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Standing Committee on Health, Aged Care and Sport
11/02/2019
Sleep health awareness in Australia

BAALMAN, Mr Malcolm, Senior Policy Officer, Public Health Association of Australia

BARNES, Dr Maree, Immediate Past President, Australasian Sleep Association

BIN, Dr Yu Sun, Member, Public Health Association of Australia

BINNINGTON, Ms Pamela, Director, Strategic Workplace Health and Safety Policy, Safe Work Australia

BRUCK, Emeritus Professor Dorothy, Chair, Sleep Health Foundation

BUCKHAM, Mr Robert, Manager, Strategic Policy, Pharmaceutical Society of Australia

CHADWICK, Mrs Michelle, Director, Sleep Disorders Australia

CLANCY, Ms Rosemary, Director, Let Sleep Happen Pty Ltd

COOK, Dr Jane, First Assistant Secretary, Medicines Regulation Division, Department of Health

EASTWOOD, Professor Peter, President, Australasian Sleep Association

GRUNSTEIN, Professor Ronald, Head, Sleep and Circadian Research Group, Woolcock Institute of Medical Research and Central Clinical School, University of Sydney

HAMILTON, Associate Professor Garun, Royal Australasian College of Physicians

HILLMAN, Professor David, Deputy Chair, Sleep Health Foundation

MILLER, Dr Stuart, Director, Canberra Sleep Clinic

MOORE, Mrs Sharon, Speech Pathologist, Canberra Sleep Clinic and Well Spoken

RYAN, Mr Michael, Director, Medical Benefits Division, Department of Health

WEISS, Mr David, Assistant Secretary, Preventive Health Policy Branch, Department of Health

WELLINGTON, Ms Bianca, Acting Branch Manager, Legal and Workplace Health and Safety Strategy Branch, Safe Work Australia

WILLIAMS, Mr Anthony, Chief Executive Officer, Alertness CRC

WOLFFS, Tammy, Senior Policy Officer, Carers Australia

Evidence from Professor Grunstein and Mr Williams was taken via teleconference

Committee met at 09:18

CHAIR ( Mr Zimmerman ): I declare open this public hearing of our inquiry into sleep health awareness. Thank you all very much for joining us in such large numbers. Before we begin, I ask a member to move that the media be allowed to film proceedings today in accordance with the usual rules. There being no objection, that is carried. I remind everyone participating today that these are formal proceedings of the parliament. The giving of false or misleading evidence is a serious matter and could in some circumstances be regarded as contempt of parliament. The evidence you give today will be recorded by Hansard and does attract parliamentary privilege. What I'm going to do, because we have such a large number, including two organisations by telephone, is start by inviting you all to make a short opening statement. This is going to be a test of your capacity and discipline. We're suggesting it should be no longer than two minutes, otherwise we will find that we will finish opening statements when we are about to close. Without wanting to be rude, if anyone is seriously straying over the two minute mark, then I will be practising a little bit of a ding on the water glass. If I do that, it's a bit of a hint that you might like to wind up. That will obviously maximise time for questioning.

I'll give a little bit of a tip because we're quite experienced in doing statements in set periods of times: if you've got a computer and can do a word count on your opening statement, if you've written anything more than 350 words, it will get you into trouble. We might start off with the two organisations that are online. Then we might move clockwise around from you, Ms Clancy. I should also have clarified, it's one opening statement per group, so you can't sneak in an extra two minutes. Professor Grunstein, are you happy to kick off?

Prof. Grunstein : Yes. Firstly, thank you to the committee for giving me the opportunity to speak today. I'm a professor of sleep medicine at the University of Sydney and the Woolcock Institute. Our submission is No. 112. You can't say much in two minutes, but I want to pick one area that I think strongly about.

Contrary to what has been written in submissions, we do not have a fully skilled-up workforce in specialist sleep medicine. The Royal Australasian College of Physicians' submission says:

The Royal Australasian College of Physicians recognizes Sleep Medicine as a subspecialty of internal medicine. … This involves … a period of one to three years in full-time sleep medicine training.

With respect, I think this gives the committee a false sense of security. Virtually all sleep medicine practitioners spend most of their time in respiratory, not sleep, medicine and never get three years training in sleep medicine. Even with sleep training, there was an overwhelming emphasis on respiratory sleep disorders. For example, in a one year training program in sleep medicine, a trainee is only expected to see 30 new patients with non-respiratory sleep disorders—a truly worryingly low number, considering they're meant to see 500 new and old cases.

In most countries around the world sleep specialists come from a whole range of backgrounds—neurology, psychiatry, internal medicine, anaesthetics and so forth. Our current sleep medicine training is unidimensional, and I'm concerned that our patients are not well served by the reduced emphasis on non-respiratory sleep disorders. I think patients will comment about this, perhaps, later.

I think the committee should recommend a review of specialist sleep medicine training, involving the relevant colleges and the Australian Health Practitioner Regulation Agency. This committee should recommend that AHPRA recognise sleep medicine as a truly independent specialty separate from respiratory medicine. The RACP say they recognise sleep medicine as a subspecialty of internal medicine; they need to give that teeth. We have physician specialties in areas such as clinical genetics, palliative medicine, pain medicine and sexual health medicine, so why not in sleep medicine?

CHAIR: Thank you very much. You were almost on time, but it was a very good start.

Mr Williams : I represent the CRC for Alertness, Safety and Productivity, commonly referred to as the Alertness CRC. I apologise that I can't be there in person today, but I would also like to thank the committee for establishing an inquiry on such an important issue for all of us. Through our consortium of academic and industry partners, we're well aware of the role sleep has as a pillar of health and wellbeing, and the need for much greater awareness across all sectors of the community. The mission of the CRC specifically over the last six years has been the development of new tools to manage sleep loss and sleep disorders, both in individuals and across organisations.

Our focus has been workplace safety and productivity, where we know the combined effects of inadequate sleep lead to preventable errors, accidents and injuries, especially in high-risk environments. Through the very effective CRC program and the strong commitment from industry partners, we continue to develop a portfolio of novel product concepts and new tools designed to improve sleep health and alertness management. However, industry-driven, targeted research remains a very crucial ingredient for ongoing innovation in this area, an area that can provide such meaningful dividends in terms of improved productivity and safety across all sectors of the community. Effective research translation pathways supported by appropriate policy and regulatory settings are also crucial in terms of the potential uptake of new technologies, and, of course, behaviour change and modified workplace practices that prioritise the importance of sleep are also critical to realising the benefits of the management of sleep health across all sectors of the community.

