Service Provision

People with learning disabilities often have problems accessing generic mental healthcare services there are many identifiable reasons for this. Within the recent White Paper Valuing People A New Strategy for Learning Disability for the 21st Century (Department of Health 2001), an emphasis has been placed on the mental health needs of people with learning disabilities' being met by generic services with specialist support from learning disability services. Firstly, it is important to establish...

Health Facilitation

Valuing People (Department of Health 2001a) clearly states the existence of inequalities in health and in healthcare delivery for adults with learning disabilities. It sets out guidance that incorporates key principles of rights, independence, choice and inclusion for adults with learning disabilities. The emphasis is very much on social inclusion, and this extends to the areas of health care and healthcare delivery. Adults with learning disabilities should expect to have the same support in...

Eugenics And Ethical Issues

History, unfortunately, for adults with learning disabilities is not the only barrier standing between them and their credible status as parents or potential parents. The science of genetics has impacted on society's tolerance towards people with learning disabilities by providing parents-to-be with a means to determine whether their unborn children with disabilities live or not. Parents-to-be can choose not to give birth to seriously disabled babies, as clarified in the Abortion Act 1967, in...

Current Position Of Adults With Learning Disabilities

The reality for many adults with learning disabilities is a life with limited choice, rights, independence or inclusion - the four key principles at the heart of Valuing People (Department of Health 2001b). This state of affairs puts many adults with learning disabilities in a vulnerable position, as they are dependent on family, carers and professionals to help them live their lives. This can lead to potential vulnerability, as an adult with a learning disability is reliant on the honesty,...

Care Philosophies

Historically, we have moved from a situation in which adults with learning disabilities were cared for within institutional settings, such as learning disability specialist hospitals, to people being cared for in the community (Gates 2003). Many adults with learning disabilities have been, and will continue to be, cared for at home. Our encounters with adults with learning disabilities as carers, support staff and students tend to focus on those people receiving a higher level of support within...

About the Editors

Ian Peate, EN(G) RN DipN (Lond) RNT BEd(Hons) MA(Lond) LLM Ian began his nursing a career in 1981 at Central Middlesex Hospital, becoming an Enrolled Nurse working in an intensive care unit. He later undertook three years' student nurse training at Central Middlesex and Northwick Park Hospitals, becoming a Staff Nurse then a Charge Nurse. He has worked in nurse education since 1989. His key areas of interest are nursing practice and theory, sexual health and HIV AIDS. He is currently Associate...

Antidiscriminatory Practice

Carers and students need to have a raised awareness of anti-discriminatory issues with regards to communication. This chapter started by outlining a basic model of communication and proceeded to explain the difficulties that may be encountered when interacting and communicating with adults with learning disabilities. There are also other influencing factors that could affect any communication with an adult with a learning disability from a discriminatory perspective. A cultural difference may...

Anxiety Disorders

Anxiety disorders are characterised by a persistent and sometimes overwhelming feeling of apprehension, accompanied by a range of physical and psychological symptoms (Priest & Gibbs 2004). In a lifetime, any given individual has a 5 per cent chance of suffering from an anxiety disorder. Anxiety disorders are normally considered in several different categories people with learning disability are more likely to suffer from three of these, which are obsessive-compulsive disorder (OCD),...

Assessing Challenging Behaviour

Adults with learning disabilities who have challenging behaviour present acute management problems. Families and carers are often highly stressed and there is a huge temptation to use medication as an intervention. The aim of an intervention is to create and sustain the conditions under which the individual is most likely to be able to function. Challenging behaviour is functional it may be an indication of physical discomfort, pain, emotional distress, mental illness or conflicts in the...

Assessment And Diagnoses

So far, it has been established that mental health is a major issue for people with learning disabilities and there are a large number of people with learning disabilities who suffer from a variety of mental health conditions. However, the true extent of the problem cannot be known, due to difficulties in assessment, and it is estimated that the actual numbers are far greater than those cited in this chapter. This is largely due to the service users being unable to sufficiently communicate...

