NYAPRS Note: The following comes to us courtesy of Peggy Swarbrick.
In It Together: Physical Health and Well-Being for People with Mental Illness
By Sharon Lawn Australia and New Zealand Journal of Psychiatry 2012 46: 14
Department of Psychiatry, Flinders University, Adelaide, Australia (Flinders Human Behaviour and Health Research Unit, The Margaret Tobin Centre (Room 4T306), Flinders University PO Box 2100, Adelaide SA 5001, Australia Email: sharon.lawn@flinders.edu.au).
In mental health and physical health care settings, we have largely ignored mentally ill peoples’ physical health problems, arguing that they have other priorities, that they won’t be motivated, that someone else is responsible, or that the situation is hopeless anyway. As workers, we can spend lifetimes telling people what they should be doing and then wonder why they don’t follow our good advice. We sometimes don’t even expect to wonder; which is part of the problem.
Why is physical health important for people with mental illness? The statistics are stark. We know that almost half of all cigarettes smoked in Australia, the US and the UK are smoked by people with mental illness (Access Economics, 2007; Lasser et al., 2000; McManus et al., 2010). Those with more severe mental illness die on average 25 years sooner than they should (Manderscheid et al., 2008). We also know that they have two to three times the mortality and morbidity from all the major chronic health conditions (Coghlan et al., 2001). For example, cardiovascular disease is their leading cause of death for people with mental illness (Kilbourne et al., 2007; Osborne et al., 2007). Diabetes in the third leading cause of death for people with schizophrenia, after suicide and epilepsy (Chue and Cheung, 2006).
It has become so insidious in this group that some experts suggest it be officially recognised as an independent risk factor for diabetes in its own right (Dursun et al., 2005). Cancer rates occur similarly across the whole population. However, mortality rates are significantly higher in people with mental illness (40% higher in males and 20% higher in females), most likely due to insufficient early detection, treatment and care; too little, too late (Lawrence et al., 2000). Metabolic syndrome has reached epidemic proportions, and is expected rather than the exception for people with long-term mental illness (De Hert et al., 2009). And finally, people with schizophrenia have a 10-fold increased death rate from respiratory disease, with smoking as the main cause (Joukamaa et al., 2001). What makes these statistics even more concerning is that many people with mental illness have more than one of these health problems. We already know a lot about the problem. We have spent a lot of time measuring it. It is time for action.
So, why don’t people just do what they are told and what they know is good for them? The simple answer is that most of us are not very good at doing this (Vermeire et al., 2001). There are likely to be particular reasons why many people with mental illness struggle with their physical health. We know that they can live very sedentary lives. They are particularly likely to smoke and to eat fewer serves of fruit and vegetables than is recommended for good health.
Add to this the side effects of psychiatric medications, and problems with memory, planning, motivation and initiating tasks, in addition to stigma (Lambert and Newcomer, 2009; Muir-Cochrane, 2006), and it becomes obvious that maintaining good physical health, let alone good mental health, is hard work. If you are sleeping 14 or 16 hours a day, every day, because of sedation from medications or because there is little to get up for, of course there will be negative consequences for health. If you are too paranoid or anxious to get on a bus or go to a major supermarket to buy groceries and you’re living on takeaways at the local deli, of course your diet is going to be poor. This is not true for everyone but is clearly so for some people, particularly many people with lower prevalence psychiatric disorders. Many people with mental illness are running a marathon every day, just in their minds, let alone what we expect them to do to be fit and well. It is hard work. It can be exhausting.
To make the journey even more difficult, there are many barriers to people with mental illness receiving adequate care for their physical health at every point in our health system. We have highly fragmented systems of care; we don’t talk to each other very well, we palm off responsibility to each other, or we ‘forget’ about the whole picture of the person’s journey when they leave our office (Lawn et al., 2009).
And many people with mental illness have had bad experiences in mental and physical healthcare systems, so of course they’re going to be tentative about seeking help. This is obvious, yet we continue in our failure to recognise this. When people lapse in medication use, they are labelled non-compliant. When they forget their medication and then, 2 or 3 days down the track, they are becoming unwell and have crossed that line already, they weren’t non-compliant—they just had a problem with not having anyone there to help.