Ms Clancy : I'm from Let Sleep Happen and the Sydney Sleep Centre, and I do insomnia CBT treatments. The Australian Bureau of Statistics in 2016 analysed drug-induced death in 2016 and found that benzodiazepines were the most common substance present in accidental and intentional drug-induced deaths, being identified in 663 or 36 per cent of deaths. The vast majority of these deaths were accidental—over 70 per cent. That means over 460 of 663 deaths were accidental. Benzodiazepines are prescribed for anxiety and insomnia, but are prone to tolerance and addiction, and dangerous when taken with other substances. In over 96 per cent of those drug deaths where they were present, they were taken in conjunction with other drugs, including alcohol.

So how do we get to accidental overdose? The psychology of accidental overdose starts with memory loss. All the major benzodiazepine and BZRA manufacturers warn consumers of confusion and memory-loss side effects on these. If you add in the psychological processes of habit formation, attribution change, and intermittent reinforcement, the stage is set for accidental overdose. Malcolm Lader talks of the inability to stop short-term sleep medication use becoming long-term use. You're not short-circuiting an insomnia habit when you start the medication; you're forming a medication-taking habit—a habit of attributing sleep success to sleep medications. Attributions shift easily to confidence in medications when you already don't trust your brain to regulate sleep. You have insomnia. Initial good sedation and sleep confirms your beliefs, so you keep using them. Then tolerance to the medications develops, they become ineffective, and you need higher doses to get an effect. Overdose risk increases, especially if adding in other sedatives to achieve sleep. The intermittent reinforcement is when we can't predict when a reward will come, so we escalate our behaviours to induce the reward—like playing pokies. With amnesia side-effects increasing with the increasing dose, escalated frantic dosing behaviours due to variable sleep 'reward' mean that accidental overdose risk is increased. That's why we need to unite to promote insomnia CBT.

Dr Miller : I'm a sleep physician, and we are clinicians working in a big group here in Canberra. There are three issues I'd like to raise. The first is we are seeing veterans with post-traumatic stress disorder: this is fundamentally a sleep condition. These folks have nightmare content which disturbs their sleep. That leads them to be tired during the day, they lose their appetite, they're depressed, they put on weight; that causes stress in their bones and joints, it leads to immobility and further weight gain, and then they develop sleep apnoea, which further fragments their sleep. This is a treatable condition but fundamentally we can't cure it in many patients. So I would like to propose that the committee consider supporting groups like Phoenix Australia, the centre for mental trauma disorders in Melbourne, to prospectively assess at-risk groups, like our service personnel, by assessing their personality, their sleep habits, the circumstances of their trauma et cetera.

Secondly, why are we sleepy? There are two reasons. Firstly it is their sleep debt and secondly it is their circadian rhythm. We all kind of get sleep debt; the longer you're awake, the sleepier you are. But circadian rhythm is overlooked. For example, jet lag—what efforts do we take to support the $47 billion tourism economy as people travel east and west into our country? What advice do we give to people struggling with jet lag? Essentially none. Our tourists should be given advice on how to manage jet lag so that they can arrive fresh and enjoy our wonderful country. The planes should have red lights glowing at the appropriate time and changing to blue lights, instead of just running by a meal service schedule.

Thirdly, we are sitting on the edge of an Asian obesity epidemic. Asian people structurally have a predisposition to upper airway obstruction; with a little bit of weight gain they're in big trouble. Thirty per cent of Australians are non-Caucasian now. Asia is sitting on a disaster in the next few decades. We've got to be prepared. I don't have any solutions for this but I'll pass over to my colleague, Sharon Moore.

Mrs Moore : Thank you.

CHAIR: It's one per organisation.

Dr Miller : Okay. Sorry, Sharon.

Mrs Moore : That's okay. No worries.

CHAIR: But we'll come back to you at questions, I'm sure.

Mrs Moore : Yes. No problem.

CHAIR: The college?

Prof. Hamilton : Thank you. I'm representing the Royal Australasian College of Physicians. I've also been the outgoing clinical chair of the Australasian Sleep Association, respiratory and sleep disorders physician. The committee has heard a lot about how incredibly common inadequate sleep is. Up to 40 per cent of Australians have inadequate sleep and at least half of that is due to medical sleep disorders. Despite this, sleep disorders and poor sleep are underreported and underdiagnosed and, therefore, inadequately addressed, both by primary health care and in specialist practice. We need not only public education to increase awareness in the public, but we have to couple that with improved training pathways, both for specialist sleep medicine practice, as already highlighted by Ron Grunstein, with a better focus on non-respiratory sleep disorders, but also by particularly focusing on the training and skilling of primary health care and allied health. Unfortunately, there is very minimal training in sleep disorders in medical schools and in general practice training, and they're not equipped to recognise and deal with sleep disorders adequately.

The final point that I wanted to make in the opening statement is around the better regulation of therapies. We have therapies that we know work, such as CBT for insomnia, that we need to get out into the community more. We have other great therapies for conditions like sleep apnoea that work but need better regulation so that the right treatment is getting to the right person. For people with non-respiratory sleep disorders who require medications, amongst other things, removing barriers that may exist to accessing those.

CHAIR: You have another three seconds if you want it. Oops. They're gone. Safe Work Australia. Sorry, I've passed by Mr Buckham.

Mr Buckham : Good morning. I'm from the Pharmaceutical Society of Australia. The key points I would like to get across to the committee this morning is that pharmacists across Australia are seeing people who are struggling to manage a sleep problem. They will present seeking to purchase medicines over the counter to help get to sleep. Pharmacists are also seeing, in clinical management medication reviews, people who are either misusing or have progressed prescribing of benzodiazepines and other hypnotic medicines who are now struggling to reduce the use of these. Many pharmacies are also providing services for obstructive sleep apnoea because, as people have come into pharmacies, there's an unmet need where either people have not been aware that they're snoring or other complaints are a signal of a health concern. So the pharmacy service will screen these people and either facilitate their management by referring them to a medical practitioner for a proper medical assessment or put them through a structured model of care that is supported by practice guidance and supported by standards and expertise to provide support through CPAP machines to assist the management of their sleep apnoea. Through these services, people have really found a difference in being able to manage their day-to-day lives. They're able to move around better. We've had stories of couples who are now able to sleep and are back in the same bed together because someone's snoring has been managed. So there's a role that pharmacists have played in identifying some people and also facilitating the management of them.