Barriers To Accessing Health Care

In spite of recent legislation and advances in the provision of care, the evidence suggests that the healthcare needs of adults with learning disabilities are still not being fully met Adults with learning disabilities are much more likely to be obese than the general population. Less than 10 per cent of adults with learning disabilities eat a balanced diet, with an insufficient intake of fruit and vegetables and a lack of knowledge and choice about healthy eating. Less than 20 per cent of...

Provision Of Support

A steadily increasing number of parents with learning disabilities are being referred to social and health services for support and advice in parenting skills, although there are no reliable estimates of the number of parents with learning disabilities residing in Britain (Booth & Booth 1998). Added to this, more people with learning disabilities are experiencing greater opportunities to choose how they wish to live, since it has been officially acknowledged that they have the same rights as...

Conclusion

This chapter began by defining 'learning disability' and highlighting the importance of carers developing their awareness of potentially labelling a group of people because they have a particular area of need, i.e. learning disabilities. The government White Paper Valuing People A New Strategy for Learning Disability for the 21st Century (Department of Health 2001a) clearly sets the agenda for us, in offering appropriate and effective support for adults with learning disabilities in their...

Contemporary Society

It is estimated that there are over 800,000 people in the UK aged over 20 years who have a learning disability (Department of Health 2005a) putting this into context can help you to understand the needs of those whom you may need to provide care and support for, as well as the extent of the challenges. This number is expected to rise by 14 per cent to 900,000 by 2021. Furthermore, the number of those with severe learning disabilities may also rise by 1 per cent per year for the next 15 years...

Therapeutic Interventions

The term 'therapeutic intervention' refers to a planned action that has the intent to 'heal' or 'cure' (Gates 2003). There are many types of therapeutic interventions that are used to treat mental health problems in people with learning disabilities generally, they are similar to those for the non-learning disabled population, but some require modification to be successful. Therapies can be used in isolation or with each other an example of the main therapies used for people with learning...

Dedication

I would like to dedicate this book to the many adults with learning disabilities I have had the pleasure to meet and work with over the years, who have enriched my life and taught me patience, understanding and compassion. The students I have taught have given me hope for the future of learning disability nursing and continue to inspire me. I dedicate this text to all those who strive to ensure fairness in the delivery of healthcare for all members of society.

Defining A Learning Disability

Before discussing needs and support issues, it is important to try to define this group of people that we term as 'adults with learning disabilities'. On the surface, this may seem a simple task. However, reviewing the historical context of learning disability care reveals a variety of ways in which the term has been defined over time (Department of Health 2001a Gates 2003 Grant et al. 2005 O'Hara & Sperlinger 1997). In March 2001, the Government produced a White Paper entitled Valuing...

Defining Communication

This aspect of the chapter will provide general definitions and explanations of what communication is. Within this section, there will be a description of a fundamental model of communication. This will be explored further where appropriate in the other sections, thus setting the scene. The majority of work with adults with learning disabilities involves a considerable amount of communication in any given interaction. Therefore, it is important that an understanding of some of the main dynamics...

Dental

Most adults with Down's syndrome have a compromised immune system and are prone to general infections and have an extremely high incidence of teeth (periodontal), gum (gingival) and mouth (oral) infections. Mouth breathing is common, causing dry mouths (xerostomia). Hypotonia of the muscles associated with eating reduces the effectiveness of chewing (mastication) and with xerostomia can cause bad breath (halitosis). In adults with Down's syndrome, the teeth roots are shorter and less securely...

Discrimination And Diversity

Discriminatory beliefs about individuals can often be based on assumptions frequently derived from historical and cultural beliefs, passed on from generation to generation. Through this process, many discriminatory beliefs become enmeshed in society's infrastructure and can become acceptable and commendable or even lead to radical actions, like the termination of a foetus with a disability (legally accepted in the Abortion Act 1967). Discriminatory assumptions against people with learning...

