Volume 179 Issue 5

“Illness is the night side of life . . . Every one who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick”. — Susan Sontag Were we too successful in the 19th and 20th centuries? Public health and medicine vanquished many infections and injury as causes of death and disability in the developed world. But a “burden” of chronic disease now rises to challenge us: chronic disease affects at least one in ten Australians,1 and cardiovascular disease, chronic obstructive pulmonary disease and depression are endemic.2 It would be heartening to think that a Polypill might be the answer to our (chronic) ills.3 But the problem lies in the fundamental mismatch between 21st century morbidity and 20th century management — and a better match for the former is unlikely to be simple. We’re coming to realise, as the World Health Organization has, that “as long as the acute care model dominates health care systems, health care expenditures will continue to escalate, but improvements in populations’ health status will not”.4 Take Zajac’s provocative statement on page 250 of this issue, that “if supermarkets offered the same level of customer service as . . . public hospital(s), they would not survive”.5 His unique master proposal will turn hospital organisation (and staff leisure activities) on its head. MacDonald (doctor and BMJ Assistant Editor, who has scleroderma; page 267)6 and Fels (ex-chairman of the Australian Competition and Consumer Commission, who cares for a daughter with schizophrenia; page 268)7 eloquently attest to the deficiencies of our system in this special issue. How would a revamped healthcare system attuned to chronic illness look? Well, we have a dream. It is that Australia’s healthcare system will provide: quality Care that is Centred on the patient, Community-based, Coordinated, Continuous and Cost-effective, and utilises Clinical information systems Can the dream do any better than our current system?The dream is an evidence-based reality, albeit patchily applied, in several parts of the world. A systematic review of trials testing such chronic care models for people with diabetes showed that these improved health outcomes and lowered healthcare costs or use of health services.8 A comparison between Britain’s National Health Service and Kaiser Permanente, a Californian non-profit health maintenance organisation (HMO), showed that, although per capita costs were similar, patients in the HMO received more comprehensive and convenient primary care services, faster access to specialist services and inpatient treatment, and used acute hospital services less.9 These advantages were attributed to an integrated system (including chronic disease management programs and partnerships between physicians and administrators) that efficiently managed hospital use, competition and greater investment in information technology.9 The chronic care paradigm encompasses preventive and therapeutic care, and both must incorporate risk-factor management. As many of the top risk factors for disease burden (such as smoking and physical inactivity)2 involve behavioural change, working in continuous partnership with patients to find common ground is crucial. Such patient-centred care is not a new concept, says Bauman on page 253, but is becoming more evidence-based and can increase adherence to management, reduce morbidity and improve quality of life.10 Evidence is mounting, too, that well-coordinated interdisciplinary teams (intuitively desirable but only recently supported by evidence) can actually benefit people with chronic illness, if team members have the right training, clearly defined roles, and clinical and behavioural skills.11 The evidence that a healthcare system modelled on chronic care benefits its users is compelling. So what will it take to overhaul the system?That nothing succeeds like largesse is a belief dispelled by those who argue that it is the methods of health financing that must change for appropriate healthcare delivery.8,12 Visionary professional and political leaders are vital to the process. For beleaguered healthcare professionals at the frontline, Brooks weighs in with “task substitution” (page 260), freeing up some to focus on their particular expertise.13 Turf-threatening anathema to some, but perhaps it is more important to ensure that our patients get the best care possible. No one can be all things to all patients with chronic illness. Nair and Finucane explore the reforms needed for this postmodern approach on page 257.14 The quest requires a shared vision that echoes our dream: to serve society; to foster generalism and decrease fragmentation; to address the changing nature of illness and the changing nature of practice.15 But, as Nair and Finucane observe, reform will be difficult where health education systems are diffuse, divided and embedded in high-tech, acute or curative medicine, while low-tech chronic and caring medicine is left to drift.14 The supremacy of curative medicine also spills into our research agenda, where reductionist research currently holds sway. According to Professor A Pettigrew, CEO of the National Health and Medical Research Council (NHMRC) (personal communication), more than 60% of the objectives of current research supported by the NHMRC fall within our National Health Priority Areas (asthma, cancer control, cardiovascular health, diabetes, injury prevention and control, mental health, and arthritis and musculoskeletal conditions). Yet much of the supported research is likely to lead to high-tech curative paths. Considering its burden, chronic illness must shoulder its own defined and targeted research agenda: to identify the factors necessary for successful primary and secondary prevention, then evaluate community-tailored programs arising from these data; to explore integrated health delivery systems that embrace our C’s for chronic care management; to be scientifically rigorous and have meaningful performance indicators, allowing evidence-based decision making. The Box recounts the experiences of a man with complex chronic problems being let down by the current health system. In stark contrast is his treatment in a dream system evincing the seven C’s we espoused above. Our biggest success with chronic disease will be to live the dream by dragging our healthcare system into the 21st century. After all, “when you cease to dream you cease to live” (Malcolm S Forbes, publishing mogul and founder of Forbes magazine). Care for a man with chronic illness: as it is and as it could be The reality Lee, a 44-year-old retrenched bank teller, presents with lethargy and heartburn to his GP, Dr Bilius. The GP orders blood tests (normal, apart from mildly raised serum γ-glutamyl transferase levels) and refers Lee to a gastroenterologist for an endoscopy. This confirms mild reflux oesophagitis. Lee is prescribed proton pump inhibitors, which he ceases as soon as his symptoms resolve. One night, he presents to hospital with a sore neck after a minor car accident, and tells the medical officer, Dr Stressius, that his perpetual tiredness contributed to the accident. Dr Stressius notes that Lee smells of alcohol, his blood pressure is raised and there is no serious injury. Blood tests (duplicating previous tests) are performed, and Lee is discharged with a letter for Dr Bilius. Lee loses the letter, but returns to Dr Bilius, who spends 10 minutes chasing the hospital test result by phone. They run out of consultation time, and Lee is advised “not to drink too much”. He does not return until injured in a brawl a month later. The alternative: We have a dream . . . As Lee presents with a “new” problem, Dr Harmonius takes a full history and examination. A picture emerges of someone with dyspepsia, possible depression, alcohol misuse, high blood pressure, and financial difficulties. Dr Harmonius asks Lee to express his biggest problems (“feeling worthless”, “being tired all the time”) and goals (“to get a job”), then explains how his problems may be linked; a few of their adverse effects may obstruct his goals. Together, they decide on a management plan to meet his goals: appropriate tests (including a breath test instead of endoscopy,16 as per Dr Harmonius’s ESP — Evidence Support Program), cycling instead of driving, reducing alcohol intake, and possible medication. Lee is happy to return for regular review by Dr Harmonius. Lee is also referred to a community mental health worker for problem-solving skills and strategies to handle his alcohol problem. He chooses to have his blood pressure monitored by the practice nurse (instead of home telecare17 or ambulatory monitoring) while he’s unemployed. Each time Lee visits Dr Harmonius, the practice nurse initially checks his blood pressure, medications and adherence. Each healthcare professional involved in Lee’s care charts findings and interventions in a central electronic database, which they can access with Lee’s consent. At hospital after Lee’s car accident, the medical officer, Dr Dextrous, notes from the database that Lee has had the appropriate tests to exclude organic causes of tiredness. Dr Dextrous’s own database entry is emailed to Dr Harmonius.

