Tuesday, March 6, 2012




Let me comment briefly on the role of public discussion in advancing good health. Thailand has made huge use of what they call the National Health Assembly, in which there are open discussions on what problems the public faces in health care and in related fields and also on how they can be removed. This has gone with the progress made in Thailand in introducing universal public health care, and it has been nicely supplemented by feedback from the people, with considerable gain in efficiency and reach

-       Amartya Sen Learning from others The Lancet 2011:377; 200-201

First, put the patient at the center – at the absolute center of your system of care. Put the patient at the center for everything that you do. In its most helpful and authentic form, this rule is bold; it is subversive. It feels very risky to both professionals and managers, especially at first. It is not focus groups or surveys or token representation. It is the active presence of patients, families, and communities in the design, management, assessment, and improvement of care, itself. It means customizing care literally to the level of the individual. It means asking, “How would you like this done?” It means equipping every patient for self-care as much as each wants. It means total transparency – broad daylight. It means that patients have their own medical records, and that restricted visiting hours are eliminated. It means, “Nothing about me without me.” It means that we who offer health care stop acting like hosts to patients and families, and start acting like guests in their lives. For professionals made anxious by this extreme image, let me simply remind you how you probably begin every encounter when you are following your best instincts; you ask, “How can I help you?” and then you fall silent and you listen.

                           -     Don Berwick Top Ten Tips for the NHS

Today I acknowledge the traditional custodians of this land and their wisdom and pay respect to their elders, past and present.

I wish to talk about and with consumers, people who use the health system, and their carers.  The community at large is not my concern today and they have an important part to play in shaping and supporting health services.  But consumers – you – are the troops in the trenches. Hello!

My day job – when I am not chairing the Western Sydney Health District board – is to direct the Menzies Centre for Health Policy at Sydney University.  I do this because I hold strongly to the view that academics have a contribution to make to the development and assessment of the effects of health policy.  You as consumers have a similar view about the contribution that consumers can make to health policy and health care.  We are both right.

A few of our splendid students who study with us in our Masters of Health Policy course come with the idea that evidence derived from science, especially medical and public health science, should be the base on which all health policy is built.  So if a clinical trial shows that something is better done this way rather than that, surely we should follow the best path.  Often it does. 

But policy is more complicated and there are different kinds of evidence that must be put on the table, like different vegetables in a meal, if policy is to have a chance of working.  The evidence of the experience of consumers can be as important as evidence from randomized trials when creating policy.  Clever policy makers know that and seek out consumer views. 

In our work at Menzies over the past five years we have spent a lot of time speaking to people with chronic illnesses, getting their perspective on what they consider to be important in their care.  Without conversations like these the economic hardships borne by people with chronic problems and their carers would be less obvious.  We would know far less about what it is like as a sufferer with several long-term problems struggling to sort out the meaning of new symptoms that arise and to assess what should be done, or muddling with their meds.  We would know much less about the principles needed to coordinate the various arms of care in serving the needs of these people. 

At times what consumers need and what health professionals think they need can be in conflict.  I participated in a focus group four years ago for patients with end-stage respiratory failure and their family carers to discuss end-of-life matters.  It was frank, open and deeply moving.  One man simply wanted to know how he would die.  Another wanted assurance that advanced directives would be followed. 

Several spoke of horrific experiences where their advanced orders were not followed, and they lived with the consequences.  But when we discussed the results of the focus group with the doctors, we were met with a degree of dismissive bluster that may have been due to their personal discomfort with death and dying.  We have a distance to travel.

There are three distinctive contributions that consumers can make to the formulation of health policy and to health practice.  First, they can modulate the formation or reformulation of health policy to take account of the lived experience of those who are on the receiving end of care. 

Second, they can remind health professionals and the health bureaucracy about the important values that has led society to invest to heavily in health care. 

Third, they can propose alternative ways of handling problems that may differ in style and substance to those coming from health professionals and others that may be better than what we have at present.  There is little comfort to be derived from our efforts in Indigenous health, but where success has occurred it has usually been built on effective partnerships with the people who live and breathe Indigenous consumers.  

