most appropriate care and support is available to this vulnerable group.

Conclusion

The learning disability population is increasing and ageing, with more living into older age with more complex health needs. Healthcare professionals in emergency care need to become familiar with the distinct needs of this group. As the evidence base of the health needs of people with learning disabilities evolves and is better understood, it becomes apparent that their health needs when compared to the general population are different. Failure to recognize and respond to their distinct pattern of health needs contributes to and results in their health inequalities that in turn contribute to premature death.

Central to effective care is the need to recognize the patterns of communication used by people with learning disabilities and the important role that relatives and carers can play in facilitating and enabling an accurate assessment and identification of needs. Models of additional support are being developed and it is incumbent on nurses within the emergency care environment to be aware of and communicate with specialist learning disability teams in order to reduce challenges in assessing and providing care to this vulnerable group.

References