Mabel Chew · Martin B Van Der Weyden

Disease prevention, access to services, and continuity of care are the important areas Health inequities are systematic differences in health status between different groups in the population, and may or may not be changeable. Health inequity is taken here to mean inequalities that “are unnecessary, avoidable, unfair and unjust”.1 Inequities in health usually relate to socioeconomic position, ethnicity or sex. Examples associated with chronic disease in Australia include: Higher mortality rates from cardiovascular disease, diabetes, and renal disease among Aboriginal and Torres Strait Islander populations;2 Higher mortality rates from coronary heart disease, stroke, and chronic respiratory conditions among lower socioeconomic groups;3 and Higher mortality rates from vascular diseases, suicide and accidental death, and lower survival from cancer among people with mental illness.4 One estimate of the size of this effect is that, if disease and injury incidence and mortality in all areas were reduced to the level in the least disadvantaged quintile, the potential savings in lost years of “healthy” life would be 17% of the total disease burden.5 Only some inequalities in mortality are potentially avoidable through the activities of the health and related sectors; analysis of these can indicate opportunities to reduce health inequities. Interventions against potentially avoidable mortality can be divided into three levels: primary (preventing a condition from developing; eg, by treating hyperlipidaemia), secondary (preventing the worsening of a condition at an early stage; eg, screening for and treating early disease), and tertiary (curing disease or extending life through treatment).6 An analysis of trends in avoidable deaths in New South Wales from 1980 to 2000 showed: The burden of potentially avoidable mortality decreased overall and across all socioeconomic status (SES) groups during the 20 years; however, the rate of reduction was higher in the highest SES group than in both the lowest SES group and the rest (middle 60%) of the population. Ischaemic heart disease, lung cancer and colorectal cancer contributed most to this burden in 2000. About half the potentially avoidable deaths are preventable through primary prevention, a quarter through secondary prevention (mainly ischaemic heart disease, stroke, and colorectal cancer), and a quarter through tertiary prevention and rehabilitation (mainly ischaemic heart disease). The proportion of primary preventable causes rose slightly, indicating a relatively greater reduction in causes associated with secondary and tertiary interventions during the period.7 Information on inequities other than mortality is not extensive in Australia, owing to lack of suitable data collections. One study suggests timely and effective ambulatory care (encompassing preventive care and early disease management) may reduce the risk of hospitalisation by preventing an illness, controlling an acute episodic illness, or managing a chronic condition.8 Hospitalisation rates in NSW and Victoria for conditions potentially avoidable through ambulatory care were similar (6.2% and 7%, respectively).7,8 The five most common such conditions were angina; asthma; chronic obstructive pulmonary disease; convulsions and epilepsy; and ear, nose and throat infections. Targeting disease preventionPotential health system responses to health inequities include health promotion, higher treatment levels for targeted populations, more effective treatment (eg, given earlier, or with better compliance) and improved use of resources through better coordination and information sharing.9 The data above indicate that, although a multi-pronged approach will be necessary, the largest population benefit will be through making prevention programs more effective. Well-documented differences in chronic disease risk behaviours include higher prevalence of smoking, obesity, and high blood pressure in low SES groups.3 How prevention strategies can be more effective among low SES groups is the subject of much controversy and little systematic research. Many authors believe that traditional approaches to health promotion will not be effective because the capacity to make “healthy” choices is strongly linked to environmental and social factors that accompany poverty and disadvantage. Determinants of health can be considered at upstream (social, physical, economic and environmental), midstream (psychosocial and health behaviour), and downstream (individual) levels.10 Health promotion within clinical services has traditionally focused on the individual level, although public health preventive activities have generally had the most effect when implemented at upstream levels. Given the limitations of the existing evidence for reducing socioeconomic health inequities, interventions that have been effective with other health problems are a good starting point.11 Targeting access inequitiesAustralian data on potential differential access to services are limited and largely confined to geographic access for people in rural and remote areas. There is no whole-of-population dataset that systematically looks at the quality and effectiveness of care for chronic disease in groups experiencing health inequities. However, studies suggest there is much room for improvement. For example, in 98 000 general practitioner encounters, holders of healthcare cards (who are on aged, disability, unemployment or other low-income pensions) were more likely to have chronic diseases and fewer preventive measures (such as Pap smears).12 At the tertiary care level, patients of lower SES had less access to invasive procedural treatments following admission for coronary heart disease in Queensland.13 As our healthcare system is oriented to acute care, chronic care treatments that reduce disability (eg, joint replacement surgery) are likely to have lower priority and therefore be more difficult to access. Such inequities of access may be greater for dental care, physiotherapy, speech therapy, dietetics and podiatry, which are not subsidised outside public hospitals. Thus, in redistributing resources for health problems where inequities exist, it is important to ensure that the investment is made where the effect is likely to be greatest. Targeting continuity of careAchieving continuity of care across healthcare sectors is a major problem in the care of people with chronic disease, especially those disempowered by way of income, language, or culture. Delivery of care and support services by multiple professionals and agencies compounds the problem. Appropriate rationalisation of such arrangements and good coordination of care can lead to better outcomes. Any attribute of our healthcare system that impairs any health outcome will be compounded for people who are poor or otherwise disadvantaged. Indeed, it will be difficult to redress health inequities for people with chronic disease without addressing the broader problems in the system. However, without specific attention to health inequities in research, planning and policy (see Box), the current differences will not go away, and may even increase. Requirements for addressing health inequities in the care of people with chronic disease Better data on health inequities across the continuum of care, to produce key indicators for regular monitoring. The available data already indicate that a high priority should be given to prevention and management of cardiovascular disease. Appropriate use of data in decision making. The National Health and Medical Research Council (NHMRC) has recognised the potential for clinical practice guidelines to affect health inequities both positively and negatively, and has produced a guide on how to use socioeconomic evidence when developing guidelines.14 Greater investment in prevention, with particular attention to disadvantaged groups. Funding for programs needs to recognise the lack of primary healthcare infrastructure to deliver prevention in many disadvantaged communities and the need to make longer-term funding commitments (5–10 years) for such programs. Local or regional initiatives to ensure active coordination of all care. Funding mechanisms that provide better access to non-medical therapies such as podiatry and dietetics.