Endings And Breaks In Communication Therapeutic Relationships

Unintentionally, communication with service users is perhaps not always ended or finished appropriately, such as walking away from service users without informing them of the reason behind this act, which might be as simple as forgetting to collect or bring something that is required for an activity, but was not communicated to the service users. You may know the exact reason for leaving, even if only briefly, but may have unintentionally not communicated this to the service users. They then...

Establishing Maintaining And Ending Therapeutic Relationships

The process of, and considerations for, effective communication with adults with learning disabilities will be discussed in Chapter 2 ('Communication and Adults with Learning Disabilities'). This section will explore key considerations and reflect on establishing, maintaining and ending therapeutic relationships. When thinking about our contact with another person, first impressions can be significant in setting the tone for building a rapport and relationship with that person in whatever...

Health Improvement Clinics

Healthcare professionals working with adults with learning disabilities have been increasingly concerned with their interface with primary and secondary health care over the last decade. Notably, the 'Survey of GPs' Views of Learning Disability Services' (Marshal et al. 1996) highlights the disappointing attitudes of GPs toward adults with learning disabilities who attempt to access a service from the Primary Care Trust. Our Healthier Nation (Department of Health 1998) acknowledges that adults...

Health Screening For People Who Have Learning Disabilities

Since the late 1980s, there have been numerous reports highlighting unmet health needs for people who have learning disabilities (Howells 1986). There is also evidence of the poor uptake of screening services nationally (Whitfield et al. 1996). Women who have learning disabilities are less likely to undergo cervical smear tests than the general population - 19 compared with 77 per cent (Djuretic et al. 1999) - and, despite a 90 per cent attendance rate at mammography clinics, are less likely to...

Issues Of Diversity Culture And The Needs Of Older People With Learning Disabilities

'People with learning disabilities from minority ethnic communities are at particular risk of discrimination in gaining access to appropriate healthcare. . . . Staff who understand the values and concerns of minority ethnic communities and who can communicate effectively with them have an important role to play in ensuring that minority ethnic communities can access the healthcare they need.' (Department of Health 2001a, pp. 62-3) The Government clearly outlines the necessity to profile...

Key Terms

The choice of terms used in this text is diverse. It is important to define terms from the beginning different terms may mean different things to different people. There are a variety of terms that can be used to describe people with learning disabilities. The use of any term has the ability to label the person to whom the term is being applied. Labelling may lead to prejudice and discrimination, and can result in stigmatisation. Stigma is powerful and can have negative consequences for an...

Parenting

Traditionally, the role of a parent is seen predominately as an adult one, not suited to children. So, for people with learning disabilities, the discriminatory connotations associated with their being child-like can be further complicated by beliefs that it is not appropriate for children to take on a parenting role. Reder et al. (2000) saw parenthood as 'Not an activity which sits comfortably within the paradigm of childhood as constitutes the child's appropriate role and place in the adult...

Prevalence And Causation Of Mental Health Problems In People With Learning Disabilities

The mental health needs of people with learning disabilities have only been on the learning disability healthcare agenda for the past 15-20 years. Reid (1994) suggests that historically it was thought that people with learning disabilities did not have the intellectual or cognitive ability to suffer from a mental health disorder. Any noticeable changes in their behaviour were interpreted as part of their learning disability and, on the unusual occasion that signs of mental illness were noted,...

Prevalence

One single seizure does not constitute epilepsy. The term 'epilepsy' may be properly used if an adult has a tendency to experience repeated seizures due to an intrinsic disturbance of neuronal functions within the brain. However, it must be noted that epilepsy is not a single condition, and it will affect people in different ways. Epilepsy is the most common neurological disorder, affecting people of all ages. At least one in 20 people will have one seizure during their lifetime 'At any one...

Respiratory Disorders

Respiratory disorders are common in adults with Down's syndrome, with the underlying pathology often multifactorial. Structural and functional anomalies such as hypotonia and small lower airway volume can, for example, combine with cardiac defects, excessive mucus secretion and collection in the upper airways to confound accurate diagnosis. As with many adults with learning disabilities, especially those living within communal settings, gastro-oesophageal reflux (GORD) caused by the bacterium...

