The Individual Access to Health and Social Care - Essay Example

The individual accesing health and social care (give example of learning dissabilty patient with dementia) Sarah was a 62-year old learning disability patient with Down syndrome, who had developed dementia that went undiagnosed. She was admitted to the hospital when she started to show signs of acute withdrawal. She had completely stopped walking and talking to people though she was not diagnosed with any physiological problem. As her brother and sister (the only close relatives she had) were living far away from her place, they kept her in their parental house with a domestic help to take care of her. For almost one year after the first hospitalization, she stayed in this house. During this period, she was almost immobile and disoriented of time and space. She had lost all control over her eating habits as well. As a result, she developed a set of metabolic disorders including diabetes and high cholesterol. She was forgetting when she ate last time, and so went on having many sessions of meal a day. During the last one year that she lived, she was hospitalized two times, but the caregivers did not understand that she had dementia. Her forgetfulness was accounted for with the learning disabilities that she already had. Eventually she died of a massive heart failure. When the case of Sarah is examined, it can be seen that if her dementia was properly and timely diagnosed, it could have been possible to prevent her premature death. Being a person with Down syndrome, she was unable to communicate or even understand properly what she was going through, when she started developing dementia. It seems, the doctors did not check whether there was any difference in her behavior, which would have been possible by interviewing her caregiver to find out the pattern of behavioral changes. Such an interview might have thrown light into her newly developed illness, dementia. Sarah might have been finding that her disability to carry out day- to-day life routines was increasing. This was actually because of the dementia, that she was developing. Not knowing this, she started withdrawing from life. She might have been afraid to walk or talk because she was forgetting the way to the bathroom and the face of her neighbor. Because of her learning disability, she was unable to communicate these problems with the doctors and nurses. This is the key issue regarding our system of health care, which is insensitive to the needs of those who require special attention, like Sarah. This becomes a problem in the society considering the fact that “the prevalence of dementia among people with a learning disability can be four times higher than found in the general population (Keady, Clarke and Page, 2007, p.189). A patient with learning disability can have a set of problems related with cognition and corresponding behavior. Hence, definitions for learning disability vary according to specific contexts. For example, psychologists say that there is a “specific learning disability” or SLD, when an individual has a “problem in understanding or in using spoken or written language” (Boyles and Contadino, 1998, p.62). Another definition says that it is a “difficulty in more than one of the psychological processes involved in understanding or using language in a person of average to above average intelligence” (Boyle and Contadino, 1998, p.78). Some warning signs for learning disability in a child can be problems related with language, memory, attention and motor skills (Boyles and Contadino, 1998, p.66). The overall consequences of learning disability can be: 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); Which started before adulthood, with lasting effect on development (Corbett, 2007, p.2). As the patients with learning disability are a group so diverse, they need “at various times throughout life”, “varying levels of support” (Corbett, 2007, p.3). Hence it is very important for the health providers to understand the needs of each patient specifically. Identifying their problems realistically, understanding that they have equal rights to anyone who is considered normal, realizing that they need medical help at times, realizing that they may need special help also in certain circumstances, and knowing that they are individuals who have “different needs”, are all part of the right approach of the medical service provider towards these patients (Corbett, 2007, p.6). For example, people who have Down syndrome, like Sarah, might have problems like thyroid function disorders, congenital heart defects, respiratory tract infections, obesity, skin conditions, risk of leukaemia, hearing and eye sight problems etc. (Corbett, 2007, p.9). Down syndrome is defined as a “developmental disorder caused by an extra chromosome- a structure in the cell nucleus that contains genetic material” (Evans-Martin, 2009, p.9). People with Down syndrome have a greater possibility at older age to develop Alzheimer’s disease, which is a kind of dementia (Prasher, 2006, p.1-3). Dementia is “characterized by a decline in cognitive function and memory from previously attained intellectual levels, which is sustained over a period of month or years” (Kerr, 2007, p.22). In case of patients with learning disability and dementia, the urgent requirement is to have better awareness about this condition, as far as health care community is concerned. This is so because the care needs of such people will be very different from the people having learning disability alone. It is a multi-disciplinary