Andrew J Wilson PhD, FRACP · Alan D Lopez MSc, PhD · Brian F Oldenburg BA, PhD

It is time for debate to become policy Recognition is growing worldwide that chronic, non-communicable disorders (often, but not exclusively, associated with ageing) and hidden disability are acting in concert with burgeoning technologies to make healthcare more expensive. As communicable diseases are controlled, and social and economic conditions develop to support longer life expectancy, the challenge of preventing and managing chronic disease grows greater. A recent report of the Australian Institute of Health and Welfare confirms that Australia is facing an increasing economic and social burden because of chronic diseases and their associated risk factors.1 Twelve chronic diseases and conditions accounted for an estimated 42% of the total disability-adjusted life years (DALYs) lost in Australia in 1996, and all such diseases and conditions accounted for about 80% of DALYs.2 The report noted the difficulties of defining chronic disease, and concluded that “. . . though open-ended, it is usually defined by a minimum duration (for example diseases lasting 3 or 6 months, continuously or intermittently, may be termed chronic)”.2 Illustrating the semantic divide, a recent report of the United States Institute of Medicine focused on the inadequacy of care of chronic conditions, and defined a chronic condition as one which “. . . requires ongoing medical care, including monitoring, treatment, and coordination among multiple providers, limits what one can do; and is likely to last longer than 1 year.”3 In the mid-1990s, the National Health Target strategies were developed by the Australian government, following the Better Health Commission’s report in 1987. Since then, much more has been written on the need for more efficient and better-coordinated policies for preventing and managing chronic conditions in Australia. A range of viewpoints, disease targets and high-level overviews have emerged in proposals by the National Health Priority Action Council, the National Public Health Partnership, the Department of Health and Ageing Sharing Care Initiative in the 1999–2000 Budget, the Rural Chronic Disease Initiative, the Strategic Research Development Committee of the National Health and Medical Research Council, and advisers forging the next Australian Health Care Agreements.4 US leaders in the development and evaluation of integrated models of care for people with chronic illness, such as Kaiser Permanente, and Group Health Cooperative of Puget Sound, have shown that the burden of chronic disorders can be reduced by informed primary care practitioners and patients working together, supported by evidence from modern information technology.5 Yet in 2003, when other nations have moved beyond talk into detailed proposals for reforming the prevention and management of chronic conditions, Australian governments still debate.3 Gaps in our health policy research into preventing chronic illness and managing and financing chronic care are wide, confirming the lament of a recent editorial in this Journal.6 Three of these gaps deserve special mention. First, while some prevalence rates and use of hospital resources have been estimated, accurate data are lacking about how the total direct costs of managing chronic conditions vary with age, number of risk factors or number of comorbidities. Recent US research provides the first indications of the increases in direct costs as the number of risk factors increases. The increased costs are pronounced for prescribed drugs, and less so for hospital and medical services.7 Disability is a major driver of the direct and indirect costs in an ageing population.8,9 Five conditions (mood disorders, diabetes, heart disease, hypertension and asthma) accounted for 49% of direct healthcare costs in the United States in 1996, and for 42% of illness-related indirect costs.10 To obtain more accurate projections of future care costs, we need new coding systems that measure comorbidities, and linked data sets provided by all care providers and payers. Second, better data about the costs of the prevalent risk factors listed in the Australian Institute of Health and Welfare report1 are essential. The World Health Organization has laid out the empirical rationale for such a campaign against risk factors.11 With these cost data, the economic case for their prevention can be opened to public debate. Economic incentives to the community to reduce their risk and look after their health have not been conspicuous in Australia. Health economists have generally argued against investments in public education and information that might modify demand for healthcare in favour of government regulation of the supply side. They may wish to adapt their arguments in the light of evidence on the impact of demand-side strategies in US chronic disease management trials.12 Third, there is no clear evidence of the success of initial attempts to organise and pay more efficiently for the management of chronic conditions. The first trials of coordinated care in Australia were not designed, managed or funded adequately to demonstrate significant achievements in health and functional status, or cost reductions compared with usual care. The findings from the evaluations of these trials reflect these limitations13 and contrast with the results of the US Medicare Coordinated Care Demonstration14 and with US evaluations of integrated care models, such as the Program of All-Inclusive Care (PACE) for the frail elderly,15 a small subset of the chronically ill. In Australia, the second set of trials of coordinated care is under way. Unfortunately, private health insurers are not much involved. In fact, there is no incentive in the current Reinsurance Pool for private health insurers to provide coordinated care for their members with chronic disorders. This pool reimburses funds whose members receive high cost, lengthy hospital care, while extracting payments from funds with lower cost members. Some state governments, most notably the New South Wales government through the work of the NSW Health Council, have declared an interest in managing several chronic conditions, such as diabetes, chronic respiratory disorders and heart failure. Regrettably, current funding mechanisms and political timidity prevent anything as radical as cashing out all federal payments to allow the states to implement risk-rated capitation funding allocated to the continuum of care needed by chronically ill people. It is time to bring the private healthcare sector into the policy review process. The recent report of the US Institute of Medicine identified the need to make best use of all resources, public and private, in a mix of new types of care, using adequately funded demonstration projects that had the appropriate mix of information technology, evidence-based clinical practice guidelines, coordination of care by multidisciplinary teams, and linkage of universities into the learning process.3 The US government policy review strategy for coordinated care differs markedly from the Australian strategy in one other respect. In July 2000, the lead US government agency sought public comment on both the contents of its proposals and the design features of the proposed demonstrations of coordinated care before it announced awards for 15 new trials in 2002. Most comments identified how the fee-for-service payment system of US Medicare would thwart the program objectives, and, as a result, the payment system for the new trials is a monthly all-inclusive rate covering coordination with community-based services, transportation, drugs, non-covered home visits and medical equipment.13 In Australia, we have achieved reductions in heart disease mortality since the mid-1960s with a combination of prevention and treatment. This should inspire us to believe that we can do well in the future care of patients with chronic disease. Tobacco control, nutrition policies, cancer screening and preventive treatment for those with established cardiovascular disease are examples of what we have achieved to date. We now need larger injections of political will. The early prevention and better coordinated management of chronic conditions will require changes in the methods of financing and paying for healthcare, inspired and supported by strong leadership from our politicians.

Paul F Gross BE, MEngSc, MPA · Stephen R Leeder PhD, FRACP, FFAPHM · Milton J Lewis MA, PhD

The Australian Institute of Health and Welfare, using the definition “a disability which restricts a child’s ability to perform tasks associated with daily living”,1 reported that in 2002 almost 300 000 Australian children (7.5%) had a disabling chronic illness. The disability was primarily physical in 54% of children, and intellectual/developmental/behavioural in 46%. Asthma comprised 31% of the physical conditions, the rest being other respiratory diseases and diseases of the ears and nervous system.1 It is estimated that, at any given time, 23% of Australian children have recent asthma, 10% have eczema, and 15% have emotional/behavioural problems. For comparison, 0.5%–1% of the whole population has epilepsy, of which about 60% begins in childhood; about two per 1000 schoolchildren have juvenile-onset diabetes mellitus; and the incidence of childhood cancer is about 14 per 100 000, with a 75% survival rate.1 Although advances in technology have greatly improved survival for many children (eg, those born prematurely, or those with cancer or cyanotic heart disease), they have also created a population of children living with disabilities. Without belittling these technological achievements, it is important that the quality of life of survivors also be considered. For example, over 50% of extremely low birthweight babies (500–999 g) now survive to discharge, but 15%–20% of survivors have a major disability (cerebral palsy; visual, auditory or intellectual impairment), and at least half the remainder have significant learning difficulties.2 For all children with disabilities, limitations to schooling, mobility and communication constitute the most significant restrictions of daily activity.1,3 Psychosocial impact of chronic conditions. Chronic conditions put increased stress on the child and the child’s parents and siblings. Children with any chronic condition have twice the risk of developing mental health disorders of healthy children, and three times the risk if they have an accompanying disability.3 The clinical “severity” of the condition is not necessarily the major psychosocial prognostic factor. For example, the stress on a family of caring for a child with moderate or severe eczema exceeds the stress related to insulin-dependent diabetes mellitus.4 Conditions that disrupt sleep for the child and the parents are possibly the most stressful. A child’s view of his or her quality of life may differ from the views of parents and others.2 Children born with chronic conditions may be more accepting of handicap, even while recognising their difference from other children,5 and they often adjust better to visible handicaps than to hidden ones.3 It is important to emphasise what disabled children can do, rather than what they cannot do. One positive approach to chronic illness is to consider the factors that enable most children and families with chronic illness to cope as well as they do. It has been advocated that we should focus on interventions to improve this resilience, although there is a dearth of supportive research.3 Robert Louis Stevenson, who had pulmonary tuberculosis, said that “life is not a matter of holding good cards, but of playing a poor hand well”. The prognosis for a child with chronic illness is highly dependent on how the family functions. The illness places stress on parents and siblings, who may themselves become exhausted and develop psychological problems such as anger and depression. It is vital to communicate well with the parents or carers of chronically ill children, and not to forget the siblings, whose needs are easily neglected if parents focus too much on the sick or disabled child. Avoidable risk factors for psychosocial problems include prolonged ambiguity about the diagnosis and poor communication to parents and siblings. Other risk factors include stressors such as moving house or changing schools, as well as the known underlying risks of low socioeconomic status, marital discord and parental mental health problems.3 Warning signs of distress in children include problems at school or in social relationships; low self-esteem, manifested as self-blame, helplessness or hopelessness; and denial, including poor compliance with treatment. Psychological problems may manifest as anxiety, depression, oppositional behaviour, suicidality or disorders of eating, conduct or sleep.3 Interventions that have been shown to be beneficial include family therapy, supportive counselling of children and parents, and the use of supportive protocols such as those blending advocacy and liaison work.3 Overall adjustment is better with family-centred interventions and when needs are met in the home.3 Prevention. Disruptive influences in early infancy can be particularly damaging to later emotional and psychological development. Studies are under way to see if strategies to improve the early childhood environment (eg, parenting support and universal early childhood programs) can effectively optimise development and prevent chronic mental health problems. Recommendations. Consensus guidelines, developed by an expert panel and based on best available evidence,3 include the following recommendations: Practical support. Families need clear communication, with healthcare professionals and with each other; opportunities for choice of supports; and practical assistance with finances, transport, respite care and recreation. Additional support may be needed for staff and peers at school. Many parents report benefits from involvement in self-help groups. Multidisciplinary teams. Assessments by well qualified teams can identify areas of immediate and future need and can improve communication between professionals, children and families. Self-determination. Young people with chronic conditions should be allowed to decide which professionals coordinate their care, what form of treatment they want, and what part they wish to play in their own treatment.

