Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

I present the report of the Community Affairs References Committee on Lyme-like illness in Australia together with the Hansard record of proceedings and documents presented to the committee.

Ordered that the report be printed.

I move:

That the Senate take note of the report.

This report consists of three chapters. We talk about the patients and we outline the details of how the inquiry was conducted and the background to Lyme disease. We also talk about testing for infection and treating the illness. I remind the chamber that this is in fact the committee's second report on this inquiry. We tabled an interim report in May, where we articulated some of the details around patient illness, the nature of the illness and the divided nature of the medical profession on this, and that people feel stigmatised, bullied and harassed and that that makes people sicker. We articulated in that report the need for some further inquiry and what the committee would do if, after the election, the Senate were minded to re-refer this issue to us: we would like, or needed, to look at the issues around testing for the infection and treating people.

The first chapter of this report is titled 'Putting patients first'. The reason that we articulated that is that that is what we think needs to happen. For too long it has gone unacknowledged in this country that people are really sick. There have been arguments about whether this is classic Lyme, chronic Lyme or Lyme-like illness. In fact, there is a growing consensus now that we should not call it Lyme at all and that we should be referring to it as something else. A number of other names have been suggested to avoid the stigma that goes with Lyme. It is not just the stigma; it is the fixation on actual Lyme.

What I should articulate here is that we have had a lot of evidence from hundreds and hundreds of submitters and from a number of people that appeared before us. There is continuing disagreement over how you test for the presence of Lyme. There is continued dispute over whether the bacteria is actually in this country or not. I always stuff up the pronunciation of the American version of the bacteria that affects this, Borreliaburgdorferiand there are other types in Europe and Asia. There is continued dispute over whether that actually exists in Australia. But, while that argument has been going on, people have been sick. There is now research—and we heard again of the research that has been done on identifying other pathogens in ticks. At the moment, people are referring to the illness more as a tick-borne illness, because new pathogens are being identified here in Australia. We are yet to identify whether they can be transmitted to humans and what impact those pathogens could have on human health.

We make 12 recommendations, and they address these issues. The 12 recommendations are around testing and around how we can support the patients that are sick. We talk about the need for the Australian government Department of Health to engage with stakeholders following the publication—and this is the only time I am going to attempt to say this; I am looking at Senator Moore, because she knows I cannot pronounce 'serological' very well—of the review by the National Serology Reference Laboratory, which is commonly known as NSRL.

Doug Cameron (NSW, Australian Labor Party, Shadow Minister for Human Services) Share this | Link to this | Hansard source

I missed that! What was it?

Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

Yeah, yeah! It is the NSRL, Senator Cameron. They are currently doing a review of the serological assays used to diagnose Lyme disease, because that is in dispute at the moment. So there certainly needs to be discussion and extensive consultation with stakeholders once that review is done, and I am very pleased that review is being done.

The committee recommends that the Australian government increase funding for research into tick-borne pathogens as a matter of urgency. This funding should include funding for research on pathogens which may cause infection, funding for research on whether newly identified pathogens can cause illness in humans and funding for the development of diagnostic tests—that is where a lot of the arguments are—to detect infection by any newly identified pathogens endemic to Australia. It is really important that we have this research to look at these pathogens.

As I articulated, representatives from Murdoch University, including Professor Irwin, presented evidence to our latest hearing, where they identified more pathogens in ticks but in other vectors as well. That research is essential, and we need to make sure that is adequately funded. We make a number of other recommendations about the need to fund more research, in particular, to establish a clinical trial of treatment guidelines, with the aim of determining a safe treatment protocol for patients of tick-borne illness.

While we are doing research to identify possible pathogens, to identify the vector, we need to be treating people who are sick. We need to make sure that people who are sick are no longer stigmatised, no longer told that it is in their head. That is what patients are being told. People who are sick, who have a number of symptoms, are being told it is in their head. I know that if I were really sick and I were being told it was in my head, it would make me even sicker and worry. It may in fact affect my mental health if, when I am suffering, I am being told that it is all in my head. We need to acknowledge that people are sick and we need to support bringing the groups together. In fact, we recommend that a summit be held to start working out a way forward.

We also recommend that government allocate funding for research into medically appropriate treatment of tick-borne disease and that medical authorities measure the value of treatment in terms of patient recovery and return to health. The best treatment options must then be developed into clinical treatment guidelines. We also recommend that the Australian government Department of Health facilitate, as a matter of urgency, a summit to develop a cooperative framework which can accommodate patient and medical needs, with the objective of establishing a multidisciplinary approach to addressing tick-borne illness across all jurisdictions. By doing that, I think that will help to build confidence and relationships between the stakeholders, who are very deeply divided at the moment. If we are going to address this issue, we cannot afford to continue with the way it is currently being handled.

