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A critical challenge for health reformers: how to hear from those with the greatest need?

Leaders of the North Coast NSW Medicare Local recently described a series of public meetings and discussions aimed at involving the general community and clinicians in primary health care reform. Other Medicare Locals are also seeking to engage their communities in their work.

How can they ensure that the voices of the people who are in greatest need are heard when policies and services are being developed?  Will they otherwise fall into the trip of simply catering for those who are already relatively well served?

In the article below, two health reformers from the north coast of NSW, Vahid Saberi and Professor Lesley Barclay, argue that health planners and services must try to overcome what these authors call “the inverse voice law”, which holds that those who most need to be heard have the most subdued voices and often do not get heard.

And they introduce us to two characters, “Barbara” and “Mavis”, who exemplify this law (which, from Croakey’s perspective, can also be applied to the media industry and more widely).

***

Health and social inequities won’t be addressed if we don’t get better at listening  to Mavis 

Vahid Saberi and Lesley Barclay write:

Much has been written about the “inverse care law” – that the availability of, and access to, good medical care tends to vary inversely with the need for it. Simply put, those whose need for healthcare is less use more health resources compared with those who have more health problems and need more healthcare.

There are a number of factors that contribute to this notion of inverse law, and we would like to highlight one that we consider topical and significant, with far reaching implications for health reform – especially the current work of Medicare Locals in determining service gaps.

In general, those who have the loudest voices in society draw the greatest attention and thereby a greater share of resources. In our view what contributes to the inverse care law is what we call the “inverse voice law” – that is those who need to be heard the most have the most subdued voices and often do not get heard.

Medicare Locals have been given the task of hearing local voices, assessing local need, designing care locally and allocating resources to address the greatest needs.

Unless all voices are heard – especially those whose voices are either drowned by the louder voices or are not speaking to planners or in the public forums – we will continue to service those who already have good access. We will design care which responds to the voices we hear most readily.

Allow us to introduce you to “Mavis” and “Barbara”. Their stories, as told below, are real in the sense that they combine the realities of a number of people we know. But neither Mavis nor Barbara can be identified as any particular individual, in order to preserve their anonymity.

One lives in western Sydney, the other in a largish regional centre in NSW. They live in different circumstances. Their stories illustrate our argument.

Barbara is 68 years old. She has two adult children; one lives in Brisbane and the other in Coffs Harbour. Barbara is a widow. She was a legal secretary until three years ago when she retired.

Barbara’s husband Greg, who was 11 years older than her, died of Parkinson’s disease five years ago. Barbara lives in East Lismore in a white weatherboard home which she has tastefully renovated. Barbara takes good care of herself, ranking diet and exercise as very important. She does not smoke and has her own GP close by. She also accesses a chiropractor, nutritionist and physiotherapist (mostly bulk-billed or paid through her insurance cover) to manage her chronic ailments.

Barbara has an interest in health matters and has strong community connections. She works occasionally as a volunteer visitor in aged care facilities and values her wide circle of friends. She regularly writes letters to the editor of her local newspaper on a range of topics including those her friends raise with her – thereby giving voice to their issues.

She is a mainstay of the Lismore Parkinson’s Support Group.  Recently, when the Medicare Local had its public meeting, Barbara attended the meeting. She was confident in articulating issues related to health.  She is also a member of a local Community Health Advisory Group and brought the groups’ priority list of concerns and read this at the meeting.

Mavis is 46 and lives in a housing commission home in Bankstown, western Sydney, with her unemployed husband, Steve, 12 year old son Danny, and her 6 year old daughter Lisa.  Mavis left school at 15 and has worked as a shop assistant on and off during her adult life. A shy woman, Mavis has few friends and no support from family, as they live in north-Queensland.

Mavis has tried giving up smoking a number of times. It does not help that Steve smokes inside the house. She finds it hard to make ends meet and often resorts to fast food from the McDonalds which is close-by. Mavis reads little and spends most of her time at home, watching television, when not cleaning or cooking. They have no computer at home.