gray area, where professional skills regarding learning disabilities, geriatrics and dementia have to converge (Kerr, 2007, p.10). But the problem with our existing care system is that such a convergence is rare. Also when a person with learning disability gets aged, most probably he or she will have to move to an old age care home. In this place, they might not have access to what care they used to get for their learning disability problems. The prevailing ageist approach in the society will thus be the greatest hurdle for them in getting proper care (Kerr, 2007, p.21). Ageism is a terminology that represents “discrimination against people because of their age” (Thompson, 2006, p.15). Researchers (Carnaby and Cambridge, 2006; Walker and Walker, 1998; McDonald, 2006) have observed that when a person under the care of one health service category is transferred to another, based on the factor that he/she has aged, he/she is no more getting the services which helped him/her to be independent but instead would be undergoing a reversal of status- from independence to dependence (Walker and Walker, 1998). Similarly, it is also pointed out that as a younger adult, a patient of learning disability will always be getting better quality service than as an older adult (McDonald, 2006). These are all factor that complicate the chances of well-being in the case of a patient like Sarah. There are a set of cultural and socio-economic factors that influence the health and health choices of individuals in general, and this category of patients, in particular. It is in this context that a differentiation is made between health education and health promotion. Health education is defined as “[c]ommunication activity aimed at enhancing positive health and preventing or diminishing ill-health in individuals and groups through influencing the beliefs, attitudes and behavior of those with power and of the community at large” (qtd. in Sharma and Romas, 2010, p.6). A number of functions hitherto included in the concept of health education has been of late considered separately under the category, health promotion (Sharma and Romas, 2010, p.7). These functions include, “community mobilization, networking, and advocacy” (Sharma and Romas, 2010, p.7). This is the backdrop in which, health promotion is defined as, “the process of enabling people to exert control over the determinants of health and thereby improve their health” (WHO, 1986, p.1). In the current approach to health education and health promotion, health education is often viewed as a key component coming under the umbrella terminology of health promotion. Here it has to be noted that health education correlates with the illness model of healthcare while the concept of health promotion has its roots in the integrated lifestyle model of health care (WHO, 2011). To complete this definition, the definition of health as such also has to be remembered, which says: [Health is] the extent to which an individual or group is able, on the one hand, to realize aspirations and safety needs; and, on the other hand, to change or cope with the environment. Health is, therefore, seen as a resource for everyday life, not the object of living; it is a positive concept emphasizing social and personal resources, as well as physical capacities (WHO, 1984, p.23). The part of this definition, which mostly concerns this discussion, is the availability of “social and personal resources” for an individual to preserve and protect his/her health (WHO, 1984, p.23). What Sarah lacked was the same. This is indicative of a lacuna in health promotion rather than health education. While defining health promotion in terms of health determinants, a clear concept has to be there about which factors can be accepted as health determinants. By definition, health determinants are, “a range of personal, social, organizational, environmental, economic, and political factors that influence the health of individuals and groups” (Leka and Houdmont, 2010, p.162). Hence, the social and personal resources mentioned above are just one among these many health determinants. Before focusing attention on these resources, a general idea has to be worked out about the other determinants, significantly, the personal, economic and cultural factors. If the case of Sarah is viewed based on the categorization of these determinants as done by Dahlgren and Whitehead (2007), it can be seen that Sarah had problem with the “biological and hereditary factors” which belong to the first category. Sarah was having Down syndrome, which is a hereditary disease. In the later stage of her life, she had developed a problem with her dietary intake, which again belongs to the “individual lifestyle factor” as is designated by Dahlgren and Whitehead (2007). But this is also a “social and community” factor as well because Sarah did not get enough community level and social level support to help her to cope with the developing dementia (Dahlgren and Whitehead, 2007). Her being a member of a middle-income family and also the huge costs involved in accessing health care in USA, worked out against her getting more care and thus amount to “general socio-economic, cultural and environmental conditions” (Leka and Houdmont, 2010, p.162). Poverty, lack of proper housing, lack of employment, lack of access to information, absence of social connectedness, and discrimination based on disability and age are some issues that come under this category (Gates and Edwards, 2007, p.421). In general, the determinants of health inequalities discussed