ACT Launch of the Charter of Health Care Rights - 2009

The following was written by Janne Graham in 2009.

Introduction

The Minister has commented that initiatives like this are a long time coming. It is appropriate then that I use this opportunity to provide some historical context to the current Charter. It is instructive to learn from these earlier consumer experiences to help us respond effectively to this Charter. Because the stories about social change often involve significant individuals as well of appropriateness of time and place I will also indulge in a little name-dropping.

Historical Perspective

Australian Capital Territory

• Shortly after the formation of Health Care Consumers Association of ACT, the first health consumer organisation in Australia, around 1979 -80 members worked on a “Statement of Health Consumer Rights”. They drew on the statement of consumer rights endorsed by President JF Kennedy in 1962. In some ways we have come to find the “right to choose” from that document as problematic since the market has often offered us more and more product under the guise of choice without any appreciable difference or improvement in value. I’ve been inclined to explain in overseas forums that in Australia we believe in choice: take it or leave it!

At the time there was some lobbying from members to add the right to “a smoke free environment” – quite prescient.

The outcomes from this exercise provided the association with a framework for its work and its policy development. The regular triple fold pamphlet was produced and distributed through health centres and to community groups. A set of slides was developed to assist members when speaking to clubs and community organisations where the idea of rights and the term “consumer” were still problematic.

One of the drivers of this work was John McMillan, now Professor McMillan and Commonwealth Ombudsman.

• At various times over the years there has been some energy within ACT Health and its predecessors to respond to the consumer expectation for support in recognition of our rights. I don’t recall them all. In the early ‘90s I do recall some concentrated work by a middle level staff member in the bureaucracy developing and consulting on a range of drafts but they faded away. This was David Roberts, now I understand heading the Commonwealth office of Health and Ageing in Tasmania.

Nationally

• Consumers Health Forum of Australia from its formation in the late ‘80s had members working on a statement of rights. The organisation was funded by the Commonwealth Government to work on government areas of interest such as pharmaceutical reform and medical education. It was not, and never is easy, to get funding to work on consumer driven initiatives. So there was a bit of “robbing Peter to pay Paul” so that the work could proceed.

The outcomes included the ubiquitous pamphlets, now translated into key community languages. These were circulated through the expanding national network of health consumer and community groups. The principles became a resource in training consumer representatives and informing policy.

Two of the leading consumers working on this project were: Christopher Newell, whom I will speak about again later, and Hilda Bastian who later was a leader in the consumer arm of the Cochrane Collaboration and is now a well respected consumer researcher, currently working in Germany.

The original Safety and Quality Council had health consumer rights on its agenda but the work, as is often the case met significant resistance from influential clinicians and for one reason or another got lost in the bureaucracy. It is worth commenting that as the consumer role has been more accepted and the language of rights more acceptable the opposition has been more muted and couched more in demands for a need for statements of consumer responsibilities. This reflects little understanding that the rights claims are an attempt to even up the power imbalance between user and provider in health services: the issue is not, or should not be about consumer responsibility.

What is Different this time?

The Charter which the Minister has launched today is the product of negotiations with all stakeholders and through all states and territories under the auspice of the current Commission on Safety and Quality in Health Care. It is a response to health consumer expectations which had not been well met over the years.

Here I want to take a moment to acknowledge Christopher Newell, by then Rev. Dr, who was the consumer/community Commissioner and who continued to drive the rights agenda with passion and persistence. He died in June last year, a month before the Charter was launched by the Commission nationally. We owe him a great debt for this and much other work that he did to work for human dignity especially in the fields of disability and health. I personally believe that his untimely death was in part related to the failure of services and institutions to give him the respect, dignity and care he demanded for others. We owe him a great deal.

In the ACT we can be proud that the new consumer Commissioner is Russell McGowan a member of Health Care Consumers Association of the ACT and we know he is making his own significant contribution though the Commission among many other places.

It is notable that the Charter has still been consumer driven but this time it has been negotiated with clinicians and with government. We have what is called, in a phrase to make Don Watson cringe, buy-in. There has been a move towards partnership in the process thus modeling the expectations of the product.

It is quite apparent here today that we also have support, champions in management-speak, at the highest level.

The document itself has left behind the “responsibility” language but rather sets out how consumers, clinicians and the services might act to give life to the rights which the Charter endows

Where to from Here?

The task, as both the Minister and the Health Services Commissioner have emphasized, is to develop implementation plans to turn the rhetoric into reality. Consumers agree that we wish to see a move towards a legislative base which gives the Charter real teeth. It is essential too that in the ACT we find ways to move this work into the private sector. We agree with the Minister that an implementation plan should integrate the principles into all ACT Health operations – policy, planning, feedback mechanisms including linking to RISKMAN, and evaluation of services should be measured against them. Consumer representatives stand ready to assist in these processes but also will remain alert to ensure that implementation becomes a reality.

Some specific expectations include:

• Public and ongoing promulgation of the Charter to the public. For instance wherever there is Gideon (bible) there should be a Charter. This cannot be a one off activity. Continuity is essential.
• The high level champion commitment is valued but people come and go. One way of ensuring an ongoing commitment is to have consumers represented on selection committees for significant appointments. There are precedents for this internationally and within the ACT it has been used to good effect on a few occasions through The Canberra Hospital Board.
• Staff training in the implication of the Charter is critical, again on-going. Consumers can make an effective contribution to the planning and conduct of training.
• We would expect that the Charter issues would be caught up in professional contracts so that there can be accountability for contracted performance.
• An effective way of supporting the rights in the day to day experience of users of the services is to provide a genuinely supportive advocacy service. Health Care Consumers Association and other community groups are regularly faced with the stories of consumers which reflect the difficulty for individuals in navigating the systems and services. There are various models available. Now is the time for government to support research into an appropriate model or models for the ACT and to assist in establishing an appropriate service.

Conclusion

Robert Hughes in The Fatal Shore says that “…rights are never given; they always have to be taken”. Perhaps we have found a way to work for consumer rights in partnership. A Charter indicates that the rights have been given from authority to us. It contributes to equalizing our partnership in personal care and, by extrapolation, to policy and planning.

We welcome the Charter.