The Expert Patients Programme An Asset for the Health Service - Research Paper Example

The Expert Patients Programme – An Asset for the Health Service? The Expert Patients Programme is a training programme intending to provide skills and education for patients with long-term chronic condition in managing their life better. Since Expert Patients Programme has been introduced to tackle chronic diseases in UK, it is very important to do a brief study about chronic disease management in UK. Chronic diseases may be defined in the following manner. Chronic diseases are “those which are long term (lasting more than 6 months), non-communicable, involving some functional impairment or disability and are usually incurable. They can affect people of all ages and contribute to the disease burden in our society.” (1) Some of the chronic diseases are asthma, diabetes, arthritis, heart failure, chronic obstructive pulmonary disease, dementia and a range of disabling neurological conditions. These diseases significantly affect an individual’s quality of life and quality. The occurrence of such diseases increases with age. Many people suffer from more than one chronic disease and they face challenges including both medical and social. Chronic diseases generally, have one or more of the following characteristics: “They are permanent, leave residual disability, are caused by non reversible pathological alteration, require special training of the patient for rehabilitation, or may be expected to require a long period of supervision, observation, or care.” (2) Burden of chronic diseases across the world According to the World Health Organizations, chronic diseases are “the major cause of death and disability worldwide. The total number of people dying from chronic diseases is double that of all infectious diseases (including HIV/AIDS, tuberculosis and malaria), maternal and peri-natal conditions, and nutritional deficiencies combined.” (3). Chronic disease is an understood cause of poverty and hampers the economic development of many countries. Its occurrence rate in older people is very high and three quarters of people aged over 75 are suffering from it. Moreover, “chronic diseases, such as heart disease, stroke, cancer, chronic respiratory diseases, and diabetes, are by far the leading cause of mortality in the world, representing 60% of all deaths.” (4). In Australia, chronic disease causes 70% health burden. (5) In United States “chronic diseases - such as heart disease, cancer, and diabetes - are the leading causes of death and disability. These diseases account for seven of every 10 deaths and affect the quality of life of 90 million Americans.” (6) People will become more susceptible to chronic disease as the age increases. Because of the duration and difficulty of treatment, the amount of money, which required for the treatment, is huge. In USA, it comes around 70% health care spending. (7). It is estimated that “80% of chronic disease deaths now occur in low and middle income countries and they affect men and women almost equally.” (8). Burden of chronic diseases in Britain 1. It is estimated that at least one in three people suffers from chronic disease in United Kingdom. 2. Average 6 in 10 adults reports some form of chronic health problem. 3. It is possible that up to a three-quarter of those above 75 are suffering from chronic disease. It is estimated that around 3.4 million people in UK are affected by Asthma and about 8.5 million are suffering from Arthritis, including 14,500 children. An estimated 1.5 million people are diagnosed with diabetes mellitus. One in 130 of the UK population is suffering from epilepsy. Half a million are treated for heart failure and around 85000 people in UK are affected with Multiple Sclerosis. Chronic Disease Management Chronic disease self management education program intend to empower patients by providing techniques, information and teaching skills in making improvement in doctor-patient interaction and self care with the ultimate goal of improving quality life. Chronic disease management (CDM) may be defined in the following manner “it is a systematic approach to improving health care for people with chronic disease. Health care can be delivered more effectively and efficiently if patients with chronic diseases take an active role in their own care and providers are supported with the necessary resources and expertise to better assist their patients in managing their illness.” (9). In United Kingdom, the chronic disease management developed its own identity with the establishment of a series inter- linked National Service Frameworks to tackle chronic diseases. Long-term chronic conditions are not being treated in isolation. “Despite the clinical differences across these conditions, each illness confronts patients and their families with the same spectrum of needs: to alter their behaviours, to deal with the social and emotional impacts of symptoms, disabilities and to interact with medical care over time.” (10). NHS has already introduced several programmes to tackle chronic diseases in United Kingdom. NHS has already set up National Service Framework for diabetes, CHD, older people, mental health, children, renal disease and long-term neurological conditions. New pharmacy contract enables the PCTs to widen its services in the community. The NHS has also introduced Expert Patients Programme to deal with chronic diseases. Under Expert Patients Programme, NHS direct and digital TV provides resources for patients to care for themselves. Recent Initiatives Recent Initiatives for chronic disease management include the Expert Patients Programme and the policies introduced in the white paper, ‘Our Health, Our Care, Our Say: A New Direction for Community Services or Health Care Sector’. The Expert Patients Programme, which was introduced to help patients and healthcare professionals to better manage chronic conditions (11) and reduce the stress on NHS but recent evaluations on Expert Patients Programme showed mixed results. So it is very necessary to do a detailed study on