Some Tips For Caring For Adults With Learning Disabilities And Challenging Behaviour

Challenging behaviour is any behaviour that interferes with the adult with a learning disability's learning development and success in daily routines or activities is harmful to the adult with a learning disability and other people or puts the adult with a learning disability at high risk for later problems and failures. Caring for an adult with a learning disability with challenging behaviour is a challenge in its own right - but it is one that carers can overcome with the appropriate...

Summary Of Challenging Behaviour

When dealing with challenging behaviour, it is important to recognise the range of behaviours which challenge services, and the effect that these behaviours have on both adults with learning disabilities and those who support them. These behaviours have causes, many of which are identifiable and many of which are related to either the adult with learning disability's needs or the adult with a learning disability being unable to communicate his her needs effectively. Careful and comprehensive...

The Chapters

It is impossible to discuss all elements of health and social care related to the person with a learning disability. We have arranged the chapters in such a manner as to provide you with some insight into the intricacies associated with the care and support that may be required by an individual who has a learning disability. Primarily, we aim to provide you with the essence of care and a fundamental understanding of some of the issues that may impinge on a person's well-being. Central to...

The Human Rights Act 1998

Introduced in to the United Kingdom in October 2000, the Human Rights Act 1998 did not actually create any new rights for individuals. Nor did it specifically refer to people with learning disabilities. So why is it important Well, the Human Rights Act enshrined within UK legislation, for the very first time, the articles and protocols found in the European Convention on Human Rights. Quite simply, following the introduction of the act, all UK legislation such as any amendment to the Mental...

The Historical Perspective

Historically, in England, there were two main themes underpinning society's attitude towards people with learning disabilities one in which they were seen as innocent and in need of protection and one in which they were seen as ignorant, irresponsible and promiscuous and, without proper control, could be a danger to society. The idea that adults with learning disabilities were child-like and naive and described as 'innocents', with the inability to develop their mental capacities beyond those...

The Legislation

People with learning disabilities are, for the most part, subject to the same laws as every other member of society. There are, however, several pieces of legislation that are of particular interest to people with learning disabilities and their carers. Throughout this chapter, four key pieces of legislation that reflect society's current perceptions of people with learning disabilities will be explored. This exploration will, by necessity, be quite brief an in-depth exploration of the...

Understanding Challenging Behaviour

Frameworks for understanding challenging behaviour have become more sophisticated over time, with important implications for assessment and intervention practices. These frameworks will be illustrated and their implications considered. An example of the assessment and intervention planning process will be illustrated. It is well recognised that 'demands' often set off challenging behaviour. If an adult with a learning disability is asked to wash the floor, s he may become aggressive. This often...

Vulnerable Victims Of Crime

The Criminal Justice and Court Services Act 2000 requires the National Probation Service to make contact with victims who have experienced a violent or sexual crime, for which the offender received a custodial sentence of a year or more. The purpose is to inform the victim about the sentence, and to establish whether s he wishes to receive further contact from the Probation Service and whether s he wishes to be informed when the prisoner is due for release. Research suggests that where these...

Women And Aeds

There are particular considerations that need to be taken into account when supporting women with learning disabilities who have epilepsy. Women with learning disabilities should not be excluded from the same services available to all women, but information may need to be modified in order to meet their needs. The issue of contraception needs to be considered carefully with women of child-bearing age. Non-hormonal contraception methods have no side effects for women with epilepsy. It needs to...

Learning Disabilities References

Ambelas, A. (1987) 'Life Events and Mania A Special Relationship ', British Journal of Psychiatry, 150 135-246. American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders - DSM-IV, Washington, American Psychiatric Association. American Psychiatric Association (2000) Diagnostic and Statistical Manual of Mental Disorders - DSM-IV-TR (Text Revised), Washington, American Psychiatric Association. Birch, H., Richardson, S. & Baird, D. (1970) Mental Subnormality...