above in the case of Sarah are also generally identifiable in connection with all people of learning disabilities. To sum up, they are: Increased risk of exposure to well established ‘social determinants’ of health; Increased risk associated with specific genetic and biological causes of learning disabilities; Communication difficulties and reduced health ‘literacy’; Personal health risks and behaviors; Deficiencies in access to and the quality of healthcare provision (Emerson and Baines, 2010, p.10). Another environmental factor that was involved in Sarah’s case is, the lack of proper diagnosis among the medical community in the case of a patient of learning disability with dementia. The risk involved in such a case is that “the early stages are more likely to be missed or misinterpreted” as a manifestation of the already existing learning disability (Alzheimer’s Society 2011). It is also observed that a “full range of psychiatric disorders occur in older adults with learning disabilities” and hence it is a complex process to diagnose accurately (Fraser and Kerr, 2003, p.178). If the diagnosis is wrong, a mental illness can be mistaken for a physical illness or vice versa. This is where the co-morbidity involving learning disability and dementia has important implications for nursing practice. It is a fact that “when a person with dementia finds that their mental abilities are declining, they often feel vulnerable and in need of reassurance and support” (Alzheimer’s Society 2011). It is the people who are very close to them or who undertake the responsibility of caring for them, who can give this support (Alzheimer’s Society 2011). In the case of Sarah, her discharge from the hospital before she became medically fit to leave was a lapse on the side of the medical care system. In this regard, the general guideline has to be that “people should not be discharged from hospital unless they are medically fit and have been formally discharged by a named doctor” (Alzheimer’s Society 2011). The point being stressed here is that “before a person is discharged, their needs must be assessed so that any support or care services that they need can be arranged before the person leaves hospital” (Alzheimer’s Society 2011). The assessment that precedes a decision to discharge has to be a “multidisciplinary assessment” (Alzheimer’s Society 2011). It should “involve the person's consultant, nursing and ward staff, physiotherapists, occupational therapists and social workers” (Alzheimer’s Society 2011). As the nursing staff would be having the closest contact with the patient in terms of physical and psychological well-being, it becomes the paramount responsibility of them to help in carrying out a correct multi-disciplinary assessment. In follow-up to the assessment and the decision to discharge, the role of the nurse also extends to the realm of individual care. This is also an area where the Community Learning Disability Nurse (CLD nurse) can make a great difference. The responsibility of a CLD nurse is to take nursing from the “hospital-based practice to providing a wide-ranging and specialist service within the community” (Keady, Clarke and Page, 2007, p.188). This is a paradigm change that has happened in the field of learning disability nursing, which amounts to change in “role, approach and position” (Keady, Clarke and Page, 2007, p.189). The CLD nurses have a position outside the “sickness model of care” that has been the norm since the beginning of medical professions (Keady, Clarke and Page, 2007, p.189). They are more at home with the “socially integrated” model of lifestyle for the patient (Keady, Clarke and Page, 2007, p.189). And it was exactly the absence of such a nursing service that resulted in the happenings, which led to the death of Sarah. Now, if the existing legal framework is examined to find out provisions that ensure, people like Sarah have access to health care as prescribed by this changed paradigm, a number of laws have to be scrutinized. The Mental Capacity Act 2005 enacted by UK was a major step in recognizing the need of special care for people with learning disabilities (SCIE n.d.). The proclaimed objective of this law has been to “protect and restore power to those vulnerable people who lack capacity” (SCIE n.d.). The “new roles, bodies and powers” that this legislation has brought about include, special attorneys, New Court of Protection, Office of the Public Guardian, Independent Mental Capacity Advocates, advanced right to “refuse treatment” and also positioning neglect and ill-treatment as “criminal offense” (SCIE n.d.). United Kingdom has also launched the “Open Dementia e-Learning Programme” which is “aimed at anyone who comes into contact with someone with dementia and provides a general introduction to the disease and the experience of living with dementia” (SCIE n.d.). This programme has been mainly focusing the caregivers who can make a qualitative change in the lives of Dementia patients (SCIE n.d.). The Department of Health in UK has a policy that say, “Primary, Acute and Specialist NHS Trusts must play in a central role in meeting the health needs of people with learning disabilities” (Emerson and Baines, 2010, p.5). The Department of Health and the Care Services Improvement Partnership (CSIP) had published a document on the services needed for the mental health problems of the elderly people in 2005 (CSIP, 2005). It was this document that prescribed the use of memory assessment services for “the early diagnosis” of dementia in patients with learning