the concepts, main components, aims as well as the arguments of the advocates of the Expert Patients Programme to find its effectiveness. The Expert Patients Programme in UK consists of the following elements: Promoting awareness and creating an expectation that patient expertise is the main component in the delivery of care to individuals with chronic disease. Establishing a programme for improving more user-led self management courses to permit individual with chronic diseases to gain access to opportunities to improve knowledge, confidence and skills to manage their conditions better and thus gain a greater measure of independence and control to improve their quality of life. Identifying difficulties in the participant led self-management in the NHS and address these difficulties, through existing National Service Frameworks. Integrating user led self management programme in to active NHS provisions of health care. Ensuring that every primary care trust area has facilities for user led self management for important chronic disease conditions. Widening the practical support for user led programmes. Developing a course which promotes health care professionals’ understanding and knowledge about the benefits of the user led self management programmes. Establishing a national Co-ordinating and Training resource to allow social, health services and voluntary sector professional to keep up with advanced developments in the provision of self management. NHS works closely with the important health professional bodies and the main patient representative bodies in order to implement the above elements of the Expert Patients Programme. The Concept of Expert Patients Initiative The life expectancy of the people, especially in developed countries, have greatly increased in the second half of the 20th century due to vast changes in socio-economic conditions and improved health care. Many people have started to live in to their 70s and 80s and beyond. With greatly increased longevity, the possibilities of onset of chronic diseases have also gone up. Now, the dominant disease pattern, especially in developed countries, is chronic illness. The observation of health care professionals such as doctors and nurses who undertake the treatment of people suffering from chronic disease is “my patients understand their diseases better than I do”. The experience and knowledge of the chronic disease patients has been greatly ignored in the past. Studies of Kate Lorrig at Stanford University have shown that patients’ knowledge and experience could benefit their care, quality life, and they can better cope with fatigue and decrease disability and their dependence on health care. (12) Researches in United Kingdom and America have showed that the chronic disease patients need not be just receivers of care but they could become decision makers in the treatment process. Chronic disease patients could be given greater control of their lives; it we could ensures that their knowledge of the disease is developed to such a point where they could be given power to take some responsibility for management of their disease along with health providers. “When patients succeed in resolving problems which they have themselves identified it enhances their sense of self efficacy. Quality of life improves when the patient rather than their disease is in control. (13)”. The Expert Patients Programme is designed to decrease the severity of symptoms and develop confidence, self efficiency and resource fullness of the patients. In United Kingdom, the initiative for the Expert Patients Programme was set out in the Government’s white paper, ‘Saving Lives: Our Healthier Nation’. An additional commitment was made in the NHS plan 2000. Generally, chronic disease patients are given information, advice and their questions are answered. But it was never gone beyond a level to make sure these patients’ improved knowledge of their conditions could be used for self-management within the boundaries of medical regime. The new thought created a huge impact in the health care of the chronic disease patients. People had to undergo unnecessary discomfort and pain along with a huge limitation to their quality of life. So NHS has decided to make fundamental changes in the way in which chronic diseases are managed. They started encouraging and enabling patients to take an active role in their own care. Expert Patients Programme or patients’ self-management programmes are not simply instructing or educating individuals about their disease and condition and then calculating success on the basis of patients’ observance. They are basically concentrated on building confidence and motivation for patients to make use of their own knowledge and skill to take effective control over life with chronic disease. Professor Kate Lorig of Stanford University is the leading international authority on Expert Patients Programme on the world. Chronic disease self-management programme (CDSMP) developed at Stanford University acknowledges that individuals with chronic illness should deal with issues like stress, pain management, and should learn to develop coping skills. The Expert Patients Programme, which has been developed by UK Government, includes exercise, cognitive system management, problem solving, nutrition and interaction with professionals. The Aims of Expert Patients Programme According to the government, the aims of the Expert Patients Programme are to introduce: Through national institute for clinical excellence and National Service Frameworks, high and clearer national standards so that patients know what to anticipate from high quality services; Complete programmes of clinical governance in all local services to improve and guarantee quality and form a safe atmosphere for patients; Increased choice and flexibility in accessing health care services, for instance, through NHS website, NAS direct and walk in centres; A more systematic and detailed positive approach to questions of consent with regard to patients information; Increased influence by patients over the contents