To recap, consumers can provide a reality check, they can remind us what matters, and they can suggest new models of care.  Let’s look at each of these.

First, then, how consumers can help us modulate health policy.  For five years we have been working in western Sydney and the ACT meeting patients with chronic problems such as heart and lung disease and complex diabetes, speaking with them and their carers about their lives, how they cope with their illnesses, the challenges, where our existing policies work well and where they don’t. We have learned much that you won’t find in policy statements. At one conference where we were asked to present some of our findings we invited four of the patients to come and address the gathering.  It added a dimension to discussion about chronic illness to have people with oxygen bottles and wheelchairs doing the talking. 

One woman with severe lung disease had had to get up at about 4:30 am to be in the city by 9 am, because she took so long to get dressed.  Getting to the conference and back was a major production.  While one railway station near her had a lift to an in-bound line, it did not serve the outbound line and on the way home she would need to go to a different station to the one from where she left.  Just the business of walking from the entrance to the hotel to the meeting room took an age with lots of stops. She knew a great deal about her illness and the health system that people like me, in the system, did not know.

Recently my colleagues Stephen Jan and Beverley Essue and I wrote a paper for the Medical Journal of Australia examining the economic costs of chronic illness not on the health system but on the people with the problems and their carers. The results I suppose were hardly surprising.  But what we learned was that families with one member with a chronic illness often found themselves in financial bother due to out-of-pocket expenses for home modification, special transport, co-payments for pharmaceuticals if they were not supported by social security, loss of earning if the patient could no longer work or the carer could no longer work or the patient could no longer work at what they were doing.  And the loss of work is not only the loss of a wage. I recall vividly the tears of one man with chronic lung problems who told me that while he could continue to stack shelves slowly with light goods he could no longer lift the heavy stuff or work fast.  Socially and economically that was unsustainable. He had to leave.  Another said to me “I used to be a truckie but I can’t do that any longer so what am I going to do?”

And then there’s the social cost. People who loved the club or church or playing bingo can no longer do it. Is this something our social and health policies should take into account?  Obviously macro policies can’t cater for every individual’s needs but I wonder if we might not, if we wished, do better. You can buy an awful lot of community support for the price of one day in the ICU.

While not directly related to the business of being a consumer, social policies that support voluntarism may be worth thinking more about as well because there is an amazing amount of volunteer help that people with chronic illness receive in the community.  In fact one of the summary realizations that has come to me as a result of our five-year study is that the vast - 90% - of care for people with chronic problems occurs entirely outside the formal care system. Supporting those who support the people with the problem is something we could do better.  Consumers know about these things and attending to what they are telling us would move policy in socially constructive direction.

Recently in western Sydney and because I chair a committee that looks at the ethics of proposed research there that has on it lay people, clergypersons and lawyers, some of whom do volunteer work in the wards as well, I asked our administration to provide our board with information about the various groups of volunteers that work with our public hospitals out there.  I kid you not – the list of groups, not individuals, groups – came to over four pages!  I was astonished.  Groups supporting people with specific illnesses, groups bringing around books and magazines and good cheer to people in the wards, groups visiting people with no visitors. Many of the volunteers were also consumers themselves.  What do consumers and the communities know about health care? Lots!  Ask the volunteers.

And voluntarism is not limited to those who do not work in the health service.  Following the dreadful nursing home fire in western Sydney last year, off-duty nursing and other staff from Balcktown Hospital called up to see if they could come and help out at that overburdened hospital. How good is that!

I have to break here to tell you my favorite story about social support for people with chronic illness. I always asked my patients with severe chronic health problems, “What gives your life meaning?” One man I met at Blacktown who had severe lung problems told me that he loved dancing. But with his difficulty breathing this was now almost out of range.  He asked him what he did about it.  “Well,” he told me, “Because I am not sick enough to have home oxygen this is what I do.  My mate next door does have oxygen so late each Wednesday afternoon I go to his place and I suck and I suck on his oxy and then I go dancing till I drop and sleep it off the next day!” 