Ms Wellington : Thank you for the opportunity to appear today. Safe Work Australia leads the development of national policy and strategies to improve work health and safety and workers compensation arrangements. It's also useful, usually at the outset, to set out what we don't do: we're not a regulator, so we don't enforce compliance with the model work health and safety laws. All the jurisdictions have their own regulators who do that, including some specialist regulators—the National Heavy Vehicle Regulator, for example, which definitely has an interest in fatigue.

I guess that segues into our interest in this inquiry, which is really in relation to risks to workers from fatigue, to the extent fatigue is caused by inadequate sleep. Our organisation is a tripartite body. We have 15 members, with representatives from all of the jurisdictions as well as two representatives from employer groups and two representatives from employee groups. One of our key functions is the model work health and safety laws. Through that tripartite process that we have, we've also produced a range of guidance materials and resources, including virtual seminars on the risks from fatigue in the workplace, and those resources are all freely available on our website.

Mr Weiss : The Department of Health doesn't have an opening statement. We'll save you a minute 55.

CHAIR: You can allocate it to someone else if you like. Pick a favourite!

Prof. Eastwood : I'm a research scientist and current president of the Australasian Sleep Association. Next to me is Maree Barnes, who is a sleep physician, immediate past president of the ASA and currently ASA's representative on the World Sleep Society governing council. The ASA is the peak scientific body in Australia representing clinicians, scientists and researchers in the broad area of sleep. I would like to acknowledge the very strong relationship we've developed with the Department of Health over the past couple of years.

The ASA's submission has several key recommendations related to development of a national sleep health promotion campaign, a national school education program on sleep health, the development of an education and training program for health professionals, and a targeted call for research. In support of our submission, we have already submitted a prebudget submission together with the sleep health foundations, which I believe the committee has, and that requests funding of a national community education campaign, and a national education program for health professionals.

With the chair's permission, I'd also like to table an exhibit which is an update to the NeuRA submission calling for targeted research funding. I've worked with Danny Eckert, who's also the chair of the ASA's research committee to provide some clarity on some of these items. If I'm allowed to do that, that would be appreciated. The ASA has also submitted a report of a research study, which was recently undertaken in Parliament House, of the sleep health quality of MPs, senators, staffers and journalists. I'm happy to talk about that later if you would like.

CHAIR: No, we don't need advice on that.

Prof. Eastwood : Finally, I know that there was a question taken on notice in Melbourne about the number of public sleep clinics and beds in Australia. We have some interim data. We put out a call to our members on Friday, after the inquiry secretary sent us the request. We have some interim numbers on that for both paediatric and adult sleep beds, which I can provide if the committee wants. We will provide a formal submission on 20 February as per the request.

CHAIR: Okay. We might come back to that if we have any questions. Thank you very much.

Prof. Bruck : The Sleep Health Foundation is represented here by two of us. David Hillman is a sleep physician and founder of the Sleep Health Foundation. I am an academic, researcher and sleep psychologist, and I'm currently chair of the foundation.

We're a not-for-profit body. Our mission is to improve people's lives through better sleep. We've rapidly developed a network of interactions with other health not-for-profit organisations—mental health and so forth—relevant industry related groups as well as with sleep disorder patient groups.

Over the last decade the foundation's work has included producing a number of reports. The most recent one I think you would be familiar with is the Asleep on the Job report. I think it's fair to say that this report in particular has probably been a significant impetus for getting this inquiry up, and we're very grateful for the inquiry of course. One of the things that this report notes is that four in 10 Australians regularly get inadequate sleep and, as you know, the costs in dollars are huge.

Late last year the Western Australian government released this report, Health and Wellbeing of Adults in Western Australia 2017, which with the chair's permission I'd like to table. One of the interesting things is that this also says very similar numbers, over a third of Australians, are regularly not getting enough sleep. This is also consistent with OECD prevalence estimates. So it's nice that it's always the same story, that there are a lot of people out there not getting enough sleep.

As Peter, from the Australasian Sleep Association, said we've partnered to put in a pre-budget submission. We're asking for about $18 million to run a sleep health community education campaign. We see ourselves as a group with relevant experience and a clear vision of what is needed to oversee such a sleep health campaign at the community, school and workplace level. We would seek to first deliver a really effective campaign that creates attitudinal and behavioural change, and we want to measure the campaign's success so we can tell the government—make it clear—what the economic cost gains have been of running the campaign.

CHAIR: Thank you very much. Next is Carers Australia.

Tammy Wolffs : Thank you for the opportunity to appear here today and to give evidence about the prevalence of sleep deprivation by carers and the effects that sleep has on their lives and the lives of their families. The ABS survey of disability and carers shows that nearly of all carers in Australia have interrupted sleep, but there is very little available research on the causes of carers' poor sleep or on the effects on their health and wellbeing. There has been little investment in supporting carers to get more sleep and measuring how their wellbeing can be improved.

Research has been undertaken in the UK, and was referenced in our submission, which identifies the leading causes for sleep deprivation in carers. Carers mostly could not sleep through the night either because of the needs of the person or people that they were caring for or because they anticipated or worried about those needs. Chronic sleep deprivation puts people at greater risk of a range of conditions including diabetes, heart disease, stroke, autoimmune conditions and mental health conditions. These conditions not only affect the sleep deprived carer but the person with care needs and other members of their family.

Carers Australia has recently commissioned research from the Sleep Health Foundation to review the literature on the extent, causes and consequences of sleep disruption. The resulting report is expected to identify and provide information to carers and make recommendations about the extent of carers' sleep loss and disruption; the factors that contribute to sleep disruption and the consequences; the physical, emotional and financial effects of sleep disruption; how to reduce sleep disruption and whether and how replacement care can be used to best effect.