David Isaacs MD, FRACP, FRCPCH · Jill R Sewell MB BS, FRACP

Thirty years ago, Pless and Pinkerton1 highlighted the fact that, although children and adolescents experience a diverse range of illnesses, those with chronic conditions have great similarities in their life experiences and in the preventive and rehabilitative aspects of their lives. Since then, the intensity of treatment programs recommended for managing adolescent chronic illnesses has increased greatly. As a result, the daily lives of adolescents with chronic illness are often very different from those of their healthy peers. Adolescents with a chronic illness have usually lived with the illness for much of their lives. Although there is generally no prospect of a cure, they have to complete time-consuming and inconvenient treatment tasks every day. Treatment regimens now recommended for managing chronic illnesses are intensive and often tedious, but there is evidence that they can lessen the impact of some disorders (eg, in adolescents with diabetes, good metabolic control is associated with better quality of life).2 As adolescents take over management of their illness from their parents, they have to decide to what extent they will comply with treatment. Young people who develop a chronic illness during adolescence often have difficulty accepting their illness, and treating them can be quite a challenge for physicians. In a recent two-year prospective study of chronic illness conducted by our group,3 we found that adolescents with diabetes did not consider the restrictions on their regular food or drink intake a large inconvenience. However, managing their illness (including injecting insulin and monitoring blood glucose levels) took them an hour a day, on average. Adolescents with cystic fibrosis spent even longer (1.5 hours a day) managing their illness: typically, they began each day by consuming a large quantity of tablets, followed by other tasks including physiotherapy, the use of inhalers and nebulisers, and possibly overnight feeding. Managing chronic illness can be particularly difficult for adolescents while at school. Secondary schools find it hard to be flexible in accommodating students’ healthcare needs and doing so in a way that protects their privacy and dignity. Adolescents and their families feel frustrated when they have to explain their needs repeatedly to new staff or in new situations such as camps and excursions. These problems can be exacerbated when young people need the support of a visiting nursing service. Nursing roster changes may put adolescents in the position of having to explain their treatment needs more than once to an unfamiliar nurse in a school setting that is not designed to provide healthcare. The combined impact of their health support needs and increasing academic demands increases the risk that adolescents with chronic illness will leave school early and not fulfil their vocational potential. Chronic illnesses adversely affect adolescents in a range of ways. For example, the impact of recurrent asthma symptoms is widespread, with exercise-induced dyspnoea often limiting participation in sport and daily exercise. For those with diabetes, adolescence is perhaps the most challenging time for illness management: the physiological insulin resistance of puberty is exaggerated in adolescents with diabetes, and the first subclinical signs of microvascular complications are starting to appear. Adolescents with cystic fibrosis are more likely to be shorter and thinner than their peers and to have more difficulty with issues of intimacy and sexuality. Although most are socially competent, they tend to take less part in social activities outside the home.4 Epidemiological studies have shown that adolescents with chronic illness have twice the rate of mental disorders as their healthy peers.5 While there is evidence that intensive therapy improves the wellbeing of adolescents with chronic illness, careful organisation of daily activities is necessary to complete all the treatment tasks. This requirement conflicts with adolescents’ desire to participate in spontaneous activities being enjoyed by healthy peers and to experiment with new autonomy and freedom from parental control. A major challenge for those responsible for developing new treatment regimens is to achieve a partnership with adolescents to ensure that new programs are both effective and acceptable to the adolescents who will be responsible for implementing them.

Michael G Sawyer MB BS, PhD, FRANZCP · Jennifer J Couper MB ChB, MD, FRACP · A James Martin MB ChB, MRCP, FRACP · J Declan Kennedy MD, FRCP, DCH

The prevalence of degenerative chronic illnesses is low in Australian adults aged 25–44 years. Using the estimated number of years of life lost due to disability as a measure of the burden of disability, the most important chronic disabilities for this age group can be attributed to alcohol misuse, depression and anxiety disorders (particularly generalised anxiety disorder and social phobia).1 According to Australian general practice data collected in the 1999–2000 BEACH (Bettering the Evaluation and Care of Health) survey, a disproportionately high number of mental-health problems are managed in the 25–44 years age group (26% of all general practice consultations, yet 33% of all encounters involving one or more mental-health related problems, were for 25–44-year-olds).2,3 Excessive alcohol consumption and depression are also major risk factors for two of the principal causes of mortality in this age group — road traffic accidents and suicide. This age group coincides with the peak phase of life, during which most Australians would anticipate marrying, raising a family, purchasing their first home, advancing their careers and laying down financial security for the future. Depression, anxiety disorders and alcohol misuse have the potential to severely interfere with the achievement of these goals. The psychological, emotional and financial consequences affect individuals and their families, as well as the community (directly, via treatment and hospitalisation costs, and indirectly, via work absenteeism and reduced productivity).4,5 This is in addition to the known potential physical complications of these conditions. The impact of depression, anxiety disorders and alcohol dependency is confounded by the fact that each condition can coexist with the others, and indeed with many other harmful lifestyle factors and chronic illnesses. There is some evidence that depression is underdiagnosed and undertreated in primary-care settings,4 and this is almost certainly the case for anxiety disorders and alcohol misuse. It is also of concern that many people with these conditions do not regularly seek medical assistance.6 Given that various successful evidence-based treatments are available to assist in managing these conditions — including psychosocial interventions (cognitive, behavioural and/or interpersonal psychotherapies) and a range of pharmacotherapies5,7 — we need to ask ourselves why so many affected individuals do not seek professional assistance, or resist treatment. Issues that may prevent consumers from accessing effective management include lack of recognition of symptoms, lack of awareness of the treatments available, a mismatch between consumers’ and health professionals’ views of treatment, poor compliance with prescribed therapies, fear of stigma, and fear of dismissal from significant others.5 Healthcare providers, on the other hand, may be prevented from recognising and managing mental-health disorders by lack of skills/training, time pressures in general practice, and perceived lack of access to advice from specialist mental-health services.5 Effective management of these chronic conditions requires a coordinated response involving individuals, families, communities, workplaces, health professionals, health organisations and governments. The ability to recognise early symptoms, and to identify contributing psychological and social risk factors, as well as comorbidities and complications4 is important for health professionals, public health planners, and the general public. Guidelines from the Royal Australian College of General Practitioners recommend that clinicians should be constantly vigilant for depressive symptoms in high-risk patients and should ask all patients aged 14 years and over about the quantity and frequency of alcohol intake.8 It is essential that these conditions be destigmatised, and that patients have access to affordable therapies provided by adequately skilled health professionals within a reasonable timeframe. Finally, while chronic-disease risk factors such as obesity, tobacco smoking, hypercholesterolaemia and physical inactivity are responsible for a much greater burden of morbidity and mortality in people over 45 years than in younger age groups, a substantial number of 25–44-year-olds have at-risk levels of these factors.1 Opportunistic health promotion is encouraged when young adults present for other reasons in general practice.