and quality of services; When there are grievances and concerns about standards of care, more authority for advocates and patients representatives. These fundamental changes in the health care system are based on the fact that health care professionals and patients each have their own area of expertise and knowledge. The patient is supposed to share experience of illness, attitude to risks, social circumstances, preferences and values with the clinician. The health care professional is supposed to share diagnosis, disease aetiology, treatment options and outcome probabilities. People around the world are slow to acknowledge that patients could play a deceive role in the management of disease. To some extent, they are ‘experts’ in their own right because they have life skills to deal with chronic condition. Following as acute disease, it needs to be ensured that patients who have the need of follow-up treatment for a chronic condition and rehabilitation receive these services to a high standard. There are evidences to suggest that in certain systematic approach, patients take a leading role in managing their chronic conditions and they can contribute significantly in improving health, quality of life and reducing incapacity. Because of the above mentioned advantages, the British government’s white paper ‘Saving Lives: Our Healthier Nation’ introduced the concept of an Expert Patients Programme. Most of the chronic disease patients have requirements particular to their individual disease, they may have some common requirements, for example: Knowing how to identify and react to symptoms, coping up with attacks of disease; understanding the insinuations of professional advice; developing a steady pattern of sleep, rest and dealing with fatigue; accessing social services and leisure activities; creating strategies to cope up with the ‘psychological consequences of the illness; learning to deal with other people’s response to their chronic illness. Sadly, NHS or employment services or social service providers do not deal with the above-mentioned chronic problems comprehensively. The impacts of these inadequacies are considerable. For the patients, there is discomfort and pain and a limitation in their activities. There is also an economic cost arising from the associated personal expenditure and the avoidable days lost from employment. The challenge before NHS is to bring about a fundamental shift in the way chronic diseases are managed which may allow chronic disease patients play a crucial role in managing the disease. In UK, before the introduction of Expert Patients Programme, the focus of health care greatly on the care of severely ill people. It is proved that better management of these chronic disease may decrease or prevent the chances of an acute episode happening. In a better chronic disease services, the patients are given information, advice and their questions are answered. Advocates of Expert patients programme argue that it is not gone beyond this point to make sure that the patients increasing knowledge of his or her condition is developed to a point where the patient is empowered to take much of the control for its managements. Some organizations which stand for patients with chronic disease pointed out some of the drawbacks of the present system. For instance, only fewer than 50 percent people suffering from asthma had received information regarding how to prevent asthma triggers or how to identify the impending attack or the importance of stopping smoking. It is also estimated that around 20 percent people with epilepsy are misdiagnosed and received improper and unnecessary treatment. So when people become aware of their conditions they will become more involved in decisions regarding their treatment. Under Expert Patients Programme, there are several ways through which people can access the health information. Some of the ways are hospitals, general practitioner’s surgeries, pharmacies, health care professionals, pharmaceutical companies, public libraries, charities, voluntary organizations, internet web-sites, citizens advise bureaus, telephone help lines, newspapers, magazines, posters, radio, television, family, colleagues, friends, schools and colleges. The government of UK realized the importance of patients’ role in the management of their disease. In July 2000, NHS made a commitment to expert patients which include the following: Greater patient choice More information for patients Patient advisors and advocates in every hospital Citizen panels and patients forum in every hospital Stronger regulations of professional hospital standard A national panel to recommend reorganizations of hospitals. There are two types of self-management programmers. The first programme focuses upon improving patients’ ability to stick to their treatment regime and usually condition specific and controlled by health professionals. The other programme is basically user led which uses patient perception in the treatment. They point out how chronic disease impacts upon our daily life and the methods in which patients can take greater control over their chronic disease conditions on a day-to-day basis. One novel approach, in self-management of chronic diseases was the introduction of knowledge and skills required to manage the condition. This programme was introduced by British Epilepsy Association in collaboration with Leeds Metropolitan University. According to government, there are evidences to suggest that self management approaches are highly helpful in improving patients’ skills in managing chronic diseases. For instance, in a five-year research project, CDSMP was assessed in a randomized study which included more than 1000 subjects. The study found out that patients who undertook the programme improved their health status and healthful behaviours such as cognitive symptom management, exercise, coping and communications with physicians. Patients were also able to decrease their days in the hospital. (14). Julie Barlow, a professor at Coventry University has conducted a study on the self-management