The research will initially inform a set of fact sheets to help carers who suffer from chronic interrupted sleep and will provide evidence that can be used as a basis for making the case for carers to be given greater access to regular, subsidised overnight in-home and out-of-home replacement care services through the disability and aged-care systems and that's the primary thing that we're looking for. We would also like the literature review to be used as a basis for undertaking future primary research.

CHAIR: Thank you very much. Next is Sleep Disorders Australia.

Mrs Chadwick : I'm a director of Sleep Disorders Australia and a founder and director of Hypersomnolence Australia. I'd like to address three things very briefly. The first one was addressed by Ron Grunstein. I agree with everything that he said. I can testify that due to the lack of a sleep speciality in Australia it is felt greatly in the general public and within people with sleep disorders.

The second is the treatment and management of disorders of hypersomnolence. Narcolepsy and idiopathic hypersomnia cause significant impacts to those affected, reducing work capacity and quality of life. This results in significant cost to the Australian community, with both direct healthcare costs and indirect costs of loss of productivity. Narcolepsy and idiopathic hypersomnia are lifelong neurological disorders that require ongoing treatment and management. This is a cost that is not sustainable for most people through the private health system and without access to PBS listed medications, yet recent changes to the MBS for sleep studies have resulted in the shutdown of over 35 onsite sleep clinics across Australia, and we are seeing the shutdown of onsite sleep labs in public hospitals too. Access to affordable medications are also limited for many people.

The third issue I'd like to address is education and awareness of sleep disorders and also support for people who struggle to live with sleep disorders. Sleep Disorders Australia is the only organisation in Australia that represents all people affected by sleep disorders. We have been raising awareness, providing education and support, and advocating for the needs of people affected by sleep issues and sleep disorders for more than 35 years. However, all of our staff, including me, are volunteers. We do not receive any government funding or any support or funding from anywhere else. We have projects we would like to implement and support services that we would like to provide. However, without funding, we cannot do that to the degree that is needed but, more importantly, is expected of us. The consequences of that are widespread and need to be addressed.

CHAIR: Thank you very much. Last but not least, the Public Health Association.

Dr Bin : I'm here today on behalf of the Public Health Association. I work as a research fellow at the University of Sydney. With me I have Malcolm Baalman, who is a senior policy officer at the PHAA. In our submission we very much emphasise the role of sleep in prevention and in promoting lifelong health and wellbeing, and I just want to congratulate the ASA and the Sleep Health Foundation on all the excellent work that they've done towards this.

In making our submission, we were really trying to bring along the public health community to understand the importance of sleep. I think it's pretty clear from my experience preparing this submission that awareness of sleep, even in the public health community, is low and there's a long way to go in educating our fellow colleagues around sleep and sleep awareness and the importance of trying to integrate sleep into our existing health promotion and prevention programs that involve promoting nutrition, physical activity and similar lifestyle programs.

CHAIR: Thank you very much. I appreciate that. Thank you, everyone, for meeting the discipline test! Because we have about two hours to discuss what is a broad range of issues that have been raised this morning and to date in the inquiry, what I'm proposing to do is give a little bit of structure for the committee members. I'm proposing that we have a couple of themes, and maybe we can focus our questions sequentially on those themes. You can debate the themes I've developed, but, hopefully, we won't get stuck on that. But, also, if a particular line of questioning leads somewhere else, it's not too regimented and structured. Obviously, one of the themes is miscellaneous, which is anything that the themes don't pick up. The areas that I thought we could look at, in order, are: cost and accessibility; the medical workforce issues; the workplace environment, particularly the types of issues that Safe Work Australia covered; research; community education; what I'd broadly describe as medication and pharmaceuticals; lifestyle; and miscellaneous.

I might start the questioning. I will just say that, for the two organisations on the telephone, sometimes being sight unseen means that we don't automatically throw questions to you, so feel free to jump in if you feel like you've got something to contribute and we're neglecting you. I will start on costs and accessibility—firstly, with the department. I'm just wondering whether you're able to provide us an overview, and you might want to take on notice more detailed information of what MBS items are available for sleep health.

M r Weiss : If I can go into a bit of detail, there's currently a review of the—

CHAIR: What would be helpful is if you give a general overview and then take on notice to give us the detail.

M r Weiss : Yes, sure. I'll just set a bit of context. There is currently a review of the entire Medicare Benefits Schedule underway by an independent clinician-led group of reviewers. They have reviewed the items on the MBS in relation to the sleep studies, and changes to those items took effect from 1 November last year. To summarise them, there are items there for sleep studies occurring in either the home setting or a laboratory setting, and they're a combination of initial diagnosis and follow-up tests. Those are, broadly, the key MBS items for sleep studies. There are other items considered to be part of the same review around respiratory function tests that are also relevant.

CHAIR: We heard from Sleep Disorders that the changes in the MBS have resulted in 35 sleep clinics closing their doors. Is that something the department is monitoring? Do you have a view about that?

Mr Weiss : I knew there had been some closures. I think they have predominantly been closures of sites that were doing the laboratory based testing. One of the recommendations out of the review was to tilt the testing back towards a home based setting, and that's taken effect, as I said, from 1 November. Really the items themselves are written in a way that clinical need is the primary determinant of whether a sleep study occurs in the home or in a laboratory based setting. The key thing through all of the item documentation and the various explanatory notes is that if it is determined that a test should occur in a laboratory setting, then the reasons for that need to be documented.

CHAIR: Generally, and with potential applicability to sleep health, is there federal support for people purchasing medical devices?

Mr Weiss : Not that I'm aware of, but that's not really in my area, so I'd probably need to take on notice to give you a full response.

CHAIR: This goes particularly to whether there are analogous programs of support in other health areas for things like CPAP machines.

Mr Weiss : I don't know. I'd need to take that on notice for you.

CHAIR: I might just ask generally whether any of the other people here today have a view about the MBS schedule and its adequacy.

