Regardless of the above mentioned fact, a large majority of the population, in the UK continues to suffer from blatant neglect in terms of receiving quality health care. Although there are various services offered by the government at various levels to ensure proper care of patients, the more psychological and moral aspects of ‘care for the soul’ and ‘dignity in health care’ are usually ignored. This paper, aims to probe the various issues related to the element of ‘dignity’ as it pertains to provision of health care of people suffering from learning disabilities, and explores the range of services available to them, at various stages of life, from birth till death. People with Learning Disabilities are one of the most Vulnerable groups in the society (Department of Health 2001). It is estimate that there are over 800,000 people in the UK aged over 20 years who have a learning disabilities and this number could be rise by 14 percent to 900,000 by 2021 (Department of Health 2005a). Dignity in care has become an important policy thrust for the people with learning disability and it’s a fairly recent trend for governments to feel that it is their role to enlighten people how to do their job rather than just set broad guidelines/policy parameters for the Health and social service (Wainwright. 2008)
Meaning and Definition of the terms and Concepts used:
The terms and / or concepts which are frequently used throughout this study, such as ‘Dignity’, ‘Learning Disability’, and ‘Disenfranchised Death’, are explained in the following section:
The term Dignity is defined as:
“Dignity is concerned with how people feel, think and behave in relation to the worth or value of themselves and others. To treat someone with dignity is to treat them as being of worth, in a way that is respectful of them as valued individuals” (RCN, 2008).
Dignity in care consists of numerous overlapping phases which pertaining to respect, privacy, independence and self-esteem. The impermanent sense of dignity used as a guide which based on standard dictionary definition.
“At state, quality or manner worthy of esteem or respect ; and self-respect. Dignity in care, therefore, means the kind of care, in any setting, which supports and promotes, and does not undermine, a person’s self-respect regardless of any difference.” (A desk research report prepared for the Department of Health 2009):
Learning Disability: In the UK in 1995 there was a ground swell of opinion and referred to as ‘mentally handicapped’ their families and those who worked with them, brought about a change in terminology from mental handicapped to learning disability(M.Brown-2003).
Learning disability includes the presence of:
A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning); and a condition which started before adulthood, with a lasting effect on development (Scottish Executive, 2010).
‘Disenfranchised death is death that is not openly acknowledged with the dying person, where the dying person is socially excluded from the process of dying and deliberately excluded from the decision making processesaˆ¦’ (Read, 2006: 96)
However, reviewing different context of learning disability care reveals a variety of ways in which the term has been defined several times (Department of Health 2001a, Gates 2003,Grant et al 2005, O’ Hara & Sperlinger 1997). Within the United Kingd??m le?°rning diN•?°bility iN• the term uN•ed when referring t?? Nˆe??Nˆle with N???gnitive imNˆ?°irment. ??r??und the w??rld termN• inN?lude intelleN?tu?°l diN•?°bility, devel??Nˆment?°l diN•?°bility, ment?°l h?°ndiN??°Nˆ ?°nd ment?°l ret?°rd?°ti??n. ?? le?°rning diN•?°bility iN• ?° life-l??ng N???nditi??n th?°t uN•u?°lly beginN• ??n ??r ?°r??und the time ??f birth ?°nd reN•ultN• in ?° reduN?ed ?°bility t?? underN•t?°nd new ?°nd N???mNˆlex inf??rm?°ti??n ?°nd N???Nˆe indeNˆendently.
The basic research question this paper tries to address is:
“Dignity in health care for people with learning disabilities (LD): Fact or a Farce?”
Through this question an attempt is made to:
Examine the range of services currently provided to people with learning disabilities.
Whether such services are in conformity with the overall objectives set by the government.
Whether there exists any discrimination or prejudice between people with learning disabilities and the “normal” public in providing such services.
Whether the claims made by the government concerning equality and fair treatment of such people hold true.
The answers to the above questions, as provided through the literature review will help in determining whether dignity in care for people with learning disabilities is a ‘fact or a farce’.
Aims and Objectives:
The main aim of this study is to explore the issues related to dignity as it pertains to health care of people suffering from learning disabilities. The objectives include:
To explore the range of challenges faced and problems encountered by people suffering from learning disabilities
Assess the quality of health care services available to them
Investigate the need for a comprehensive and an all-encompassing health care policy for such people
To understand and compare the type of services offered and available to them
To explore the role of carers, health care institutions and other support services in enhancing their status and ensuring their well-being.
The concept of ethics has evolved recently from the modest definition of the term – that of conventional ethics, to its gradual transformation into various branches and sub-types such as bio ethics, ethics related to human rights and to the more recent, health policy ethics. Ethics in terms of health care refers to the equitable and fair distribution of resources, benefits and services among the people, regardless of their age, gender, race, ethnicity, socio-economic background or the kind of illness they are suffering with. Equity in treatment of illnesses, hence, is an inevitable and inseparable part of health care ethics.
On account of growing concerns regarding the inequitable treatment given to people with learning disabilities the initiatives related to providing adequate and good quality health care have gained momentum.