As I said, we made 12 recommendations, which I know my colleagues will also address when they get up to make their contribution. I would like to take the opportunity to thank all those people who made submissions and all those people who appeared before our inquiry. People shared some of the most personal details of their struggle with this illness and with the way they have been treated, and they were very generous with their time and in sharing that very personal information. So I thank them very much.

I thank our secretariat, who once again has done an outstanding job. As I said yesterday, the Community Affairs References Committee staff go above and beyond the call of duty. They have made a significant contribution with this inquiry. I hope that the work our committee has done will help to start to get this issue addressed very seriously, that people are acknowledged as being sick, that they get the treatment they need and that we put money into research to try to find out just what is going on. Something is going on. The committee are not claiming that we have solved this. We hope our recommendations will help us find a way forward on this very difficult issue.

Jacqui Lambie (Tasmania, Independent) Share this | Link to this | Hansard source

I rise to speak today on the issue of Australian Lyme disease, more commonly known as the tick-borne disease. I want to thank the committee. A lot of the evidence was really heart-wrenching—it really was. It is right up there with veterans' stories, I can tell you. It was just heartbreaking to see the impact this is having on the people who are affected and their families.

The public hearings opened my eyes to the dysfunction of the medical system we have in this country. I was stunned and ashamed. Our government and the medical system have allowed a great number of people to suffer, simply to debate whether or not Lyme disease exists. You have heard me talk before on medical issues, but, like I said, this one leaves me determined to make things right for the thousands of people who have been bitten by ticks in their own country or in other countries and have been left sick, seriously debilitated, dying and stigmatised by the medical community, who is meant to be there to help them. They are told it is in their heads.

Just like the good senator, Senator Siewert, said, I can tell you I have never seen a child choose to live their life confined to a wheelchair. During my brief time with the committee, I heard heartbreaking stories of neglect, where people have been discharged from hospital to die alone, completely abandoned by our medical system here in our own country. I heard of children whose lives have been ruined due to the disease our medical experts maintain we cannot possibly have here in Australia. Ticks come in on birds that fly in and on imported livestock; people are mobile and they travel. Many in the medical profession would have us believe that Australia has magical borders that no tick might even pass through, which is absolute rubbish. Yet, in reality, people are being bitten by ticks in their own backyards and they are getting sick. Some develop meat allergy and some have seizures. Many more have a massive list of symptoms that put them in wheelchairs, unable to go to school or to work to earn a living.

We could help them, when they are bitten by a tick, with a simple course of antibiotics, and even if it is for an extended period of time there seems to be 70 per cent success rate by using this method—but not our medical folks, not our Australian medical doctors here. Our medical folks argue about that, too. Just recently they started a new campaign to further stigmatise these people as the creators of 'superbugs' and use this as a justifiable reason to withhold antibiotics that will save their lives. Our medical people and scientists are caught up in a ridiculous game of semantics; they say, We can't find that bug here', but they do not tell you they have not bothered to look for more than 25 years, so it is a self-serving argument, really.

What I want to know is: why won't we prioritise funding to sift through the questions and end the 25 years of suffering? During the inquiry I could not believe what I was hearing from our health department, who had done nothing in the four years since this issue was raised but 'discuss' it. A bunch of highly paid bureaucrats sit by 'discussing' the topic while Australian people suffering from years of illness and medical neglect have taken their own lives due to the lack of treatment and help available. I cannot imagine how appallingly helpless these people must have felt. This is shameful Australia; it is absolutely shameful.

And there are thousands still out there suffering. An internationally renowned expert on Lyme disease who gave evidence at our hearing referred to the 'dysfunctional politics' and the 'political-scientific quagmire' to describe the way in which our health departments and medical system have handled this issue. I am fairly certain that, when Prime Minister Malcolm Turnbull refers to innovation and agility, this is not how he wants the Australian medical and scientific system to be viewed.

This situation must end with the tabling of the Senate inquiry report. It is not acceptable to dismiss these people because the medical system, the pathology system and the bureaucrats who administer the health system that is meant to support them have all colluded to deny a disease that absolutely exists in Australia. I will not be letting this go, and I have a feeling that especially the ladies on the committee will not be letting this go, either. So, this government has no other choice but to acknowledge that there is an issue here, prioritise the funding needed for research and, while that is going on, do something proactive to help those people who are sick with this disease in a way that is neither hostile nor discriminatory and immediately commence an awareness campaign to alert people to the dangers of tick bites and a medical education campaign so that doctors and the medical industry know what to do when faced with a patient who has this illness.

