Palliative Care Policy for Multiple Sclerosis - Essay Example

Palliative Care Policy for Multiple Sclerosis I. Introduction This paper will analyse the policy position ment of the Multiple Sclerosis Society (MS) in the UK. The policy concerns ‘palliative care and end of life issues’. The primary premise of the policy context is elaborated by the working policy of Multiple Sclerosis (MS) Specialist Nurse Service in Greater Manchester, which has the following goal (Burgess 2008): “Deliver holistic care appropriate to the needs of the people affected by MS that is person centred and evidence based, in an appropriate setting and in a timely fashion” (Burgess 2008, 3). Multiple sclerosis is a severe inflammatory ailment and a serious problem in the UK. According to current studies, roughly 1 in 1,000 individuals in the UK (Gatley 2009) acquire multiple sclerosis later in life. MS is widespread among adults in the UK. II. Policy Analysis and Assessment A. Policy Summary The Multiple Sclerosis Society in the UK advocates a palliative care policy for multiple sclerosis. Palliative care, as defined by the group, is the ‘active holistic care of people with advanced progressive illness’ (MS Society 1). The group argues that palliative care is suitable for multiple sclerosis because of its important components, such as dispensation of social, mental, and emotional assistance, and pain management, with the objective of providing a higher standard of life for people with multiple sclerosis and their family. This policy context recognises the fact that palliative care has been traditionally linked to the notion of ‘end of life’. However, MS acknowledges the appropriate application of palliative care to the current treatment of multiple sclerosis. The manner in which the UK government deals with the problem of caring for people with multiple sclerosis has been flawed and inadequate. Hence, MS proposes the use of palliative care to address the very erratic condition of multiple sclerosis. Furthermore, the policy argues that palliative care’s holistic premises are needed throughout life because of the incapacitating and volatile nature of multiple sclerosis. Finally, the policy states that individualised, premium palliative care should be accessible and provided to individuals with multiple sclerosis whenever it is required instead of being restricted to the later or end of life stages. B. Policy Assumptions The underlying principle of the policy is that young adults in the UK require and deserve premium care that is suited to their individual needs. This policy reflects the developing assumption that the provision of end of life and premium palliative care should become the focus of policymakers, health practitioners and representatives, and service providers. The MS society totally agrees to this assumption and will keep on striving to enhance care for individuals with multiple sclerosis in proportion to the aim of the UK government towards progress. The MS Society is presently a constituent of the National Council for Palliative Care (NCPC) Public Awareness Coalition, an organisation that was formed as a component of the End of Life Care Strategy with the aim of positively contributing to behavioural and attitudinal changes in the UK (Multiple Sclerosis Society 2011) with regard to the issue of death and bereavement. C. Policy Implications Involvement of the public, patients, and service users has been given great precedence in the UK social services and policy. In 1995, the Calman Hine Report heralded the participation of service users in palliative care by proposing that health services must be individualised or person-oriented (Firth, Luff & Oliviere 2004). There is a stronger focus on the experiences of carer and patients and quality and appropriateness of services. The government of the UK has formed a Commission on Patient and Public Involvement for the National Health Services (NHS) (Firth et al. 2004). Afterwards, the government, in 2003, instituted a key NHS forum, that is, Choice, Responsiveness and Equity in Social Care and NHS, which prioritised and advocated the involvement of user and patient and which strongly engaged users in formally assigned task committees, comprising one assigned to enduring, chronic conditions, such as multiple sclerosis, which dealt with concerns with palliative care (Buse, Mays & Walt 2005). The MS Society’s policy is heading towards this outcome. But there are arguments that palliative care policy for multiple sclerosis may fail to promote patient and user involvement. User and patient involvement was a legal condition in social care from the 1990s. Likewise, policies for user involvement in the UK were weak and immature since the latter part of the 1980s (Buse et al. 2005). The concerns promoted by the palliative care policy for multiple sclerosis emphasise how existing knowledge of involvement needs reassessment. Earlier government efforts towards involvement in the 1990s placed emphasis on user and patient participation in feedback and complaint procedures, service management, and planning (Payne, Seymour & Ingleton 2004). Palliative care policy underlines the significance of promoting user and patient participation in professional practice. Unfortunately, there is an inclination to view and promote ‘user involvement’ as a supplement and to define it as an independent endeavour in itself. However, the main participation that people with multiple sclerosis have in the palliative care policy is with the selection of practitioners and specialists who address their needs. It is at this point that patient involvement must begin and be reinforced. The specific implication of this for palliative care policy is evident. It implies that