Dr Barnes : I sat on the TMCC that reviewed the sleep study item numbers. In regard to closure of the in-laboratory sleep testing, we wrote the item numbers, or gave advice to write the item numbers, to ensure that best practice was met. And there's quite a long list of exclusions to the requirement that sleep studies be done at home, and we felt that that covered all of the clinical situations in which a sleep study would be required to be done in a laboratory. Prior to that, there was absolutely no need to justify a physician's decision as to the location of a sleep study. In addition to that, the requirement was added in that you could do a diagnostic sleep study only once every 12 months, and there were separate item numbers written for the other circumstances in which the previous item number for diagnostic sleep studies were used—namely, commencing CPAP titration and checking the effectiveness of a particular treatment. So, there are separate item numbers written for all of those things. In fact, the ASA was pretty happy, really, with the way the item numbers came out.

CHAIR: Why would 35 centres close as a result of those changes?

Dr Barnes : I can only suspect that it was because those centres were reliant on patients having in-laboratory sleep studies. And, as you said, the number of in-laboratory sleep studies is going to decline. It must decline, because now you need to provide justification for the requirement that it should be done in a laboratory, whereas many patients in fact could have had their sleep studies done at home. But if those laboratories did not offer home sleep services, then their numbers would decline. In addition to that, the ASA, led by Garun Hamilton, put in an expedited MSAC review to get a specific item number for vigilance testing, which was a considerable concern. Vigilance testing is required to be done, for example, for the diagnosis of narcolepsy.

It was a concern that with these new rules coming into place we'd not be able to adequately manage our patients with possible narcolepsy. Previously, to diagnose narcolepsy you had to have a sleep study the night before followed by vigilance testing during the following day, and the same item number for a diagnostic sleep study was used for the night-before study. Now there is a specific item number for vigilance testing, both in adults and children, and so we feel that's covered the diagnosis and assessment of narcolepsy and other disorders of hypersomnolence. It will be interesting to see the results of the audit that come through. I understand there's going to be one done in May of this year and another in 18 months time to look at the impact of the changes in the item numbers to the way we do our sleep testing.

CHAIR: Can I draw the conclusion from what you've said—particularly in relation to those 35 centres—that there were places that were effectively directing people towards lab testing that wasn't necessarily required?

Dr Barnes : I don't know. I can't comment on that, because I don't know which of the centres have closed.

CHAIR: Can I ask whether there's a view around the table that there are medical procedures that aren't on the MBS list that are therefore resulting in patients having undue burdens and that could be included?

Prof. Hillman : One of the issues—what we've heard in the last five minutes is really about an improved regulatory environment around sleep studies. What we need to think about is improving access to them. You've heard a lot, particularly with paediatric sleep studies, about the scandalously long waits. I think there's a case for simpler sleep studies that have not been considered in Australia. They have been considered, but rejected—the so-called level 3 and 4 sleep studies have a limited number of parameters measured but are measured in the home. They are very suitable as part of screening procedures but also for diagnosis of simple cases.

At their simplest—and I think you've had a submission around oximetry from The Thoracic Society of Australia and New Zealand—they are simple ways of adding to clinical information obtained by interview or questionnaire. They are simple tests that sometimes are enough—in the obvious cases, certainly—to make a diagnosis, and certainly to improve the integrity of the screening procedures. So I think it's time to plan level 3 and 4 sleep studies in Australia. They're part of the investigative regimen in the US, for example, and they have been for many years under their Medicare system.

CHAIR: One last question from me at this stage, to the department: the medication Xyrem, for narcolepsy—are you able to take on notice, if you don't know, whether there has been any consideration of that by the Pharmaceutical Benefits Advisory Committee?

Dr Cook : I can answer that, in a way. That particular medicine isn't on the Australian Register of Therapeutic Goods, so—

CHAIR: So it hasn't been through a TGA approval yet?

Dr Cook : Yes, it hasn't been through TGA approval yet. You need to be on the ARTG before you can apply to the PBAC. Obviously, we can't compel someone to make a submission to the TGA. That draft—

CHAIR: So there's not a submission under consideration?

Dr Cook : I can neither confirm nor deny that, I'm afraid!

CHAIR: Who's the manufacturer, as a matter of interest?

Prof. Hamilton : Can I add to that? I was involved with the manufacturer about putting a submission in on the grounds of narcolepsy being an orphan disease—a rarer disease. The application was rejected. The feedback that was given to me was largely on the grounds that the other medications that are listed for narcolepsy went through with it not being orphan disease, and therefore the argument that it's an orphan disease to get Xyrem onto the register didn't seem to hold weight. Further evidence was requested around comparative studies that, unfortunately, will never be done and so leave the manufacturer in a bind. So at the moment we don't have access to Xyrem—

CHAIR: Who is the manufacturer?

Prof. Hamilton : UCB. They distribute in Australia on behalf of Jazz Pharmaceuticals, I think.

CHAIR: Is there anything else that we need?

Dr Cook : Just as noted, that that medicine is available through our special access scheme. So people do have access to it, but it isn't funded.

Prof. Hamilton : And it's prohibitively expensive.

CHAIR: How much is the annual cost?

Prof. Hamilton : Between $10,000 and $15,000 per year, on average.

Prof. Eastwood : A more general comment about the MBS item numbers is that they can be difficult to interpret at times, because you've got both the item number explanation and its explanatory notes. We've been working extremely effectively with the Department of Health—specifically, Mary Warner; and Ryan Fernando—to get clarification on item numbers, which we've been feeding back to our membership. I think it's an example of a professional association and the Department of Health working well together to avoid problems in the future that we have had in the past. Indeed, tomorrow morning we are meeting with Julie Quinlivan, who is the director of the Professional Services Review, to further establish that relationship. There have been some good things coming out of this, and we're very pleased with that aspect of it.

Prof. Grunstein : I want to add to what Peter said, because I think the Professional Services Review does have a role in this, in the sense that we can all talk about quantity of testing but we have to ensure that there's quality as well. That has been one of the big issues identified by the Professional Services Review committee. I think it is more complex. I think the other area that we've lost is the ability to investigate complex patients by asking the Department of Health for permission to do extra studies in a particular calendar year. We used to be able to do that. We can't do that now. Although it may only apply to very few patients, these patients are complicated, and we've lost the ability to care for them.

CHAIR: Does the department have any response to that?

Mr Weiss : I'm not familiar enough with the details.