You know, there were some really harrowing stories. As I said before, we need to do something. If you want to talk about time-sensitive—this is now time-sensitive. We have done this inquiry and the recommendations are there, and I do not want to see those recommendations picked up and put on a shelf. These people have been through enough. This is time-sensitive. This is beyond time-sensitive. So, I am asking those across there to please invest some money in this and do the right thing, do the summit, bring these people to the table and finally bring this out in the open, because there are a lot of sick Australians out there. Turning our backs and saying that we do not have a tick-borne disease here is absolute rubbish. It is time to open our eyes, take it out of the too-hard basket and deal with it once and for all.

Claire Moore (Queensland, Australian Labor Party, Shadow Minister for Women) Share this | Link to this | Hansard source

Taking up from where Senator Lambie finished in her contribution, I think it is very important that we as a committee and we as a parliament accept that we have come a long way on the discussion of—I am hesitant to use the term 'Lyme'; I think one of the messages of our committee inquiry has been that the concentration on the definition has actually caused movement away from looking at the real issue. And the real issue is acknowledging that there are people in our country who are ill and there are people who are expecting that there will be respect and treatment for the condition that they have. But unfortunately, because so often the terminology is 'Lyme', you find yourself slipping into calling it 'Lyme', 'Lyme-like', 'classic Lyme' or the other terms that have been used.

As Senator Lambie said—and Senator Siewert said it as well—the time to act is now. But I also want to add that I think that if you compare where we were in this discussion six months ago with where we are now, there has been considerable movement, although certainly not at the speed at which many people hoped for. But I remember very clearly at Senate estimates in this place when any issues were raised about this condition there was a blanket refusal by the department and by the medical profession as a whole to even acknowledge that there was a condition that impacted so deeply on people and that was caused by tick-borne infection in Australia. We were subject to long explanations about how this condition started overseas, how the testing regime operated, and acknowledgement that there was indeed a condition called Lyme that had been identified in parts of America and in Europe.

In fact, we sat through extensive conversations about this, and still, at this stage, we have evidence from our committee inquiry that anyone who has exhibited symptoms and had testing when they said they had been bitten by ticks overseas has been given the acknowledgement that they would be suffering from a Lyme or Lyme-like condition. However, of the number of people who came to see our committee, the real point was made by the people who came to tell us about their condition, their pain, their suffering and their frustration when they had never been in the overseas countries but knew that they had been bitten by ticks in Australia. We had so much evidence, all of which is on record, and I really encourage people who are interested in this issue to go and look at the evidence we received and hear the response from very many people who felt not only that they had been dismissed by the medical profession in this country but also that they had been rejected, discriminated against and treated without any respect at all. As Senator Lambie said, that causes shame to all of us.

What we have seen in the I think six month from when we started pushing on this issue recently—although the issue has been around in the Community Affairs space for a couple of years—is that there has been significant movement, which was quite evident in the evidence before this extended committee inquiry and also in the report that we are bringing down today. I want to pay credit to the secretariat of the community affairs committee, who often go unrecognised for the skills that they have; both in handling the range of people who come to see our committee, and building relationships with them, talking to them and understanding their needs, and also in the presentation of reports such as the one we are presenting today.

I think this report really highlights the areas of difference, and also highlights where we can take some action. These are not monumentally large steps. No-one claims that we have solved the problem by producing this report, but I think there has been a movement towards people at least acknowledging the medical issues and the concerns, and also some movement within the medical profession—although, in this case, I would like to say that this movement has not occurred in the AMA, who have continued not to respond to the questions the committee have put to them. But there has been a movement towards a willingness to at least discuss things, to acknowledge that there are issues there that we can work on, and to give the people who have exhibited horrific symptoms, which they believe are linked to being bitten by ticks, an acknowledgement that their conditions are real, and that they are not hysterical. They need to have some response from our medical and research bodies in Australia.

The recommendations in this report about which I am most pleased are, firstly, the recommendation which talks about clinical trials, finding a clear indication for clinical trials on this condition and for effective treatment protocols, and acknowledging that this is a medical issue; not a psychological issue, not a psychiatric issue, but a medical issue. The recommendation to have those clinical trials raises the issue to another level, and I truly hope that this recommendation will be taken up. Secondly, the ongoing clause that we put in the report for scientific, well-resourced research projects which allow an acknowledgement that there may be—and I think, personally, although not being a professional in this area, are—reasons which link ticks in Australia, and the pathogens found in these ticks, to people's illnesses. There is a range of recommendations, but they are the ones which I am most hopeful will move this discussion to another level.