Is it any wonder then, when we have systems that think one way, but which are disconnected with the person’s needs, that people with mental illness have difficulty with their physical health? In such systems, everyone just does what they can and the problems continue unabated. Workers may blame the person with mental illness, saying he or she wasn’t motivated. Workers variously opt out, blame others, or abrogate responsibility and accountability to others. A defeatist view prevails. Everyone pays, but particularly people with mental illness. If we waited for people to be ‘ready’ for change, then many clients of mental health services would not get any service. We have to find ways to help people now. People with mental illness are very concerned about their physical health. Many people may feel they just can’t succeed or are scared of becoming unwell (Siru et al., 2009). Change is scary.
Another obvious issue for those of us who live with someone with schizophrenia is that the best laid plans for ‘change’ or ‘motivation’ or ‘action’ can be like shifting sand (Lawn et al., 2010). Each day is a different country, and next week can feel like a world away. It is not a case of, ‘I am motivated and I will stay motivated for the next 3 weeks or 6 months’. Yet, we expect people to follow our textbook version of diet and exercise regimes, and we usually expect them to do it alone!
Health policy, physical health care and the behaviour change goals implicit within them have become increasingly an industry. At the heart of these processes is health literacy and assumptions about how it will improve engagement by the person in his or her own health care (Nutbeam, 2000). Looking closely, the assumption is that the person needs to know more, that he or she has problems engaging with services, and greater health literacy on his or her part will solve these problems, that it is a ‘critical empowerment strategy’. This all sounds worthwhile and of course knowing as much as you can about your health conditions and how to manage them so that you can prevent further complications, react and respond for best effect, learn to tailor actions and solve new problems as they arise is clearly important (Lorig, 1993). This is so long as systems of care and the broader social circumstances in which people live their lives are also addressed so that we do not create barriers for them like the ones mentioned already.
We build services and structures and expect people to turn up and follow our rules and criteria, often without thinking how we can fit with their needs. So, when a person in his forties with schizophrenia goes to the emergency department (ED) because he is experiencing chest pains and knows that something is wrong with his heart, and the ED staff ask him, ‘How is your schizophrenia?’, and he sits there for several hours but never sees any specialist except a psychiatric registrar, and he is discharged only to drop dead on his lawn the next day—did he have a problem with engagement or health literacy? No, he didn’t. What he had a problem with was the service engaging with him and asking him about his physical health. Services also need to change. People do engage if conditions are created for them to do so. You see, people are more than a string of symptoms to be managed with medications, information and behavioural adjustments. They have complex life histories that impact on their health behaviour in spite of knowing what is ‘good for them’. Within the service provider-driven interpretation of health care, denial, non-compliance and lack of insight are deemed as problems to be assertively addressed with education and treatment. Maybe many people with mental illness are just doing what they can to take back some control within a process that may be perceived to be out of control or controlling.
Our beliefs, thoughts, and how we feel about ourselves also affect how we see ourselves and take action to look after our health (Bandura, 1977). One pertinent example of this complexity is the issue of smoking and mental illness. It typifies the multitude of absurdities that we have built up over decades about how, within systems of care, we fundamentally treat people with mental illness (Lawn, 2004, 2008). In the absence of effective support, people do what they can, as the following two comments demonstrate:
(Mark – schizophrenia)
The first time when I had no money and I couldn’t get credit at the deli, I used to go around the streets looking for butts … looking for butts … I don’t know where or who they came from but I’d unroll them and join them all up again into one. (pause) It was just a smoke wasn’t it? When you can’t have a smoke you just go around knocking on people’s doors asking for smokes … and they’d say, ‘Who are you and what do you want?’ Some just used to swear at me and push the door in my face, bang the door. It was just a smoke. (pause) I would have done anything for one at the time.
(Joan – bipolar)
When I’m more agitated it’s like I can’t do things but I also can’t not do anything. Having a cigarette fits right in that gap.