Marie-Louise B Dick MB BS FRACGP MPH

Middle age is when the accumulated interactions of genetic predisposition, environment and lifestyle commonly start to impact on health. Ischaemic heart disease and chronic obstructive pulmonary disease, for example, often become symptomatic in these years. The World Health Organization predicts that by 2020 these two conditions will be among the five leading causes of disease burden globally. Ischaemic heart disease is already the leading cause of disability in Australia and is the most common cause of death among Indigenous Australians. Over the past three decades, it has become clear that aggressive medical and surgical treatment of ischaemic heart disease improves quality of life and reduces mortality.1 Medical treatment improves quality of life in chronic obstructive pulmonary disease.2 Exercise rehabilitation and lifestyle modification are beneficial in both conditions, even after symptoms develop. Stopping smoking remains the key to reducing mortality from chronic pulmonary disease, and is similarly important in ischaemic heart disease. The WHO has pointed out that across the world most healthcare systems fail to implement fully the knowledge we already have to redress the growing problem of chronic illness. Five deficiencies are identified: Care is fragmented and focused on acute and emergent symptoms; The patient’s role in management is not emphasised; Follow-up is sporadic; Community services tend to be ignored; and Prevention is underused. Although there have been significant developments in Australia in recent years, including the introduction of Enhanced Primary Care Medicare items (which allow general practitioners to devote more time to managing chronic illness), as well as initiatives by states and territories, the deficiencies identified by the WHO are all too evident in many parts of the Australian healthcare system. And yet we know what is needed.3 Continuity of care, by a single general practitioner if possible, can provide the basis of a therapeutic alliance and enhance adherence to an agreed treatment plan. In a condition such as ischaemic heart disease, which may require treatment with multiple drugs, the patient–doctor relationship is an important factor in promoting and sustaining adherence.4 In chronic obstructive pulmonary disease, where the single most effective treatment is lifestyle change, many patients are helped by support in goal setting, action planning and discussion of the reasons for relapse. Patients and their families need access to information and resources to help them deal with chronic illness on a day-to-day basis, as well as contingency plans for when problems arise. Optimal management of some chronic diseases, such as diabetes mellitus and asthma, depends on patients having the means for self-monitoring their condition. Most chronic diseases require regular medical review for optimal management, and evidence suggests that active and sustained follow-up is associated with improved outcomes.3 Of course, the care of chronic disease requires input from patients, family and non-medical health professionals, as well as from general practitioners and other specialists. If this extended healthcare team is to function optimally, then all members require timely access to relevant information. Clinicians must be able to obtain details of treatment and the results of investigations by others, and emerging solutions such as the electronic health record will fill this need. As we wait for this technology to mature, innovations such as the New South Wales patient-held “My Health Record” plug a significant gap. These developments alone will not rectify the appallingly high morbidity and mortality of Indigenous Australians in the 45–64-year age group. Indeed, it is inappropriate to describe these as the “middle years”, when most Aboriginal people die during them. It is a national disgrace that the median age at death of Indigenous Australians remains almost a quarter-century less than that of the remainder of the population. However, there are some promising developments. The revised National Strategic Framework for Aboriginal and Torres Strait Islander Health is expected out this year; it is hoped it will build on and expand the scope of the current Primary Health Care Access Program, and will also look beyond the health sector to the need for a national infrastructure plan to rectify the continuing deficiencies in many communities in water supply, sanitation, education and other basic services.5 The Aboriginal and Torres Strait Islander Health Workforce National Strategic Framework has already been published;6 if fully implemented, this will do much to enhance the capacity of the health sector to respond to the needs of Indigenous Australians. In addition, the health of the population as a whole will be greatly improved if politicians find the will to do far more to reduce smoking and to combat the growing epidemic of obesity in Australia today.

Tim Usherwood MD, FRACGP, FRCP

The majority of older people remain in good health until a relatively short period before their death. Most of those who acquire chronic illness tend to have only mild to moderate disability and are not dependent on others for life’s basic tasks. Common chronic diseases associated with mild disability include arthritis, hypertension, ischaemic heart disease and diabetes mellitus. However, the minority of older people who have chronic illness associated with severe disability have a large impact on our healthcare and welfare systems. Depression, Alzheimer’s disease and other dementias, stroke with residual disability, and various progressive neurological disorders contribute greatly to the overall burden of disability experienced by our society. Although circulatory, neoplastic and respiratory diseases are the most common causes of death, nervous-system disorders contribute the greatest proportion of years of life lost to disability in the older population.1 Disability-adjusted life-years (DALYs), which combine the effects of shortened life expectancy and years lost to disability, enable an assessment of the overall burden of illness. In terms of DALYs, ischaemic heart disease and stroke rank first and second, respectively, in both sexes, followed by lung cancer in men and dementia in women.1 While the experience of chronic illness is different for each individual, its impact may be experienced in two broad dimensions, depending on the nature of the illness and the type of disability it produces. The patient may experience predominantly somatic symptoms, such as dyspnoea, pain, weakness, lethargy or nausea. The resulting discomfort interferes with enjoyment of life. Many people with conditions such as cardiac, respiratory and neoplastic disorders may remain relatively independent, at least in the confines of their own home, until late in the progression of the illness. However, they live with the constant threat of exacerbation and associated visits to hospital, and uncertainty about their life expectancy. Our challenge with these patients is to ameliorate distressing symptoms, halt progression of the disease, and prevent complications and unnecessary hospital admissions. On the other hand, the patient experience may be dominated by disability and handicap. Patients in this situation become distressed by their lack of independence in various life skills, which ultimately reduces their ability to survive in their “usual” living environment. Chronic conditions such as stroke and degenerative neurological disorders cause profound disturbances of personal functioning that increase as the illness progresses, such that dependence on others becomes continuous. Basic tasks such as walking, bathing, dressing and feeding become impaired. The situation is exacerbated by the presence of cognitive dysfunction. Ultimately, survival at home is dependent on the support of family members, often with the assistance of community services. It is these illnesses that drive the demand for nursing home places. Some 70% of residents of nursing homes have moderate to severe cognitive impairment. These clinical scenarios highlight the predicament that faces all societies as the proportion of older people increases. With smaller families, and greater numbers of people entering old age either divorced or never married, there is a considerable challenge to provide the care that is so vitally needed. The paucity of family-member carers will be accompanied by declining numbers of people in the workforce. Similarly, the number of taxpayers who provide funds for care will decline in relation to those requiring it.2 Ultimately, the challenge will be to minimise the period of discomfort and dependence on others towards the end of life. This will require advances in prevention, management of disability and technology to reduce the reliance on others. It will also require robust social service support networks and public utility infrastructure that are sensitive to the needs of elderly people and provide adequate high-quality residential care for people who can no longer live independently.

Leonard C Gray PhD FRACP · Ian A Scott FRACP MHA MEd

Information and communications technology (ICT) is increasingly being used in management of chronic illness to facilitate shared services (virtual health networks and electronic health records), knowledge management (care rules and protocols, scheduling, information directories), as well as consumer-based health education and evidence-based clinical protocols. Common applications of ICT include home monitoring of vital signs for patients with chronic disease, as well as replacing home visits by nurses in person with telemedicine videophone consultations. A patient-managed Home Telecare System with integrated clinical signs monitoring, automated scheduling and medication reminders, as well as access to health education and daily logs, is presented as an example of ICT use for chronic disease self-management. A clinical case study demonstrates how early identification of adverse trends in clinical signs recorded in the home can either avoid hospital readmission or reduce the length of hospital stay.