I am also very pleased that our report was structured starting with the title, 'Patients first'—that is, I am pleased that, in the structure of our report, we have put those people first—the people who have agitated and demanded and made their voices heard about why this issue should be on the agenda—which is indeed where they should be. Those people should be the No. 1 focus of our response.

Senator Lambie and Senator Siewert have both spoken about the bravery, the honesty and the extraordinary courage of the people who came to give us evidence. Their stories of their illnesses, their stories of the impact on their families, their stories of family loss when people have been driven to suicide because of the conditions they had—all of that was shared with the committee. I make the point that these people have raised their voices, and we have no right not to listen. In fact, there should be no question about the fact that there must be action. I am very hopeful with this particular report that we can move forward. I seek leave to continue my remarks.

Leave granted; debate adjourned.

Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

I present the report of the Community Affairs References Committee on the medical complaints process, together with the Hansard record of proceedings and documents presented to the committee.

Ordered that the report be printed.

I move:

That the Senate take note of the report.

This committee inquiry has received a significant amount of evidence. We focused on two particular areas. We had quite long terms of reference for the inquiry, but we have specifically—and you will see this in the report, Mr Acting Deputy President O'Sullivan—looked at two key areas. The first of those is the specific issue around bullying and harassment in the medical profession in general—and I will come back to that in a minute. During the inquiry we also found some broader, systemic issues in Australia's medical complaints process, which we have also investigated; that is the second area we have looked at in the report. I know my colleagues will be talking further about this. We received evidence about the use of the complaints process to make vexatious claims and to, in effect, bully and harass others in the medical profession, which is deeply concerning. We heard a great deal of evidence that bullying and harassment remains an issue in the medical profession. We heard, in particular from Australian medical students, evidence which caused me deep concern about the fact that the students continue to be bullied. The evidence we received said that—I think it was half of students surveyed who thought that it was part of the process of learning—they thought it was part of the teaching process, which of course it should not be.

We have made six recommendations. Most of those recommendations go to issues around bullying and harassment in the medical profession. Our sixth recommendation relates to the broader systemic issues, which I am sure my colleagues will touch on in their contributions. Because of that issue—and many of those issues went beyond the scope of the current inquiry, and it has raised broader issues about the whole of the Health Practitioner Regulation National Law process—we believe that in fact another committee inquiry is needed, with narrower terms of reference that specifically relate to the Health Practitioner Regulation National Law process, looking at things like the implementation of the current complaints system under the national law, including the role of AHPRA and the national boards; how the current process is being implemented; and whether the existing regulatory framework established by the national law contains adequate provisions for addressing medical complaints. There are a number of points in the terms of reference, such as the adequacy of the relationship between the bodies that are responsible for handling complaints. There is quite an extensive process that is used for medical complaints. The submitters agree that in general the process is working, but there are enough submissions and concerns raised with us to indicate that there are potentially some issues there that need further investigation.

So the committee has asked that we lodge a motion to refer the Health Practitioner Regulation National Law with the particular points that we feel need further investigation. So I am tabling the motion for a further Senate inquiry by the Community Affairs Reference Committee on that particular issue.

I am aware that we are going to run out of time, so I am going to limit my remarks, but I will take this opportunity to thank those who came forward and shared their personal experiences of bullying and harassment, which is quite personally painful for many people, and the medical practitioners who came forward and shared their concerns. I also send a message out to the individuals who made submissions to the inquiry. They were read. They were taken notice of. This committee was never designed to look at individual cases and come up with an answer, but the submissions have clearly raised issues and made us very deeply aware that there are a lot of concerns with the process and they require further investigation. I just want to put that on the record.

I would also like to put on the record once again our thanks to our secretariat, who have done outstanding work. For those that pay attention to the Community Affairs References Committee, this is the third report we have tabled this week, and that required a lot of work from not only all of the senators but particularly our secretariat. I cannot praise them highly enough. I will cut my comments short there so that others get a chance to comment on this inquiry.