programmes. He has found out the benefits of the self-management programme are the following: Decreased severity of symptoms; Significant reduction in pain; Increased activity and life control; Increased life satisfaction and resourcefulness. Studies have also proved the potential to improve the quality of the patient-doctor relationship. According to the advocates of Expert patients programme, some other advantages of the programme are: Many patients suffering from chronic diseases will remain stable, improve or deteriorate more slowly. Many more patients are able to address effectively some certain aspects of their condition such as complications, medication and pain. Patients suffering from chronic diseases are less severely debilitated by sleep-deprivation, low levels of energy, fatigue and the emotional consequences of their illness. They are more effective in accessing social and health care services and retaining and gaining employment. Patients are more informed about medication and condition, feel more confident in their relationship with health care professionals and have more self-esteem. Many more patients developed skills to deal with the emotional consequences of their disease. They are also successful in using health promoting strategies such as exercise, improving diet and weight control. Patients are able to make greater use of employment training programmes and adult education. Chronic disease patients have more knowledge about their medication and condition and have higher self esteem. People with chronic disease spend fewer days in attending clinics or as hospital inpatients. After the introduction of Expert Patients Programme, many more patients with disease work as information workers, counsellors and advocates for others. The internal evaluation of around 1000 Expert Patients Programme partakers who finished the course between January 2003 and January 2005 shows that the programme is successful in Giving large numbers of patients with chronic disease conditions with the skills and confidence to better control their condition on a daily basis. 45 per cent of participants confident that they would not allow symptoms to interfere with their lives. After completing the course, 38 percent felt that symptoms were less severe. An Evaluation of Expert Patients Programme The term Expert Patients Programme has been widely used since it was first introduced by Chief Medical Officer of England. Since its inception, the concept of Expert Patients Programme has been both criticised and welcomed by doctors. (15) It is evident that people view differently the concept of Expert Patients Programme. According to Chief Medical Officer of health the expert patients are “people who have the confidence, skills, information and knowledge to play a central role in the management of life with chronic diseases." (16) Many doctors view expert patients are the people who demands a particular treatment which is clearly unsuitable, unproved, highly expensive or all three. In some cases, a treatment which a doctor has not heard of. A study by pharmaceutical industry body revealed that only 21 per cent of doctors were in support of the Expert Patients Programme; 58 per cent forecasted that it would increase the workload of general practitioners; 42 per cent doctors thought that it would increase NHS cost; and only 12 per cent doctors believed that it would improve the relationships between doctors and patients. (17) Many doctors in UK perceive that expert patients are demanding, unreasonable, and time-consuming patients. (18). It is possible that the term ‘expert’ creates confusion in the minds of both doctors and patients and disturbs the doctor-patient relationship. Coulter has suggested the term ‘autonomous’ in place of ‘expert’. (19). Muir Gray prefers to use the term ‘resourceful’. (20) According to government, expert patients are quite different from this typical stereotype of the dissatisfied, middle class consumer. Government says the aim of the Expert Patients Programme is not to make people with arthritis into rheumatologists or patients with Parkinson’s disease into amateur neurologists, setting them up to compete and bully with their doctors. The Expert Patients Programme is intended to provide skills and opportunities to develop confidence to improve the quality of life and work in association with health care professionals. Studies have shown that confident and educated patients will take less and better use of time of health care professionals. For instance, studies in randomized trials and improved versions of self management course showed that people with long term conditions shown consistent improvements in self efficacy, knowledge and use of self management behaviours. Studies conducted at Stanford university by K R Lorrig showed reduction in visits to doctors could be achieved. (21) Studies have also shown that when doctors prescribe medicines, patients’ desire and ability to take medicines are rarely taken into account (22). Moreover, in relation to taking medicines, individuals own convictions are said to be the most important deciding factor of whether and how medicines are taken. (23) Patients expertise is important because by understanding patients situations and views, the doctor in a better position to identify a solution. On the other hand, a recent review that is assigned by National Institute for Health and Clinical Excellence gave only cautious welcome to Expert Patients Programme. In UK, till date, there were four evaluations on the effectiveness of the Expert Patients Programme. Out of four evaluations, two were on arthritis self-management programme and the rest two were on chronic disease self-management programme including the national evaluation by the National Primary Care Research Centre in Manchester (24). The results of these studies were more or less similar; they are able to increase the patients’ self efficacy. The Expert Patients Programme failed miserably in reducing visits to hospitals and direct hospital admission of patients. Moreover, in a recent