practice is viewed as a mutual endeavour into which the patient can influence, through articulating their needs, insights, opinions, and preferences, practice and their future as service users. D. Policy Initiatives from Various Perspectives The establishment of the Social Exclusion Unit in 1997 by the government of the UK has spurred policy initiatives based on the paradigm of social inclusion (Firth et al. 2004). Nevertheless, policy and political initiatives against social exclusion fail to alleviate discrimination in health care (Leathard 2003). Reforming practice requires a dedication to procedure and value. As espoused by palliative care policy for multiple sclerosis, according to Poser (2003), the important changes should be in the areas of problem identification, strength promotion, and people motivation. The MS Society appeals for more planning in and investments on palliative care for multiple sclerosis to make sure those services are accessible to men and women, social classes, and regions. It argues for additional training concerning palliative care, such as pain management and the course of multiple sclerosis, for informal and formal carers. The group also calls for a further restructured and improved group of caregivers, combining various forms of services to offer quality care and more effective communications between people with multiple sclerosis and their carer. E. Policy Models The palliative policy for multiple sclerosis uses the resilience model and the dual paradigm. The resilience model is a component of a paradigm shift of focus in mental and social health care from weaknesses to strengths. The emphasis is shifted from risk variables to defensive ones, specifically, what allows individuals to be resilient in spite of major difficulties like bereavement (Firth et al. 2004). For people who do not have enough resources and helpful and accommodating significant others, even dealing with everyday routines is a hefty accomplishment. According to the MS Society, if the strong points of people with multiple sclerosis are identified and acknowledged, they are viewed as dynamic individuals, and are hence motivated, instead of unreceptive dependents, which is demotivating. This approach may productively be used for risk assessment of multiple sclerosis (Leathard 2003), where there are possibilities of overlooking strengths and strengthening mental than social variables. The dual paradigm, on the other, offers palliative care policy for multiple sclerosis a structure for identifying and understanding actual issues together with emotional ones (Firth et al. 2004). MS caregivers and social workers should be personally involved in the care of individuals with multiple sclerosis and their families, especially those who have inadequate social and material resources. F. Policy Solution Health care providers and professionals who strive to assist and support individuals with multiple sclerosis have to acknowledge the disparity in power they possess as professionals with access to vital information and resources. This understanding is a requirement for empowering people with multiple sclerosis, but is usually taken for granted. Ironically, health care providers and professionals feel occupationally and individually incapable when dealing with individuals from various social class, racial groups, gender, etc., and require adequate support to think about matters of their own weaknesses if they are to take part in the incapability of people with multiple sclerosis. It is vital to bear in mind that, “at times, empowering the service user means defending their right to reject both the help offered and the models on which it is based” (Firth, Luff & Oliviere 2004, 146). There has been a considerable negative opinion in scholarly discourses of patient and user participation in palliative care for multiple sclerosis. Anxieties have been expressed about such participation being unfavourable and traumatic. These are major problems that have to be dealt with and resolved. Conclusions The UK government obviously promotes an evidence-based policy towards palliative care. This attempt has been escorted with an argument that the influence and point of view of service users or patients should be acknowledged as a vital source of understanding and knowledge and that they should take part in research and practice to make sure it represents and respects their values, interests, and judgments, along with those of other service users. The MS Society is currently conducting their own empirical investigation of user involvement in palliative care. This effort is intended to discover new means of gaining and applying the perspectives of service users. References (n.a) (accessed on 23 July 2011) Multiple Sclerosis Society Policy position statement 19: Palliative care and end of life issues, pp. 1-4. Burgess, M. (2008) “Operational Policy MS Nurse Service” Great Manchester Neuroscience Centre. Buse, K., Mays, N. & Walt, G. (2005) Making Healthy Policy. Maidenhead, England: Open University Press. Firth, P., Luff, G. & Oliviere, D. (2004) Loss, Change and Bereavement in Palliative Care. UK: Open University Press. Gatley, K. (2009) “A History of Multiple Sclerosis” Medical History 53(3), 448+ Have, H. & Clark, D. (2002) The Ethics of Palliative Care: European Perspectives. Philadelphia: Open University Press. Leathard, A. (2003) Interprofessional Collaboration: From Policy to Practice in Health and Social Care. New York: Brunner-Routledge. Payne, S., Seymour, J. & Ingleton, C. (2004) Palliative Care Nursing: Principles and Evidence for Practice. Maidenhead, England: Open University Press. Poser, C. (2003) An Illustrated Pocketbook of Multiple Sclerosis. Boca Raton, FL: Parthenon. Read More