Branko G Celler PhD · Nigel H Lovell PhD · Jim Basilakis MB BS, Research Associate

Seven of every 10 general practice encounters are for chronic conditions. Three common chronic conditions managed by GPs are depression, diabetes and asthma. Two of these are National Health Priority Areas (NHPAs), while depression is the focus of the mental health NHPA. General practice care for people with depression is being strengthened by the “Better outcomes in mental health care initiative”, which includes a 3 Step Mental Health Process — assessment, mental health plan, and review. GPs have the opportunity to screen patients for diabetes and manage their condition. For those with risk factors who screen negative, GPs are well placed to encourage lifestyle interventions. Two of the four components of the National Integrated Diabetes Program focus on general practice. The Asthma 3+ Visit Plan, which incorporates diagnosis and assessment of asthma, development of a written asthma plan, and review of asthma management, has been shown to improve GPs’ management of asthma. These initiatives to improve general practice interventions for chronic illness, although welcomed, put further pressure on already overstretched GPs coping with multiple changes in the primary-care sector.

Bronwyn M Veale

Public hospitals designed for the past are not changing rapidly enough to meet the needs of the future. Changing work practices, increased pressure on bed occupancy, and greater numbers of patients with complex diseases and comorbidities will determine the functions of future hospitals. To maximise the use of resources, hospital “down times” on weekends and public holidays will be a distant memory. Elective surgery will increase in the traditionally “quiet times”, such as summer, and decrease in the busy winter period. The patient will be the focus of an efficient information flow, streamlining patient care in hospital and enhancing communication between hospitals and community-based health providers. General and specialty units will need to work more efficiently together, as general physicians take on the role of patient case managers for an increasing proportion of patients. Funding needs to be adequate, and system management should involve clinicians. Safety will be enshrined in hospital systems and procedures, as well as in the minds of hospital staff. If these changes are not implemented successfully, public hospitals will not survive in the future.

Jeffrey D Zajac MB BS, PhD, FRACP

Patient-centred care is about sharing the management of an illness between patient and doctor; it is not new but is increasingly evidence-based, especially for chronic problems such as diabetes, asthma and arthritis. Systematic reviews show that patient-centred care results in increased adherence to management protocols, reduced morbidity and improved quality of life for patients. Key features of the doctor–patient interaction are shared goal setting, written management plans and regular follow-up. Supportive community-based services and programs, combined with healthcare system commitment, are also required to make this approach effective in improving population health.

Adrian E Bauman MPH, PhD, FAFPHM · H John Fardy DRCOG, FRACGP, GradCertPH · Peter G Harris FRACGP

Medical education must adapt to change if it is to remain relevant to the needs of doctors, patients and society. Ideally, it should anticipate and lead change. Undergraduate education remains rooted in urban medical schools where the focus is on acute disease, while most graduates spend their working lives in the community, dealing mainly with chronic health problems. Medical graduates need to acquire specific knowledge, skills and attitudes if they are to effectively manage people with chronic disease. Strategies that create a better balance between education in acute and chronic disease are being developed. These include a transfer of clinical teaching to community and nursing home settings and the development of interdisciplinary teaching.

Balakrishnan R Nair FRACP, FRCP · Paul M Finucane FRACP, FRCPI

Healthcare workforce shortfalls require a rethinking of models for delivering care to people with chronic disease. Chronic disease needs to be managed by a multiskilled team of healthcare professionals with specialist input. Education at undergraduate, graduate and postgraduate levels needs to prepare healthcare professionals for this new paradigm. Some tasks currently seen only as part of a doctor’s purview could be performed by other trained professionals to allow doctors to concentrate on more appropriate activities. We need to explore new collaborations to deliver multidisciplinary healthcare for chronic disease and evaluate these for patient outcomes and cost effectiveness.

Peter M Brooks FRACP, FAFRM, FAFPHM

Sex remains an important contributor to quality of life in many patients with chronic illness and their partners. The effects of chronic illness on sexuality are multifactorial and can impact on all phases of sexual response. Sexual dysfunction and dissatisfaction in chronically ill patients are underdetected and undertreated because of barriers to doctor–patient discussion about sex and lack of medical training in human sexuality. For doctors to become more motivated to broach the topic of sex, they need to recognise that people may be sexually interested even though they are old, ill or disabled. The PLISSIT model provides a graded counselling approach that allows doctors to deal with sexual issues at their own level of expertise and comfort.

Rosemary A McInnes MB BS, FACSHP

“Accept and adapt and never give up” I had to think long and hard before I “came out” to the world that I had scleroderma. Since my diagnosis 8 years ago, I have tried to carry on as normal and not let my “label” affect my life and work. However, when I wrote my editorial discussing a new scheme I had set up for doctors who have chronic illnesses (Box),1 I wanted to show solidarity with them. Because, believe me, I know what it is like. The chronic illness matching scheme When I was first diagnosed with scleroderma, it would have been helpful to talk to other doctors with the condition to discuss how they were coping and listen to any advice they had about work conditions and career options. It would also have been useful to talk honestly to another doctor working in some of the more feasible career areas before launching myself into them only to discover too late that they were not suitable for my health needs. The aim of the scheme is to provide the opportunity for doctors who have a chronic illness or disability to receive informal careers advice from another doctor. You can request to be matched by illness/disability, specialty, grade or country in any combination. The scheme is entirely web-based (web.bma.org.uk/public/chill.nsf). When a doctor who meets your requirements applies, you will each be sent the other’s email address. The rest is up to you. The scheme relies on your patience and goodwill: goodwill because the scheme also relies on doctors with or without chronic illness to be prepared to give career advice to other doctors, based on their own knowledge and experience, and patience because I do all the matching work manually. I first realised something was not right when I was a junior doctor working in a general medical ward. My hands were so black that I could hardly use them, but being a typical doctor I ignored it and carried on working. After a while, the consultant I was working with insisted that I get myself checked out. And I was soon labelled by the rheumatologists, who did not mince their words when they told me what was ahead. I chose not to pay heed to them. It wasn’t that I didn’t believe them, but they were quoting statistics and didn’t know me as an individual, with a marathon runner’s endurance. Long distance running was the love of my life and had instilled in me the mentality of “What’s this? — Pain — Carry on”, so I was determined to continue with my original career plan: paediatrics. But it soon became clear that working with neonates when you have black, clumsy hands is not feasible. Undeterred, I decided to become a general practitioner, and embarked on a 3-year GP vocational training course. After completing this course, I had a brief spell in psychiatry (because I thought it would be better for me health-wise), but decided after 6 months that it definitely wasn’t for me. I then worked as a GP in Glasgow for 2 years. However, by this stage, weird musculoskeletal symptoms made driving very difficult, so I gave up general practice and started training in public health, again thinking that this would be easier health-wise. But it wasn’t, and I really missed contact with patients. After a lot of heart searching, I gave it up and started training in tropical medicine, after being accepted by a charity to work in a developing country. I had worked in Bangladesh and Romania as a junior doctor and medical student, and had promised that I would go back one day. Unfortunately, I took a turn for the worse — one of my fingers became gangrenous and had to be amputated. The charity then said they didn’t want me, and I was left with nothing. No career, no job, no place to live and no money. Nevertheless, I still had my determination and my pride. I was considering retraining as a counsellor when I saw an advertisement for the post of editorial registrar with the BMJ. It was as if the advert had neon lights round it saying: “This is the one, Rhona”. To my absolute amazement, I got the job. This was even more surprising as I was in hospital when they emailed me about the interview, so I didn’t know until 24 hours before it, when my dad (who had checked my emails) phoned me in a panic. My consultant let me out for the day, I bought a suit from a charity shop (as all I had was my pyjamas), wrote the 800-word editorial they requested, unhooked myself from my treatment, and jumped on a train to London with nothing to lose. I have now been in this job for more than 2 years and feel so privileged. I see this job as such a bonus and want to do as much as I can to help other doctors. That’s why the chronic illness matching scheme (Box) is so important to me. Throughout my medical career, I have faced prejudice, pity and, worse still, the “doing well, despite health” reports. The most painful incident was when I had been off work for 4 weeks receiving treatment. As the human resources department did not organise locum cover for my absence, my colleagues had to do extra work. When I came back, they marched me into a room and said they didn’t want to work with me any more. This can still bring tears to my eyes when I think about it. So the matching scheme is my way of doing something, however small, which might help other doctors who may be in a similar situation one day. It would be better if we could stamp out all discrimination, but this is a first step. My future is uncertain. A few months ago my remaining left fingers were amputated, and a bowel operation and more finger amputations are on the cards. However, I believe I will be fine if I stick to my motto: “Accept and adapt and never give up”. I just hope that other people can also do this for me.