Mr Ryan : I believe he's referring to changes to the Medicare Claims Review Panel, which was a panel that has been dissolved. All of the items that previously went through that particular process, which was an application process by the clinician who would apply to this particular panel for approval for additional services to be funded. That particular panel has now been ceased, with a view to trying to provide coverage through the general MBS items. Obviously, something that we will be doing with these particular changes to the sleep items is reviewing them very closely with the profession in May and then at the 18 month interval to identify any particular issues or shortfall in changes to those particular services. Changes to the Medicare Claims Review Panel process will be part of that particular review.

CHAIR: Thank you.

Mr GEORGANAS: My question is for Sleep Disorders Australia. In your statement, you mentioned the unaffordability of certain medications. They would be medications that are under the current lists or ones that are outside of the scope, including any devices. What effect does that have on a person who can't afford the medication?

Mrs Chadwick : It has a great effect on their whole family. As has been said, oxybate can be anywhere between $15,000 to $20,000 depending on the dose. That's obviously out of reach for most people with narcolepsy. Modafinil can't be accessed by everybody either; you need a diagnosis of narcolepsy. That's out of reach of people with sleep apnoea, shiftwork disorder or other medical conditions that cause hypersomnolence or excessive daytime sleepiness. Modafinil isn't on the PBS for everybody; you need to have a diagnosis of narcolepsy. The impact is enormous. There are a lot of people that could benefit from medications like modafinil, but they just can't afford it, because modafinil is expensive.

Mr GEORGANAS: In terms of other medications or devices that are available through the PBS system, are there any unaffordability issues through gaps, extra payments or people just not being able to access certain medications?

Mrs Chadwick : With regard to Modafinil, there really shouldn't be any reason why it's not on the PBS for disorders like sleep apnoea and shiftwork disorder. I don't have an answer as to why it's not; it just should be. As I say, it has a huge impact on the lives of people that suffer from it. It stops people from being able to work and lead a productive life. It's a simple medication. There's no reason why it's not on the PBS. Also, when talking about sleep apnoea, CPAP machines aren't cheap either. Although some health funds do have rebates to cover part of the cost, most don't cover a lot of it. Some health funds will cover accessories like masks, hoses and things like that, but there are a lot of health funds that don't cover much of that either. If you don't have a private health fund, then that's it. There's no public funding at all. There are some individual state programs, but, basically, you're on your own if you have sleep apnoea.

CHAIR: Does the ASA have data or an understanding of the different state schemes to support people purchasing CPAP machines? The evidence we got today is that it does vary state-by-state through the public system.

Prof. Hamilton : I can give some information about that.

CHAIR: I'm happy for you to take it on notice if that's easier.

Prof. Hamilton : We can provide a more detailed answer on notice and get back to you.

CHAIR: Thank you very much.

Prof. Hillman : Can I make a couple of comments about what has just been said. Sleep is a recent internal medicaine specialty and has had a lot of difficulty. It's a relatively recent internal medical specialty and there is a lot of difficulty getting the sort of attention to the area that is needed—for example, in the case of modafinil, some years ago we went to the PBS to get it as a first-line medication for treatment of hypersomnolence disorders. We were told, on cost effectiveness grounds, no—that amphetamines were cheap and cheerful, and that's your first line. Amphetamines are a problematic drug. For my own family, my choice would be modafinil before amphetamines. That's one example of the sort of difficulty we've had. With CPAP prescription and CPAP provision, federally the response some years ago, when we made submissions around that—we were told that, under the Medicare system, provision was made to the states for appliances: walking sticks, walking frames and that sort of thing, and that's where CPAP sat. We've never really moved on from there—that is, that it's a state-by-state responsibility. Federally, there's no responsibility taken for provision of appliances, and I think it shows.

CHAIR: Except in the hearing sector. You do income support through the hearing sector.

Dr FREELANDER: I have a number of questions. First of all, I'd like to ask Professor Grunstein where he sees the problems with access to care in adult sleep medicine.

Prof. Grunstein : I think the problems are at different levels. I certainly would agree that we need to upskill general practice and other people in allied health or other non-medical practitioners, but I don't believe it can be easily done until we have a skilled enough specialist workforce. That was the point of my comments: without sleep medicine being recognised as an independent specialty, we don't have the training and we don't have the skill sets that would be needed to care for the diverse patients and also to be hub centres for GPs to refer their difficult cases and to educate those GPs.

Dr FREELANDER: But there are major distortions and discrepancies in access to care—certainly with adult sleep medicine, but more so in the paediatric age group—would you agree with that?

Prof. Grunstein : If you mean by distortions and care in terms of availability of resources from areas that are higher socio-economic versus lower socio-economic, I'd agree with you. I think the other problem is a recognition that sleep disorders, per se, are related to socio-economic status. The poorer you are, the more likely you are to have sleep problems. I don't disagree with what you're saying. My concern is that, in terms of fixing this maldistribution, we also need to make sure that we have the skills and that those skills are also in the right parts of Australia.

Dr FREELANDER: I'll ask the Department of Health: do you agree that there are difficulties in access to care or not? It's a simple question.

Mr Weiss : I'm not sure there's a simple answer. I'm not sure that we've got good enough information on prevalence to know whether there's a shortfall in access or not. Anecdotally there probably is, but I'm not sure the evidence is clear enough to form a definitive conclusion.

Dr FREELANDER: I'll ask the Australasian Sleep Association and the Sleep Health Foundation whether they see that there are difficulties in accessing care.

Dr Barnes : 'Yes,' is the short answer. I work in a relatively inner city public hospital and even in my relatively well serviced area there is a waiting time. To get a sleep study you've got to see me first. The waiting time for that is anything between six months and two years and then you might wait another 12 months to get a diagnostic sleep study. Then you wait another 12 months to get your CPAP titration study. That's terrible, but it's even worse in country areas. It's worse in rural and remote areas. It's incrementally worse again if you happen to be under the age of 16 or 18, depending on the centre, because paediatric waiting lists are at least twice that. There are significant barriers to care.