article, published in BMJ, Chris Griffiths and others argue that Expert Patients Programme improved self-efficacy in patients with long term conditions. But the changes in self efficacy were moderate. He further argues that the evaluation of Expert Patients Programme revealed that “use of health care remained stubbornly unaltered” (25). This is very disappointing as the Expert Patients Programme was introduced to reduce use of acute health care. The article suggests that more targeted programmes, which concentrate on people with particular chronic diseases, might be more useful than using a same model for all patients with chronic diseases. For instance, Pulmonary Rehabilitation Programme is useful in reducing fatigue and breathlessness in patients suffering from cardiac obstructive pulmonary disease (26). Still, in UK, fewer than 2 per cent of patients suffering from this disease have access to pulmonary rehabilitation each year. (27). So it is evident that user led programme in UK need further evaluation before they recommended over other health care programmes with established impact. According to some other critics, in U.K, the attempt to integrate the Expert Patients Programme to manage chronic disease to National Health Services had only limited success. (28) Another criticism of the programme is that it fails to address the emotional needs of the patients adequately. For instance, patients suffering from depression or the emotional aspects of bringing up a child with chronic conditions have not been addressed. U.K governments recent white paper, Our health, Our care, Our say’ outlined the governments future policy initiatives regarding chronic disease management. The UK government has converted Expert Patients Programme in to a commercial community interest company to develop, promote and deliver self-management programme. It is expected that the new company will create diverse and new programs which will address patient needs better. The Government feels that though the Government introduced the expert patients programme a few years ago. “Half the people with long term conditions are not aware of support or treatment options and do not have a clear plan that lays out what they can do for themselves to manage their condition better. If people have a clear understanding of their condition and what they can do, they are more likely to take control themselves.” (29) Conclusion The UK has introduced Expert Patients Programme with lot of expectations. Until the introduction of Expert Patients Programme in UK, the role of the patient in health care is quite passive. The introduction of Expert Patients Programme slightly changed the role of some patients in managing their condition. Some patients are empowered with information and provide ideas for their own treatment. But one should not forget that the main aim of the programme - to reduce the stress on NHS- has failed miserably. Moreover, NHS will find it difficult to train up many millions of patients with chronic conditions (approximately 17.5 million). The results of a randomised controlled trial to evaluate the clinical usefulness of self management programme for arthritis in patients with osteoarthritis is not very encouraging. In the randomised trial which included 812 patients, it is revealed that the self management programme of arthritis programme decreased the anxiety and increased self efficacy to manage symptoms, but it failed to reduce pain and visits to hospitals and has no significant effect on physical functioning of the patients (30). Moreover, there is always a possibility that some ‘expert patients’ demanding more than they can handle which will disturb doctor-patient relationship. So the need of the hour is the introduction of another suitable programme which can support many millions of patients with long term conditions. Works Cited 1. Chronic Disease Management. Australian General Practice Network [online] [2007?]; Available from: http://www.adgp.com.au/Site/index.cfm?display=333 2. Chronic Disease. World Health Organization [online] [2007?]; Available from: http://www.who.int/topics/chronic_disease/en/ 3. Chronic Disease and Their Common Risk Factors. 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Care for chronic diseases. BMJ; 2002. p. 913-4. Vol 325. 11. Donaldson L. Expert patients usher in a new era of opportunity for the NHS. BMJ. 2003. p. 1279-1280. Vol 326. 12. Lorig K, Sobel DS, Stewart AL, Brown BW, Bandura A, Ritter P, et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization. A randomized trial. Med Care 1999; 37: 5-14. 13. Donaldson L. Expert patients usher in a new era of opportunity for the NHS. BMJ 2003; 326: 1279-80 14. The British Liver Trust, Living a Healthy Life with Long Term Illness. LEADERS MANUAL. The Board of Trustees, Leland Stanford Junior University; 1999. 15. Kennedy A, Gately C, Rogers A. EPP Evaluation Team. National evaluation of Expert Patients Programme: assessing the process of embedding EPP in the NHS: preliminary survey of PCT pilot sites. 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Vol. 334. doi:10.1136/bmj.39227.698785.47 26. Lacasse Y, Goldstein R, Lasserson TJ, Martin S. Pulmonary rehabilitation for chronic obstructive pulmonary disease. Cochrane Database Syst Rev 2006(4):CD003793. 27. British Thoracic Society, British Lung Foundation. Pulmonary rehabilitation survey. [ 2003.] www.lunguk.org/downloads/BLF_pul_rehab_survey.pdf 28. Bury M, Ink D. The HSJ debate. Self-management of chronic disease doesn’t work. Health Serv J; 2005. p. 18-19. Vol. 115. 29. Our Health, Our Care, Our Say: A new direction for community services. Department Health [online] 2006 Jan. Available from: http://www.ehiprimarycare.com/tc_domainsBin/Document_Library0282/Community_care_white_paper_30-1-06.pdf 30. Marta Buszewicz, Greta Rait, Mark Griffin, Irwin Nazareth, Anita Patel, Angela Atkinson, Julie Barlow, Andy Haines, Self management of arthritis in primary care: randomised controlled trial, BMJ2006;333:879 (28 October),doi:10.1136/bmj.38965.375718.80 (published 13 October 2006 Read More