Rhona MacDonald MRCGP, MPH

Carers cannot care without backup, nor be everything from nurse and banker to best friend Six years ago my daughter Isabella, now aged 31, was diagnosed with schizophrenia after a prolonged period of bizarre behaviour. She had many difficulties during her childhood. She was never able to relate to her peer group, to play with them or to be included in their activities. She depended on her parents and other adults for mental stimulus. An embarrassing obsession with another student led to the first of several changes of school. She received a great deal of psychotherapy from psychiatrists. Professor Allan Fels, his wife Isabel Cid de Fels, and their daughters Isabella (left) and Teresa (right). Photo courtesy Vicki Jones Photography, VIC. Isabella now lives at home, receives treatment from a psychiatrist, and takes medication which generally relieves her psychotic symptoms. Isabella is a loveable, charming, sensitive, articulate and intelligent young woman, but even with medication her illness can cause serious difficulty in comprehending reality, frequent obsessional behaviour, sometimes socially inappropriate behaviour, lack of motivation and bouts of irritability. Like others with schizophrenia, she may need help in making “reality checks” — distorted and confused perceptions may be kept in check by talking to people with a better grasp of what is happening. Families, friends, volunteer helpers and professionals may be of great help here. One effect of deinstitutionalising those with mental illness since the 1980s has been the greater burden on families. An attempt by Isabella to live away from home with others, in a house with mental health workers present from 9 am to 5 pm on weekdays, did not work. She has underdeveloped living skills, and her illness is such that she could not live by herself — she basically depends upon family care. The challenge for the family is well summed up by E Fuller Torrey in Surviving schizophrenia: “Family members, especially mothers, are often asked to simultaneously be the person’s case manager, psychotherapist, nurse, landlord, banker, janitor, cook, disciplinarian and best friend”.1 Families cannot be all these things, and especially they cannot be psychiatric hospitals. The physical and emotional impact on the family is very great, mostly all consuming, especially for my wife. Without intellectual stimulus and some pressure to engage in activity, Isabella lapses into prolonged inactivity, passiveness and depression. She needs company to relieve her of anxiety about changing obsessions. Occasional respite care provides some relief, but is underresourced, like many other services. Consequently, a significant number of people who are seriously affected by the illness may not cope at all, and leave home, sometimes turning to drugs, alcohol and even to prostitution and crime. Families that try to care need substantial backups, but these are often lacking. While it was recognised that deinstitutionalisation could work only with adequate social support, the quality and range of the necessary community-based psychosocial services were seriously underestimated. Isabella has been unable to receive adequate attention from services and, like many others, has suffered from a lack of rehabilitation and recovery programs. More programs of organised recreation and activity are needed (in Isabella’s case these would include, besides occupational therapy, activities such as reading together, writing together, general education on current affairs and general knowledge), as well as vocational training, counselling, help with developing living skills, structuring the day, managing diet and physical exercise, and in obtaining part-time work. A greater range of services is also needed to manage crises which occur in the course of the illness — yet even in hospital services are limited. Some support for families does exist through social and mental health workers. Our experience has been mixed. In some instances, we experienced problems that seemed to stem partly from a failure to adequately include the family — the long-term primary carers with the best understanding of the person and their illness — in management. At other times, we experienced demeaning and dispassionate attitudes from some mental health workers. We encountered some social workers with an attachment to inappropriate or ill judged notions of independence and personal freedom for the person with schizophrenia. This has sometimes been based on a superficial understanding of that person’s circumstances, reinforced by short-term involvement caused by high rates of staff turnover. A consequence in our case has been a tendency to try to lead our daughter in a quite different direction from the one we believe she should follow. For example, she was encouraged, without consultation with us, to leave home (which she did for a time) without any understanding of the likely problems. Similarly, she was encouraged to enter personal relationships which we knew would cause her distress after a short time. There is growing evidence that early treatment may assist in alleviating the illness, and, in view of this, it would be useful if general practitioners could ensure its early diagnosis. However, inadequate attention is often paid to the early signs and symptoms, and to the concerns of relatives, which leaves families feeling let down. Yet, there are already many other demands on our hard-pressed GPs. It will require higher prioritisation of schizophrenia by the public, by governments and by the medical profession if the illness is to secure more attention. An even harder ask is that school teachers and counsellors watch for early signs of schizophrenia. Often, they are the first to notice that something is seriously amiss, but are not trained to recognise what it is. While satisfied with Isabella’s current psychiatric care, we are disappointed that previous specialists resisted our suggestions that Isabella might have schizophrenia (given a family history of the illness) and that continuous psychotherapy from age 13 to 25 years was unproductive. It would be interesting to gather hard evidence on the outcomes of such therapy. Schizophrenia has been stigmatised in society, a situation which we should all try to overcome. This is why we agreed to airing the issue on ABC TV’s Australian story (www.abc.net.au/austory/transcripts/s659714.htm). Occasionally, the term schizophrenia is avoided and replaced with euphemisms such as “developmental arrest mental illness”. I do not agree; the condition should not be disguised, and the stigma associated with it should be addressed directly. It should be named in the same way that we name diabetes or asthma. Schizophrenia does not seem to receive the priority it needs from our public health system. Australia spends less of its health budget on this illness, proportionally, than other countries, according to a recent study by the economic consulting firm, Access Economics.2 This is partly historical, partly because of its low priority politically, and partly because of a failure to recognise the large social payoffs from preventing the drug-related illnesses and crime for those at the serious end of the spectrum. As an illness which extends over an entire lifetime, it has enormous personal, family, social and economic ramifications.

Allan Fels AO

Abdullah Demirkol,* Jan Ritchie,† Pippa Craig,‡ on behalf of nine co-researching patients * PhD Candidate, † Associate Professor in Public Health, ‡ Conjoint Lecturer, School of Public Health and Community Medicine, University of New South Wales, Sydney, NSW 2051 j.ritchieATunsw.edu.au To the Editor: Oldroyd et al provide some revealing views of general practitioners on the many difficulties and few rewards arising from their care of chronic disease patients.1 As co-researchers in a participatory action research inquiry, exploring how nine of us living with Type 2 diabetes can better manage our condition, we read the article with interest and wish to give our perspective, as patients, on the issues addressed. Oldroyd et al report that many GPs describe chronic disease management as a “burden”. We are only too aware of this negative response when we present with our chronic conditions. GPs are usually our first, and often only, regular contact with the healthcare system. Although we would like to rely heavily on them, we rarely find they have enough time for us. The standard consultation is barely long enough for renewal of our prescriptions. Yet, for a couple of us who have recently wanted extended assistance, the situation has been exacerbated when our GPs have resisted specialist referral, on the assumption that their care is sufficient. The article reports the conflict felt by many GPs concerning implementation of clinical management guidelines, many of which they felt were not feasible in their everyday practice. Again, we share the discomfort this brings when we are informed of the guidelines, yet know that they do not fit with our own personal situation. We would dearly love more collaboration and negotiation in developing workable solutions best suited to our own unique circumstances. As one of us states, “none of those clinical, scientific studies can possibly be as long, complex and complicated as real life”. We believe we have accumulated a considerable amount of experience and knowledge about living with diabetes, and feel disappointed that our experience is not considered of value. It is apparent that we share the same goals as GPs in seeking effective chronic disease management, but the different knowledge bases and perspectives of doctors and patients have not coalesced. Involvement in this current participatory inquiry has given us the confidence to speak out and to propose that, as patients, we should become legitimate members of the treatment team. We await an invitation to be part of the process in implementing initiatives.