One of those barriers to care, as I said, is accessing me or other sleep physicians. One of the reasons we really want to see an upskilling of the primary care workforce is so that some of that load can be taken away from us. Part of the new Medicare item numbers was an expedited access for GPs to refer directly for sleep studies to look at patients who had a significant chance of having moderate to severe obstructive sleep apnoea, which was great, except that in order to access that pathway GPs had to provide the results of two questionnaires which meant (a) they had to recognise the patient had this risk of moderate to severe obstructive sleep apnoea, and (b) they had to be familiar with the questionnaires. We know, as you've heard, that GPs get about two hours of sleep training in their medical training. It's just totally inadequate. That pathway, although it looked good when we were writing the item numbers, is really not been utilised. We had a meeting with the president of the college of GPs and he was unaware of any education that was being provided to GPs to enable them to access that expedited route, so I think there are significant issues around access to care.

Dr FREELANDER: Would anyone around the table like to comment on paediatric access to sleep medicine?

Prof. Hillman : I think it's a matter of serious concern. You've had submissions that have referred to a wait of up to two years. The thing that concerns me when I hear that sort of statistic is the fact that there's also been some very good studies to demonstrate the learning and other difficulties children have with untreated sleep disorders. Also, rather alarmingly, once these disorders are treated, some evidence suggests that intellectual development has been affected so that they never quite catch up, so the longer the delay the more that phenomenon exists. The thought of a child with a fairly obvious sleep disorder waiting for some time for investigation of a mind treatment is a matter of serious concern.

Can I also make the point that when we look at these problems we worry about the health aspects of it, but there's also an economic aspect. We just completed a cost effectiveness study of CPAP for adults that takes into account the adherence rates of 58 per cent over five years—these are very conservative estimates—and that demonstrates that the annual cost of treating this disorder is about $550. That's the net health cost. If you take into account societal cost—that's costs to productivity, non-medical accident costs and a few other things—it's actually a negative number. It's what's called a dominant effect. It actually saves the country $440 per person treated, so in actual fact it's economically stupid not to look for this disorder in a responsible, cost-effective way and deal with it. At the moment we're talking about a lot of barriers to getting there. We want to bring those barriers down in a responsible way. But the end result will be a healthier community. This is a grossly underdiagnosed condition out there—about 25 per cent of cases are diagnosed across the nation—but it's also an economically responsible thing for our nation to do.

Dr FREELANDER: Thank you.

Prof. Eastwood : I might be able to help provide some interim numbers around the paediatric and adult hospital beds. As I say, this is interim data, but across Australia we had feedback from 51 hospitals and medical clinics, of which 10 were paediatric. If you put it in terms of beds, there are 223 public sleep beds in Australia, of which 33 are paediatric—a relatively small proportion—and those beds operate for between one and seven nights per week, but, on average, about five nights a week. So that gives you some context as to where we're operating with paediatric versus adult and the number of beds. But, as I say, the ASA will provide the committee a final number by Wednesday, 20 February.

Prof. Hamilton : It's just worth adding that paediatrics cannot access home sleep testing, unlike adults. So that's it. What we describe with a sleep lab, that's all they can have.

Dr FREELANDER: Yes.

Mrs Moore : Can I add some things about paediatrics? The statistics I like to quote are that 25 to 40 per cent of four- to 10-year-olds have sleep problems. There was a longitudinal study done by Karen Bonuck in 2012 that indicates that sleep problems that aren't treated before the age of five end up as behavioural difficulties at seven. There's another study by her group that indicates that untreated sleep-disordered breathing or suboptimal sleep hours result in much higher odds of kids in their later school ages becoming obese. And I think there is a longitudinal study in Australia as well that indicated that kids who aren't self-regulating their sleep by five—that is developmentally detrimental over time. So I think that there's a real sense of urgency about treating our preschool kids—a real sense of urgency. I come from an allied health background, so I think that there's a big role that allied health can play, particularly in screening, and triaging in screening, to relieve the burden on the medical fraternity at this point in time, and I can't see any reason to delay that.

Mr Buckham : If I could build on that, coming from an allied health area, with pharmacy, something that was mentioned earlier was the level III home-based sleep studies. That's the basis for the sleep studies that are done through the pharmacy programs. They are validated, they're approved and they're an excellent way—appropriate to scope of practice—for pharmacists to be able to pick up on people who can be managed or need to be referred on to more specialist assessment. And speaking to the cost issue outside of public funding, this is certainly something that these pharmacists are seeing, talking to people through these services. Even with the machines that are available through the pharmacies, with all their support and ongoing management and support for adherence, people are trying to buy products online, and all sorts of machines are coming in where there's no ability to tailor them to the individual. There are concerns about whether they're effective or not. There's no-one able to validate the data and review and monitor that. So there's a real concern with the machines that people are seeking because they are perceived as a cost advantage.

Dr FREELANDER: Thank you. My last question is to the Department of Health. Does the Department of Health have a plan for sleep medicine, looking forward?

CHAIR: Sleep health or sleep medicine?

Dr FREELANDER: Sleep health.

M r Weiss : I think we're missing some people here from the department, from our population health and sport area, but, as far as I'm aware, it's not been an area that's been specifically focused on within the department, so there's not a sleep plan or a sleep health plan being developed, as far as I'm aware.

Dr FREELANDER: Thanks very much.

CHAIR: Just before I moved to Mr Zappia, can I just ask, and I'm sorry to add to the burden: does the ASA, or anyone else for that matter, have any data on waiting lists and waiting times? Obviously, as we've spoken to individual practitioners and individual hospitals, we've heard what the circumstances are in their own hospitals, but is there any national data about that?

Dr Barnes : No.

Prof. Eastwood : We don't have that, but what's come out of this inquiry is that someone needs to be collecting all this data. The health department gets a bit of it; we get a bit of it. So I think that we've taken the lead here and we will be collating as much of that information as possible, from both public and private, so we can feed back that information.

CHAIR: To clarify with the department the question on notice I left you with in relation to medical devices and where the federal government does support medical devices: I can keep thinking of examples. Obviously hearing is one; there is direct financial support for hearing devices. Diabetes in some circumstances is obviously a growing area in that regard. So I'm really interested in a reasonably comprehensive list of any programs the Commonwealth supports that effectively support the cost of medical devices. Thank you.

Mr Weiss : Okay.

Dr FREELANDER: Are we going through the different subjects as we go on?

CHAIR: Yes. The next one after this is the health workforce. Mr Zappia.