What do consumers know about health care?  Lots, including the limitations of respite care. We were surprised initially by the extent to which carers did not make use of respite care, but it stands to reason when you learn about the devotion of carers and the excellent, sacrificial service they give to those for whom they care.  No one can do it better than we can, they argue – and they are probably right.  If respite care is to fulfill a real service, then we need policy development that will take account of carers’ concerns and provide support better than it does at present.

Many of you will be involved in consumer panels and consumer groups that serve to bring to the attention of health social agencies the needs of patients and those caring for them that would otherwise be invisible. Francis Fukuyama, a mercurial historian in the US, has recently argued strongly that the needs of contemporary society are not so much driven by the working class, which in many places including Australia has shrunk dramatically as prosperity has increased and expanded the middle class, but the marginalized minorities that include those with disabilities and long term illness. 

I chair the board of a non-government agency, Progressive Employment Personnel that operates in Hornsby and the central coast seeking to find employment for people with mental illness.  Often it has first to find adequate treatment for such individuals, especially teenagers. But I can tell you they are marginalized.  A marginalized group, in our society, I define as a group that has to wait at least 90 minutes on the phone with Centrelink to get even a simple answer – if such a thing exists in Centrelink.  I am sure people who work in that agency include many of goodwill but its grudging aura, its inordinate delays and its capacity for constructing frankly stupid policies is in my judgement, and for no further discussion today thank you, scandalous.

But minorities have weak voices, or no voices, and they are the underclass in today’s Australia. They continue to include many of our Indigenous brothers and sisters, those with mental illnesses, the old and the chronically ill.  There are marginalized ethnic groups as well and the squalid politics of the way our government mismanages refuges – my detention camp for boat people is bigger and more miserable than your detention camp – reminds me of the comparisons I used to witness when I was a high school student as we boys entered and passed through puberty, and experience that I did not manage well I might add. I was a late developer.

So if there is one place where the consumer voice is needed as an advocate it is in regard to the marginalized in our society.  True, us mainstreamers all need advocates – as I tell my friends, based on my personal experiences in hospitals private and public for relatively minor problems – everyone in hospital needs an advocate.  But.  Beyond, over and above, and how much more, do those living on the fringe of our society need advocates, to put their case, to be their voice, in the conversations that determine the policies that guide what we do in health and what we do in social security.

To finish, let me turn the dial a little in the direction of optimism and hope.  I visited India again recently, a country growing at 6% per annum and making great strides.  You can see just by watching the progress over years how prosperity is spreading, how people are being retrieved from the darkness of poverty and issued into the light of economic well-being and all that goes with it. Polio has gone!  Can you believe it?  Polio has gone from India!  But there remain 200 m people who remain trapped in poverty. To be a consumer there means nothing, NOTHING.  You have no voice, you hardly even exist. 

In this wonderful country of ours we should probably tape to the cup we use for the first coffee of the day a little tag that says ‘I am blessed to be a consumer in Australia.’  You are. We have got to this point through economic good fortune but most fundamentally by attachment to a set of values, values that have to do with caring for our fellows, values that see education for all as a human right, values that increasingly seek to remove discrimination among men and women, values that gave us Medicare, values that gave us social security. 

We worry that we may be squandering our minerals.  Fair enough.  But far more valuable than iron ore and coal and the Pilbara and wool and wheat, more valuable even than diamonds, are the values on which we build our society. 

The health service, at base, is about providing care, support, concern, treatment, cure, rehab, palliation and love to consumers.  We must keep that awareness in front of us – consumers know everything there is to know about health care and then some.

1 comment:

  1. Health Consumers NSW (HCNSW) is delighted to see Stephen Leeder's address to our Workshop0 (7-8 March) up on his blog.

    We co-hosted the event with Consumers Health Forum of Australia, being the state and national voices for health consumers respectively. Attendees were Community and Consumer Board members of LHDs and Medicare Locals, and their CEOs and Chairs.

    HCNSW is positioned to provide the link between health consumers from grass-roots through to Board and state level decision-making. Nothing about us without us!

    More about HCNSW: www.hcnsw.org.au, or call 02 8875 4622