disabilities. In the case of Sarah, no such assessment was carried out which amounts to acute negligence, which again can be viewed as a criminal offense under the Mental Capacity Act. Similarly, a multi-professional approach was recommended by a joint clinical guideline brought out by National Institute for Health and Clinical Excellence (NICE) and Social Care Institute for Excellence (SCIE) (NICE/SCIE, 2006). In spite of all these legal parameters, many patients of learning disabilities who have developed dementia have gone uncared for. It has to be remembered that a huge majority of these people are living in their houses or in their relatives’ houses. But figures have shown that “in 2008/2009, (only) 57,465 adults with learning disabilities were using local authority-funded day services, an almost unchanged number since 2005/2006” (Emerson et al., 2011, p.9). But some positive outcome is also visible when figures show that “in 2009/2010, 111, 295 adults with learning disabilities were using local authority-funded community services, a steady increase since 2005/2006” (Emerson et al., 2011, p.8). But this is only about one percent of the total population of those who are having learning disabilities (Emerson et al., 2011, p.6). It is a proven fact that people having learning disabilities are victims of many inequalities in connection with their health (Emerson and Baines, 2010, p.5). It has been found that people with learning disabilities in UK have higher mortality rates, poorer general health status, and more accidents and injuries (Emerson and Baines, 2010). In this situation, the role of a nurse is primarily to ensure that proper identification is made of people having learning disabilities and dementia together. The second step is to ensure that they are not subjected to unequal treatment (in accessing special health care) because of the ageist approach of the general health care system. One major problem is that there are no clear-cut provisions in law delineated for patients of learning disability with dementia. In such a situation, a nurse needs to be aware of inequalities in terms of the social determinants. He or she should be aware that “people with learning disabilities may have poor bodily awareness and a minority may have depressed pain responses” (Emerson and Baines, 2010, p.11). Similarly, he/she has to remember that they have problems with their diet, exercise, problems of obesity, substance use, and above all a minimized access to quality healthcare (Emerson and Baines, 2010, p.11-13). In such a situation, a misjudgment or misinterpretation regarding the real nature of the illness is common. In scientific terminology, this is termed as “diagnostic overshadowing”, which is symptoms of physical ill-health being mistakenly attributed to either a mental health/behavioral problem or as being inherent in the person’s learning disabilities” (Emerson and Baines, 2010, p.13). There can also be factors that trigger the accessing of multi-professional health and social services by these patients. The major factor can be an initiative to build “effective partnership working between all agencies involved in the care of people with learning disabilities and dementia” (RCPsych, September 2009, p.8). The applications of “person-centered planning” and interventions based on “Care Programme Approach have been pointed out as the most effective intervention strategies (RCPsych, September 2009, p.48). The core concept behind these two approaches is that as dementia grows with age, there should be a flexible and evolving intervention in place. To be more precise, at the early stages of dementia in a patient with learning disabilities, the caregiver has to go on telling the person which day, month, year, time or place he/she is in (RcPsych, September 2009, p.48). In the same way, the routines of the person have to be kept as simple as possible with limiting the choices of actions and decisions before him/her to a few (RcPsych, September 2009, p.48). Supporting tools like “memory aids” and “reference objects” can also be used (RcPsych, September 2009, p.48).In total, the whole communication between him/her and his/her surroundings have to be kept as direct and simple as possible (RcPsych, September 2009, p.48). But in the later stages of dementia, taking care of the physical health of the patient is of paramount importance (RcPsych, September 2009, p.48). This includes, “attention to weight, adequate nutrition and hydration, physical health including epilepsy continence, pain, and mobility” (RcPsych, September 2009, p.48). When the case of Sarah is taken again into consideration, it can be seen that there was health care system failure in all these aspects. Her dementia was not diagnosed, her diet and physical health was not taken care of, her communication needs were not dealt with and she was left to the seclusion that she unknowingly chose. If the laws, policy guidelines and the care ethics that has evolved as part of modern health care had been applied in this case, she might not have developed the metabolic problems she had. And she might have escapd the heart failure that she had. Thus, Sarah might have stayed alive for more months or even years. References Alzheimer’s Society 2011, “Leading the Fight Against Dementia”, Alzheimer’s Society [online] available at http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=103 Boyle, N.S. and Contadion, D. 1998, ‘The learning differences sourcebook’, London: Mc-Graw Hill Professional. 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