Mental Capacity Act 2005

The latest and quite possibly most controversial piece of legislation that relates to people with learning disabilities is the Mental Capacity Act 2005. The Mental Incapacity Bill, as it was originally known, received Royal Assent in April 2005 and is expected to come into force in England and Wales in 2007. (Scotland has its own Adults with Incapacity Act 2000.) When it does come into force, it will affect everyone over the age of 16 years whose mental capacity is in doubt, and those who care...

Personcentred Planning

Until the 1950s, the idea that adults with learning disabilities' had unique individual needs and rights was unheard of. Since that time, significant conceptual ideas have influenced policy development and subsequently changed the way in which services are delivered for adults with learning disabilities. It is valuable to briefly explore the journey and progression of thinking that have moved ideas from this custodial climate to one of more personal power control and inclusion. The development...

National Patient Safety Agency

The National Patient Safety Agency (NPSA) has, in recent times, published its report outlining key patient safety issues in relation to the quality of care of adults with learning disabilities in a number of areas, including physical restraint (NPSA 2004). The focus of this section concerns the 'vulnerability of people with learning disabilities in general hospitals'. One of the problems it highlights concerns the 'degree of harm' that adults with learning disabilities may come across as...

Caring For Children

The discussion above may be the result of the implementation of the Children Act 1989, in which a greater emphasis has been placed on the protection of children who are considered vulnerable and are consequently being placed on the 'At Risk Register'. This legally requires that 'The register should list all the children resident in the area who are considered to be at continuing risk of significant harm and for whom there is a child protection plan.' The local authorities have the statutory...

Challenging Behaviour

Moss et al. (2000) found that there was a strong relationship between mental illness and people with learning disabilities who present 'challenging behaviours' (for a fuller discussion of challenging behaviour, see Chapter 3). Their study showed that mental illness was twice as prevalent in those with challenging behaviours as those without. Depression and anxiety were the most prevalent with those described as having challenging behaviour. Confusion and fear can often turn into anger and...

Arthritisarthropathy

Arthritis refers to the inflammation of a joint which causes pain and swelling of the joint. Arthropathy refers to non-inflammatory disease of a joint, which may have many different causes. There certainly is a higher incidence of joint problems in adults with Down's syndrome, but whether or not there is an increase in the incidence of auto-immune arthritis (such as juvenile rheumatoid arthritis, or JRA) is still being debated in the medical community. One researcher recommended a new condition...

Protection Of Vulnerable Adults With Learning Disabilities

In recent years, there has been growing recognition that adults with learning disabilities, and those who have a mental illness or who are old and frail, need protection from potentially abusive situations over which they may have little control. In light of this, following on from the consultation publication of No Secrets (Department of Health 2000), the 'Protection of Vulnerable Adults Scheme in England and Wales for Care Homes and Domiciliary Care Agencies' was implemented by the Department...

Classification Of Seizures

All classifications are based on the international classification of seizures (Dreifuss 1989). GENERALISED SEIZURES Tonic-clonic (previously known as 'grand mal') The person becomes rigid, and may fall if standing. The muscles relax and then tighten rhythmically, causing the person to convulse. The breathing becomes laboured and the person may also become incontinent. There is a brief period of unconsciousness and, on waking, the person may be tired and confused and have a headache. 98 PEOPLE...

Psychotropic Medication

The most prevalent form of intervention remains medication psychiatric drugs are used in the treatment of all forms of mental illness and there is a strong evidence base to support its appropriate use (Gates 2003 Hardy & Bouras 2002 Pilgrim 2005). There is also evidence to support the use of these drugs for behaviour problems that are not necessarily connected to a mental health problem with people with learning disabilities (Crabbe 1994). For this reason, it is virtually unheard of for a...

Skin Conditions

Atopic dermatitis is the presence of red, scaly, itchy skin. It is most likely to appear on the cheeks, behind the ears, behind the knees and in the elbow creases. Treatment is with steroid creams and oral antihistamines. This is an irritating condition, which needs to be managed by carers to prevent pain and discomfort for those individuals affected. Seborrhea is a similar condition, but usually greasy and scaly, and appearing on the scalp and eyebrows. Dandruff shampoos or shampoos with...