Abdullah Demirkol · Jan Ritchie · Pippa Craig

While it is not strictly correct to link the aged with those who are chronically ill in any discussion on the provision of a health service for the community, they may be grouped together because of the fact that special provision has to be made for them. The rising cost of the upkeep of hospital beds is one of the factors which make discussion necessary. At a recent meeting of one of the Branches of the British Medical Association in Australia it was stated...that the cost of upkeep of a bed in the teaching hospital...had risen to £14 14s. a week. This is fantastic,... Quite naturally one asks for how long the cost of hospital treatment is likely to increase and what will happen in the future. To use hospital beds at two guineas a day for persons suffering from chronic illness or for those who are helpless because of senile changes is not common sense. When these people have to be admitted to hospital special institutions are needed for them - what they want is nursing attention rather than any of the elaborate equipment used for diagnosis and treatment in the large teaching hospital. This is well known to all who have anything to do with hospital management; but, like so many other features of the present social order, it needs to be drummed into those not intimately acquainted with hospitals who are in a position to correct anomalies or to create public opinion about them. ...we should realise that prevention of chronic illness is no less important in the community than prevention of the acute variety. Let us look first of all at the "chronics", as the chronically ill are commonly dubbed. They are a large, and in many respects a pathetic, body of people. We plead for special institutions...where they may be nursed and treated. And it is right that we should do this, especially when we find that they tend to occupy beds in which acutely ill persons should be placed. But such an attitude accepts the position as it exists and does nothing to make the problem less acute for the future. Prevention should be the note — and we should realise that prevention of chronic illness is no less important in the community than prevention of the acute variety. If we could prevent chronic illness, we should be able to cease our clamour for "chronic hospitals", we should be able to stem the ever-increasing expenditure on invalid pensions and we should have the satisfaction of knowing that many of our fellow citizens were able to enjoy life and make something of it. The most important of the chronic diseases have been named as heart disease, arteriosclerosis, arterial hypertension, nervous and mental disease, arthritis, kidney disease, tuberculosis, cancer, diabetes and asthma. It must be admitted that we are grossly ignorant of the causes of many of those conditions, but we must also confess that if everything was done that could be done, if all our knowledge was correctly applied, much suffering could be avoided... In the prevention of some of the diseases named...the practising members of the medical profession are largely dependent on the steps taken by governments to make provision for sufferers and their dependants. But there is ample scope for the practitioner to exercise a personal influence and even supervision in many matters... The treatment of a chronically ill person should be carried out with the same assiduity as is displayed towards the acutely ill, and the object must be to restore the patient so that he will be an independent and self-supporting member of the community. If his illness has progressed to such a stage that he is permanently incapacitated, every effort should be made to preserve his morale and even to increase it so that mental factors will not be added to a physical disability... In this short discussion [we have drawn] attention to the problems of the chronically ill and the aged in the light of the constantly increasing costs of hospital management. These problems have their individual peculiarities and difficulties, but it is clear that each can be mitigated by the introduction and continuous use of preventive measures. Results will not be obtained at once, for prevention here, as nearly always, must be a long-range policy. Med J Aust 1950; 1: 601-602 [editorial]

Too tired for anything Fatigue is the most prevalent symptom reported by patients with cancer and can be experienced before, during and even years after treatment ends. However, we still have much to learn about its causation, assessment and management, say Swedish and US authors. In a literature review, they identified effective interventions which include treating anaemia, exercise, and psychological methods (eg, support groups, individual psychotherapy and stress management). Energy conservation and sleep are under further investigation, as are pharmacological therapies, such as erythropoietin. image.thelancet.com/extras/02art6023web.pdf You must remember this . . . Eating fish at least once a week may reduce the risk of developing Alzheimer's disease (AD), according to US researchers. They studied dietary intake in 815 elderly residents in a Chicago community, 131 of whom developed AD during a mean follow-up period of 3.9 years. Taking age and other risk factors into account, study participants who consumed fish once (or more) a week had a 60% lower risk of developing AD than those who rarely, or never, ate fish. Fish is a direct dietary source of preformed docosahexaenoic acid -- this omega-3 polyunsaturated fatty acid is a major component of brain membrane phospholipids. Arch Neurol 2003; 60: 940-946 Let's lighten the load Tackling major known risk factors simultaneously, instead of one by one, has the potential to substantially reduce the global burden of disease, says an international research team. They estimated that 39% of the global burden of disease and injury in 2000 could be attributed to the joint effects of 20 selected risk factors, which included poor diet, physical inactivity and use of addictive substances. In developed regions, non-communicable diseases -- such as ischaemic heart disease, stroke, chronic obstructive pulmonary disease and alcohol use disorders -- and their risk factors dominated the burden of disease. Lancet 2003; 362: 271-280 Difficult beginnings While about one in 20 children will have a longstanding health problem at 8 months of age, this will increase to about one in 10 children when they are 3 years of age, according to UK research. A cohort study of more than 1 000 infants also found that, as the children aged, congenital problems accounted for a decreasing percentage of problems, and developmental delay and asthma became more prevalent. Children with longstanding health problems were at greater risk of impaired general and functional health and of poorer health-related life quality. By 3 years of age, the risk of a longstanding health problem was linked to living in a smoking household and in rented accommodation. Arch Dis Child 2003; 88: 570-573 Out of control? UK researchers have expressed concern at the generally poor glycaemic control -- a mean HbA1c of 9.5% -- found in their study of nearly 400 young people aged 16 to 25 years with type 1 diabetes.1 The researchers suggested that young adults in the UK may have difficulty complying with traditional clinic systems. Another team of UK researchers has proposed a possible solution to the problem by suggesting that motivational interviewing may help adolescents improve their glycaemic control.2 Their pilot study involved 22 patients aged 14 to 18 years. After a 6-month intervention involving non-confrontational sessions, the mean HbA1c level of participants had decreased from 10.8% to 9.7%, and their fear of hypoglycaemia was reduced. Patients also perceived that diabetes was now easier to live with. 1. BMJ 2003; 327: 260-261 2. Arch Dis Child 2003; 88: 680-683 Autism aware More evidence that a link between the measles, mumps and rubella (MMR) vaccine and autism is unlikely: a UK cohort study of 567 children with autistic spectrum disorder (ASD) living in north-east London has found that the prevalence of the disorder plateaued after reaching a peak in 1992.1 The study suggests that the rise in prevalence of ASD seen throughout the 1980s and early 1990s was not due to the MMR vaccine (which was introduced in 1988), but rather the increased recognition of and better recording of symptoms for ASD. Across the Atlantic, a US Center for Autism Research studied changes in head circumference in 48 young children with ASD, reporting that an excessive increase in head size early in life may be an early warning sign of risk of autism.2 1. Arch Dis Child 2003; 88: 666-670 2. JAMA 2003; 290: 337-344