Mavis has diabetes and is slightly overweight and often tired.  She does not have a regular GP and attends a practice with six doctors which bulk-bill when she or one of the family is sick. None of the doctors know her by name and she usually sees a new face at every appointment.

Mavis attends the Hospital Emergency Department (ED) if she is really worried or they need care after business hours or on the weekend. She finds it difficult to talk to any of the GPs in the practice due to her shyness.  She would not know what other health services are available, how to access or be able to pay for these.

As a baby Danny had severe colic.  He is often ill with colds and stomach aches and has a speech impediment which makes him withdrawn. He is not doing well at school. One of the GPs suggested speech pathology for Danny a few months ago, but he has not received the service as yet. Mavis worries about Danny but feels helpless.

Barbara and Mavis are very different in their use of health services. Mavis has greater need for a range of health and social services. Barbara on the other hand is middle class, knowledgeable and with assets that help her manage the system. Compared to Mavis, Barbara uses more health resources.

Mavis does not attend consultative meetings where she could be heard. Mavis, however, is the voice that needs to be heard as we design new health services through the new Medicare Locals.

Barbara on the other hand attends meetings, writes letters, is active in the community and is articulate. She has a greater voice.  The overall system, however, is poorer and will not meet many people’s needs if we do not hear Mavis’s voice.

This we call the Inverse Voice Law – less voice for those who need to be heard the most.

How do we give tens of thousands of Mavises in the community a voice?

In our conversations with colleagues and consumers, some suggestions have been made. For example, we could go to the hospital Emergency Departments (ED) waiting rooms and sit and listen, joining in conversations.

People like Mavis, we are told, tend to wait for hours in EDs. Despite a lot of waiting, they are often found in the patient category, “did not wait”, that the EDs collect.

Even if we get in touch with Mavis, we have to learn how to approach and listen to her – otherwise we will not hear what we need to learn.

Over the years we have learned to talk to the Barbaras, and they have learned to talk to us, but we have very little experience in listening to the Mavises of our communities.

In one of the many consultations we have had about reaching the voices that we do not hear, a “Barbara” suggested that she would be willing to contact and become the voice for Mavises. This is a well-intended, sincere offer but one with risks.

Certainly it is possible for Barbara to understand the structural challenges that Mavis and her family face; for example, a poor transport system or the obvious lack of availability of certain services.

But to understand how to design services in a way that address the needs of the disadvantaged and the voiceless in the community, we have to converse with, and hear from, them.

Having Barbara listen to and convey Mavis’s challenges is like imagining that women can talk for men or a non-Aboriginal person knows what the Aboriginal experience is.

Can Barbara, or indeed can we as professionals, listen with empathy and objectivity, without a paternalistic attitude, and understand the reality of the challenges that Mavises face?

Often as professionals we think we know, or can appreciate, by reading a report, or having a focus group,  what Mavis’ experience is and how to design a service that meets her and her family’s needs.

The solution, in our view, is to empower Mavis and build her capacity to speak for herself and her family. Nothing can replace this.

We need to make a place for Mavis in our consultations so we can hear her voice. We need to do this now if we want to see change.

This requires a recognition that unless we can hear the voices that we don’t hear now, and create opportunities for these to influence the design, delivery, monitoring and evaluation of health care, we will continue to have significant health and social inequities.

There are no short cuts if we are truly interested in addressing the inverse voice law and health and social inequities; listening and capacity building has to be at the core of our approach.

• Vahid Saberi is CEO of the North Coast NSW Medicare Local, and Adjunct Professor, School of Health & Human Science, Southern Cross University, and Senior Research Fellow, Sydney University.

Lesley Barclay is the Director of the University Centre of Rural Health North Coast. She is currently a Board member on the North Coast Local Health District and chairs the National Rural Health Alliance.

 

 

 


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