Concluding Comments On Challenging Behaviour

When dealing with challenging behaviour, it is important to recognise the range of behaviours which challenge services, and the effect that these behaviours have on both adults with learning disabilities and those who support them. Bear in mind that behaviours have causes, many of which are identifiable and many of which are related to either the needs of adults with learning disabilities or their inability to communicate these needs effectively. Careful and comprehensive assessment of the...

Antiepileptic Drugs

Anti-epileptic drugs (AEDs) are the preference for the treatment of epilepsy. These AEDs will control seizures for most people with epilepsy, but there will be a minority of people for whom these AEDs are less effective. AEDs are effective in stabilising the electrical brain activity that causes seizures, particularly if the cause is idiopathic. AEDs do not provide a cure for epilepsy, but enable the majority of people to live without the fear of having seizures. As a student or carer of an...

Verbal And Nonverbal Communication

The importance of verbal and non-verbal communication will be explored here. There will also be an explanation of language. However, the emphasis within this section will be with regard to non-verbal communication and adults with significant disabilities, i.e. the importance of 'levelling' when working with adults who use wheelchairs and listening (observationally) with the eyes as well as the ears. This is often referred to as 'active listening' (Thompson 2003). This section aims to highlight...

Contributors

Frank Garvey, RNMH, RGN, RNT, BA (Hons), Cert Ed, Cert Health Ed Frank has worked in the fields of learning disability and general nursing for 25 years. Within that time he has been a charge nurse a respite care home manager for children with complex medical needs and learning disabilities a community learning disabilities nurse and a university senior lecturer involved in the education of nurses and social workers. He is particularly interested in the physical healthcare of people with...

Attitudinal Barriers

Adults with learning disabilities are a marginalised group within society, and, unfortunately, this is reflected in attitudes expressed by professional health and social care staff. Shanley and Guest (1995) highlighted that adults with learning disabilities are stigmatised by adult nurses. Slevin and Sines (1996) reported that adult nurses showed an unenthusiastic attitude towards people with learning disabilities. This may be explained, in part, by their lack of exposure to adults with...

The Legal Framework For Protecting Vulnerable Adults

The regulations relating to the ill-treatment of vulnerable adults with learning disabilities are often complex and not always easy to understand. However, laws are in place which can be used either to protect vulnerable adults or to act on their behalf if a crime or offence has been committed against them. It does require carers, students and professionals to have some knowledge of the law and knowledge of whom to contact for further assistance. If a criminal offence is suspected, it should...

Thyroid Disorders

Thyroid dysfunction is common in adults with Down's syndrome, with a steady decline in thyroid function increasing with age. Both hypo- and hyper-thyroidism can occur in adults with Down's syndrome, although hypothyroid-ism is much more common and often caused through an autoimmune process whereby the immunological defence system targets its own body tissues and organs. Hypothyroidism is caused by a deficiency of thyroxine - a naturally occurring hormone, secreted by the thyroid gland. It is...

Musculoskeletal Disorders

Almost all of the conditions that affect the bones and joints of adults with Down's syndrome arise from the abnormal collagen found in adults with Down's syndrome. Collagen is the major protein that makes up ligaments, tendons, cartilage, bone and the support structure of the skin. One type of collagen type VI is encoded by a gene found on the 21st chromosome. The effect in adults with Down's syndrome is increased laxity, or looseness, of the ligaments that attach bone to bone and muscle to...

The Disability Discrimination Act 1995

Imagine a world in which the bar staff in a pub shouted 'I don't want your kind in here' as soon as you walked through the door, in which your local cinema barred you because you were a 'health hazard' and large stores turned you away because 'seeing you would upset their regular customers'. Now imagine that there is absolutely nothing you can do about it. You cannot retort 'I know my rights' because you don't have any. You cannot take legal action because no offence has been committed. There...