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).