If we are to address physical health for people with mental illness, we need to first believe that it is worthwhile, that it is possible, and also that it is a priority alongside effective treatment for mental illness, not secondary to it. The following statement was made over a decade ago by a psychiatrist with influence (Lawn, 2004):
Poor devils, they haven’t got much left for them with schizophrenia. If they want to smoke, let them.
I showed this quote to a large group of psychiatrists in 2010 and the majority of them were appalled by it. However, one psychiatrist asked me what was wrong with it. So I asked him if he would say something like this to his patients, to which he quickly said ‘No, of course not’. So I asked him why he wouldn’t say this to his patients, to which he gave no response.
A related argument that is often applied to people with mental illness is that smoking is ‘one of their few pleasures’ or ‘their only pleasure’. This is another example of giving up hope and the biggest tragedy is when people with mental illness use this argument themselves. One recent example comes from a small group of consumers backed by a social action lobby group who wrote a submission to NSW Health protesting about its smoke-free policies. Their main argument was that smoking was their only pleasure. But, why is smoking their only pleasure, and how the hell did it get this bad that it is perceived as their only pleasure? Surely, it is bad enough that we have systems of care that implicitly hold this view (and sometimes explicitly). Is this good enough and what are we all going to do about it? Answering these questions would seem to be getting closer to a better sense of social justice and support for health and well-being for people with mental illness.
So why do we need to find more effective ways to address physical health for people with mental illness? Because these are our family members, neighbours and friends and we’re in this together. There is ‘no health without mental health’ but there is also ‘no mental health without physical health’ (Tiihonen, 2011). We are all affected, either directly because they are our family or indirectly because, as workers, we lose skills, or never develop them in the first place when we ignore these issues. Yet, many workers will tell you the best memories of their working lives are the times that they have truly been ‘in it together’ with their clients, learning together through a real human exchange. It is often the skill development and the impact that doesn’t get measured.
Two examples of services using peer workers demonstrate how it is possible to step out of our service comfort zone to learn together. The first was a hospital avoidance / early discharge peer-led support service in Adelaide. Peers were getting in the door and working with people when other workers were not. The person listened to the peers and trusted them because peers understood the barriers to mental and physical health first hand. They helped people find strategies for becoming and staying well (Lawn et al., 2007a).
The second example is a study that tested a model of chronic condition self-management support with people with mental illness (Lawn et al., 2007b). Again, peers showed how the simple act of working alongside people can make all the difference. People were motivated to look after their physical health; they just needed relevant support to do so. Consumer-identified problems lessened, they achieved their goals, their quality of life improved and their hospital admissions disappeared. Workers found out things about their clients and understood them better simply by asking people what they knew already about their health conditions, what they did well, what they found difficult, what they saw as ‘the problem’. Peers reported improved health and well-being too, and GPs became more confident and skilled in their roles.
In conclusion, how we take the steps with people is the most important thing. There are important system improvements that we can make to create a real difference and we now have the potential with more funding in the sector to do this. Services like the team at the Mental Illness Fellowship of Victoria, are demonstrating the strong leadership and commitment that are needed if we are to address the physical health of people with mental illness. But they cannot do it alone. They need other services, particularly mental health services, to respect what they do and to work with them, together with the person. Workers across systems need to believe that they can make a difference. They need to care. They need support, training and practical tools that help them to work with their clients and each other, together. This requires resources to build more effective communication systems, and that give services the necessary time to support people adequately—not in the short term, but also along the journey—in order to make a real impact across the whole spectrum of physical and mental health support experiences for people with mental illness. For people with mental illness to feel safe, valued, respected, listened to, and not judged, services need to work together with them and with each other. We are, after all, in it together.
Funding
I wish to acknowledge and thank Frank and Patricia Woodcock for their generous sponsorship of the Annual Bruce Woodcock Memorial Lecture.
Acknowledgements
I wish to thank Elizabeth Crowther (CEO) and all the wonderful staff at the Mental Illness Fellowship Victoria. I also wish to thank Michael Nanai for permission to use his artwork. The full lecture can be heard on the Mental Illness Fellowship of Victoria website at: http://www.mifellowship.org/? q=content/physical-health-wellbeing.
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