Activists worldwide, campaigning for the cause of provision of adequate health care facilities for people with various disabilities, have actively pushed for dignity in health care, especially towards people with learning disabilities. They have demanded a thorough review of policies and principles of health care to ensure dignity of such people. (Morrison, 2008).
As the civilization confidently strides towards a new millennium, there is likely to be a rise in group of supporters campaigning for and advocating ethics in health care with a special stress on protecting and defending human dignity. Such a cause which is advocated by academic scholars, researchers, human right groups and activists alike, must, hence be taken up seriously and appropriate policies are developed at the local, regional as well as national levels to ensure compliance (Fulford et al, 2002).
Ethics in general and in health care in particular, has undergone a major transformation from a concept which was initially confined to protecting the interests of an individual to a full-fledged social concern. Hence it is inevitable for the health care institutions to take such a matter into consideration while developing strategies and implementing health care policies, which involves people with learning and other developmental disabilities.
For the purpose of this study, phenomenological research methodology is chosen, whereby observations are made on the basis of data collected from trusted government websites such as the NHS, published research reports, medical journals, books as well as magazines and newspapers.
In order to accomplish the research objectives, an attempt was made to explore, analyze and seek information related to qualitative studies which aimed at:
Assessing the plight of people suffering from learning disabilities.
The perception of such people towards the health care facilities made available by the government.
The existence of various services and its effectiveness and addressing the key issues and challenges faced by such people.
The need for trained carers and the knowledge which they must possess in order to be able to deal with such people, in a better and efficient manner.
The various obstacles which may be encountered while dealing with patients suffering from learning disabilities – right from detection to end-of-life care, etc among others.
This research is based on the phenomenological research methodology, which takes into consideration the perspectives of other researchers, and research reports published by government departments comprising of first hand information and accounts of people suffering from learning disabilities. According to Dilthey, (in Rapport, 2004):
“The quest to understand ‘more’ and ‘better’ is essentially a qualitative pursuit that requires an ‘experience-near’ language. It starts with experiences we already understand and expands and deepens these understandings into broader and different contexts through dialogue with ‘otherness’. Such understanding proceeds by a mode of analysis in which meaning arises out of relating parts to whole” (Pp. 80)
Literature review helps in assessing, analyzing and interpreting various studies conducted by scholars, and researchers with regard to the topic under study and helps in justifying and substantiating the research hypothesis. Literature reviews help in summarizing the various perspectives presented by the researchers with regard to the given topic and lend more credibility to the subject being discussed. According to Burns and Grove (2005):
“Literature review is an organized written presentation of what has been published on a topic by scholars. The purpose of the review is to convey to the reader what is currently known regarding the topic of interest (Pp.93).
People with learning disabilities are often excluded within society also have little control over their own lives, and were “more likely than others to have bad things happening in their lives (Joint Committee on Human Rights, 2008). People with learning disabilities, and particularly older ones, are among those groups of people who are faced with various barriers, such as access to good quality health care and equality in opportunities and health care services available to them, which add to their woes by making it all the more difficult to cope with their disability (Jenkins, 2005; Frey, 2006). People with learning disabilities comprise of a highly vulnerable section of the society and have limited access to health care facilities / services offered to them. Hence they are often faced with obstacles and challenges while copying with grave situations such as loss and bereavement of loved ones, personal illness, death etc (Elliott, 1995). which in turn tends to aggravate their situation and increase their dependence on the society – which includes their friends, family and loved ones as well as the community in general. They are known to have been ignored persistently in terms of providing services in the need of personal illness, death, and other challenging life situations, thus increasing their vulnerability all the more.
One of the most common characteristics observed in case of people with learning disabilities, on the basis of various studies, is their inability to communicate effectively. Although some of them can communicate their thoughts, feelings, fears and emotions effortless, a majority of them find it difficult to communicate accurately, in a meaningful manner. Such a drawback, often leads to further serious complications, such as detection of any major health problems, thus putting their lives at risk (Gates, 2007; Great Britain: Joint Committee on Human Rights Report, 2008).
According to Tuffrey-Wijne (2003), one of the most effective means of accurate medical assessment is appropriate and effortless communication and any irregularity in communicating issues related to one’s health often, invariably leads to disastrous results, which affects the health of the individual in question, and leads to incorrect and undesirable outcomes. The outcome of ineffective communication and inability to communicate one’s health problems is even more lethal in case of people with learning disabilities. According to Tuffrey-Wijne (1997) any inefficiency on the part of the individual suffering from learning disability, to communicate their health problems, may lead to a late diagnosis which further leads to an incorrect prognosis, and ultimately ends in untimely death of the individuals concerned. Office of Population Censuses and Surveys (OPCS 1998) showed that 48% of people with learning disabilities have impairment in one sensory domain and 18% are doubly impaired. Most significant issues are eating problem, nutrition, sleeping, respiratory function problems, foot care, skin conditions, pressure sores, bowel problems and gear disease (J.O’Hara&A.Sperlinger, 1997). Improved access to health care services for people with learning disabilities is a step ahead in ensuring their well being. Good quality physical and mental care services can go a long way in ensuring their long term safety. Furthermore increased commitment on the part of the carers and other health care service providers is probably one of the fastest and cheapest ways to ensure their better health. One of the most important and crucial elements of health care services is offering end-of-life care services to people with learning disabilities.