I give notice that on the next day of sitting I shall move:

That the following matter be referred to the Senate Community Affairs References Committee for inquiry and report by 10 May 2017—

Inquiry into the complaints mechanism administered under the Health Practitioners Regulation National Law, with particular reference to:

(a) the implementation of the current complaints system under the National Law, including role of AHPRA and the National Boards;

(b) whether the existing regulatory framework, established by the National Law, contains adequate provision for addressing medical complaints;

(c) the roles of AHPRA, the National Boards and professional organisations—such as the various Colleges—in addressing concerns within the medical profession with the complaints process;

(d) the adequacy of the relationships between those bodies responsible for handling complaints;

(e) whether amendments to the National Law in relation to the complaints handling process are required; and

(f) other improvements that could assist in a fairer, quicker and more effective medical complaints process.

Peter Whish-Wilson (Tasmania, Australian Greens) Share this | Link to this | Hansard source

The medical complaints process was set up to investigate and solve issues such as bullying and intimidation in the medical profession. The evidence the committee heard strongly suggests that the medical complaints process itself—the notification of an investigation and the investigative process itself—is actually being used to bully and intimidate some medical professionals.

I came to this committee late. I have heard from a number of medical professionals in Tasmania about complaints under the AHPRA investigative process. One of them in particular really stood out, a local surgeon in my northern home town of Launceston. He is an orthopaedic surgeon who has been there nearly 30 years. He spent that last 30 years cutting people's limbs off because of obesity and diabetes. He thought one day: 'I have to do something about this. I have to be more than a technician. I have to understand why I am confronted with this issue.' And he fully understands the cost to the community and our budget on health care and the impacts of those issues. He started looking into a holistic preventative health-care approach which, of course, involved diet. He spent many years researching that himself. Eventually he came to the conclusion that his obese patients and those with diabetes needed to have the right diet if they were going to tackle this issue. There is an old saying: pioneers get the arrows and settlers get the land. This doctor, Dr Fettke, is a pioneer and he has a lot of arrows sticking out of his back. He has been totally outspoken about this issue, and no doubt he has ruffled a few feathers along the way to get his voice heard around diet.

I became aware of Dr Fettke's situation in Tasmania and an AHPRA investigation. The day I met with Dr Fettke we had a discussion. I then put out a statement about his situation. Launceston had lost seven specialists at our local hospital in six months and, believe me, we have a lot of problems attracting and retaining medical professionals in Tasmania. I was really worried that we were going to lose another good specialist if this issue was not dealt with. I saw Dr Fettke and his wife in the markets, and they came up to me and gave me a hug—let me tell you, in a public place the emotion was very clear—because someone had actually spoken out on their behalf.

I actually had a series of formal meetings with Dr Fettke because I wanted to understand his situation, and it became very clear to me that something was badly wrong with this investigation. His complaint was like what I had heard from other medical professionals. What was becoming evident through witnesses in the inquiry is that these things drag on for way too long, and in some cases years: five or six years of investigation and having their names dragged through the mud. Goalposts keep getting moved. Every time they meet the investigative requirements they are asked to provide new information. It starts being seen as bullying and harassment, which has an impact on their mental health, their work and their ability to do their job.

The committee heard that other surgeons, including brain surgeons, have felt they have been run out of this country by the AHPRA investigative process—a never-ending series of investigations to the point that they just cannot cope any more. This was a consistent theme that the committee picked up on.

Although we had to hear Dr Fettke's case and others, these cases were important to the committee as case studies about systemic issues within the AHPRA investigative process. We absolutely need a good regulator. We need to have confidence in our regulator. We need to come up with better ways to make the investigative process quicker, fairer and more effective. We need to look at potential changes to the investigative process, and I am very glad that the committee has recommended a separate, much more succinct inquiry into AHPRA and how we can improve the process.

AHPRA has been in place for five years now, but it seems to me that the culture within this organisation, from what I have seen, definitely needs a shake-up. 'Who is policing the policeman?' That is what I would say. Who is policing the policeman? Nobody—absolutely nobody. There are a lot of issues that I do not have time to go in to about the transparency of their evidence, the way they operate, the way they function. It definitely needs some light shone on it and some disinfectant. I often do not use this kind of language, but I have really been quite stunned and surprised at some of the evidence that we heard from medical professionals. Sometimes mistakes are made. Sometimes there is definite misconduct. We absolutely have to have a process that stamps that out.

We also need to make sure the young Australians want to go into medicine, nursing or health care and become healthcare practitioners. But when we hear evidence like this of a culture, a hierarchical culture, within the healthcare system, a culture of elitism that starts at university and the bullying and harassment, it is not the kind of thing I would necessarily recommend that my daughter go into. I think there is a much bigger issue at stake here, and it is incumbent on us to solve this problem and make sure that we get to the bottom of it. I will leave it at that, as I said, because other senators want to talk. I seek leave to continue my remarks later.

Leave granted; debate adjourned.