Communication, with respect to people with learning disabilities, is not restricted to the mere transfer of thoughts to the other person/s but in fact, it includes the ability that other person, to whom the information is being communicated, to accurately interpret the thoughts being conveyed, respond promptly on the information made available to them, and ensure follow up. Such a form of reciprocal communication is an extremely important and fundamental survival tool, for people with learning disabilities. According to Kerr et al (1996) available statistics have indicated that as many as 50% of the people suffering from learning disability suffer from some form of communication impairment, which includes difficulties in cognition, hearing, language, speech or social interaction (Ambalu, 1997). This is a matter of grave concern for the care givers as well as the government health care institutions which are involved in providing health care services to people with disabilities.
Another equally critical aspect, which is generally observed with regard to the people with learning disabilities, is the negative perception about such people among the common public, which in turn further gives rise to an equally negative reaction from people with learning disabilities which arises from the feeling that they are being negatively viewed (Gates, 2007). According to Thornton (1996), Lindop and Read (2000) and Read (2006) the major reasons behind such negative perception of people with learning disabilities is the lack of adequate knowledge as well as lack of professional experience which invariably leads to negative attitudes among people towards those with learning disabilities. According to Mencap (2004) such factors may further culminate into professional incongruity and prejudicial treatment, thereby further hampering their mental and physical well-being ultimately leading to institutional discrimination and poor health care for such people. Create awareness and build up interpersonal relationships with people with learning disabilities, consideration needs to be given to how to maintain relationships, using everyday opportunities to engage in valued conversation. Often, as carers, main interaction with people is associated with personal care (Ambalu in O’Hara & Sperlinger1997). The government White Paper Valuing people: A new strategy for Learning Disability for the 21st Century (Department of Health 2001a) clearly set the agenda for us, in offering appropriate and effective support people with learning disabilities in their everyday lives.
“Learning Disability is a label. People with learning disability are people first.”
The British Institute of Learning Disabilities, 2010
Thus it is imperative that such people receive utmost care and quality health care services which, if not better, at par with the facilities and services enjoyed by the rest of the population, regardless of their mental / physical health. People, regardless of their backgrounds – i.e. race, ethnicity, gender, age, or socio-economic backgrounds they belong to, have an equal and just right to have access to quality health care services, and the denial of such a basic right, is the denial of human rights.
It has been observed, on the basis of the above research, that people suffering from learning disabilities are often victims of negative public perception and lack of professionalism displayed by the carers, which forces this group to succumb to their illnesses, which often goes undetected. Such disenfranchised deaths, are common among people with learning disability (Read, 2006) and hence requires active steps to be taken on the national level. In order to eliminate and / reduce the occurrence of such disenfranchised deaths among people with learning disabilities; it is necessary and extremely important for the general population to treat such people with dignity, and respect. They deserve an equal right to be treated as adults and equal citizens.
Such a policy entails implementation of creative health care strategies specifically aimed at people with learning disability, as well as active participation and cooperation on the part of the carers, in order to ensure effective communication, which in turn, as observed from the above research, ensures better understanding of the problems faced by them, a prompt analysis and diagnosis and an effective treatment.
Dignity in care is a very critical element of health care, and considering the fact that people with learning disabilities are amongst the largely socially disqualified and hence highly vulnerable, groups in the UK it requires immediate attention at both institutional as well as national level. People suffering from learning disabilities are socially ignored, and often are subject to prejudicial treatment, partly owing to lack of awareness and more so, on account of the lack of availability of opportunities. They rarely have proper employment and have little or no control over the carers who are appointed for looking after their well-being.
Moreover their concerns are barely discussed on a wider platform. This situation is grave and calls for immediate change and positive reforms. People with learning disabilities are equally respectable members of the society and they need to be treated with dignity and care which they deserve. Concerns such as unemployment, proper health care, education, housing, social security, etc should be addressed by the government in association with the local councils and ensure its proper access to the people with in dire need of such services. Proper implementation of well designed policies and measures and synchronized co-ordination of all members of the community can go a long way in securing the well being of such people.
It can be difficult at times, and extremely challenging but such positive practice by the health care service providers and carers alike can pave way for better networking, collaborative working and interdisciplinary support, thus ensuring their health and safety in the long run (BILD,2010).. It is imperative that the government and the leading health care institutions champion this cause, and instigate, lead and encourage such good practice initiatives by providing professional and well trained carers for people with learning disabilities. Hence gaining trust and building relationship over a period of time are important consideration not only establishing and maintaining relationships, but also in thinking about ending (I. Peate & D. Fearns 2006). In conclusion, strict guidelines and policies are not enough at times, and it needs a collaborative effort on all fronts to strive to provide better care to people with learning disabilities.