Mr ZAPPIA: My question is to whoever wants to comment on it and follows the line of questioning by others. That is in respect to access to care. It seems to me from my experience on this committee that, whichever health condition we look at, there's always a call for more action, more response from government and more funding. Would it be fair to say that, with respect to sleep disorders, the disadvantage and the access to care is much worse than it would be for most mainstream health conditions?

Prof. Hillman : I think it's a little bit of an orphan specialty. It's the newest kid on the block and, of course, it has to move against great historical funding models. You try to get a bit of movement on cataract surgery, for example, to make a bit of room for other things and you get great push-back. So here we are, trying to make a place for sleep disorders in an already crowded marketplace as you point out. So, yes, I think we have very significant difficulties getting access to the diagnostic tools we want and very significant difficulties getting our patients the treatment they require. You've heard some more about that this morning. So, yes, we're trying to make our place. I think this inquiry is a very important waypoint in that journey. You can be very helpful and creative here and help us all get on top of this big national problem.

Prof. Bruck : I will also bring up the topic which is the biggest sleep disorder of all and hasn't even been mentioned yet, and that is chronic insomnia and the barriers to treatment. We heard from Rosemary about the problems with benzodiazepines, and the fact is that over the last couple of decades there have been very good, excellent behavioural and cognitive treatments for insomnia. The problem for the patient with chronic insomnia is getting access to that and the problem for the GP is knowing where to send them and what's going to work.

There's a real role for allied health professionals here such as psychologists who are specially trained. Only some psychologists are trained to deal with sleep problems. I believe there was somebody in the inquiry who gave the impression that all psychologists can deal with sleep problems. That's, unfortunately, not true. There are now some—increasingly with the aid of ASA online programs—who are skilling themselves up for these CBT for insomnia treatments, but it's a very small percentage. But there's no reason—and it's been shown internationally—why you can't train up nurses, for example, to deliver cognitive behavioural treatment for insomnia. So it's not something that needs to be corralled for a particular profession or group. What we need is for GPs to be aware of these treatments of where they can go, and we need to have massive upskilling of nurses, psychologists and other allied health professional so that they can deliver these sometimes very simple sessions: two one-hour sessions, three one-hour sessions, and what could have been 20 years of chronic insomnia is suddenly much better. I deal with it all the time. It's amazing how quickly some of these things change.

Mr ZAPPIA: Thank you.

CHAIR: That's a very good segue into our next theme which is health workforce issues. I will ask what are, hopefully, relatively quick questions. First is a factual one. With regard to sleep physicians or sleep specialists—I'm not quite sure whether there is a set definition of what that term involves—do we have an idea of the size of the workforce in Australia? How many sleep specialists are there in Australia?

Dr Barnes : Four hundred and seventy.

CHAIR: Not 471?

Dr Barnes : Definitely not—not 469 either!

Prof. Eastwood : I will say that, of that 470, the majority are both respiratory and sleep. Some are doing predominantly respiratory and some are doing predominantly sleep.

CHAIR: Yes. The second question I have asked before but haven't really got my head around. Obviously, a common complaint is the adequacy of sleep health in undergraduate curricula. Is there a simple way of changing that? It seems to be that it's a university-by-university issue, but, if we were crafting a recommendation in relation to that issue, what is our ask?

Dr Barnes : It's very difficult to get the universities to change their curricula. However, to be a practicing GP, for example, you have to sit the fellowship exam for the College of GPs. A way to get people to learn more in a particular area is to get some exam questions. Questions can be submitted to the College of GPs and they may be on the exam. Once the questions are on the exam, people will learn. Similarly, to be a physician, every physician has to sit the College of Physicians exams. Again, there are very few questions on the College of Physicians exams, but fellows of the college are able to submit exam questions, so that would be one way of doing it. I don't know if the federal government has any way of pressuring universities to put more sleep in the curriculum, but, if you can, that would be great.

CHAIR: My final question is: in some of the questions we've received from people we're going to hear from later this morning a comment was made that, in relation to narcolepsy, unusually, in Australia people tend to be referred to sleep physicians rather than neurologists. Does anyone have any comment on that and why that's a problem?

Prof. Grunstein : I guess the point would be that sleep physicians have the training and the means to investigate people with narcolepsy. I have to say that, in Australia, there has been not a lot of interest from the neurology community in developing sleep as one of its key subspecialties. That may be changing, but that's the reality, and it's been like that for the past 40 years.

CHAIR: Dr Freelander.

Dr FREELANDER: To Professor Grunstein: do you have a model of where the training should be in terms of respiratory physicians and also general practitioners and sleep physicians?

Prof. Grunstein : To be honest, I've focused on trying to develop better models of specialist training, and the reality is that we've set up a model of multidisciplinary care where we have neurology, psychiatry, sleep physicians, psychologists and multiple specialties involved in the training, but, at the moment, we have one trainee. The funding is not available, because all funding positions are largely based in hospitals. So it's difficult to achieve. We're trying, but I think that immersion model across different specialties would be important. I would support the ASA's initiative in general practice and other specialties, but I just think that we need to get our own specialist act together a lot better.

Dr FREELANDER: Is your trainee part of the respiratory stream, or is it totally separate?

Prof. Grunstein : We have a trainee in neurology who's through the neurology stream. Another one's through the respiratory stream. It is very difficult to have someone just in the sleep medicine stream, because there are no positions for sleep medicine. They are under control of either respiratory training through the Thoracic Society or neurology training through the Australian and New Zealand Association of Neurologists. The ASA don't really have control over any sleep medicine specialty positions.

Prof. Hillman : Thanks. Further to that, on the medical board you're registered as a respiratory and sleep physician. There is no registration as a sleep physician.

Dr FREELANDER: That would partly be led by the College of Physicians, would it not?

Prof. Hamilton : From the training point of view, yes, but that has to marry up with, as Ron was just pointing out, what happens on the ground within the hospital environments. Because the training largely takes place within public hospitals, which deal with a lot of inpatient work—and sleep being a predominantly outpatient specialty—it has a lot of trouble getting access to resources. So the funding for sleep specific positions is difficult. For example, like Ron, in my own institution we have two accredited trainee posts from the College of Physicians; the hospital only funds one of those. We have another one which, unless it can be funded by the person themselves, just goes fallow.

Dr FREELANDER: Is that right?

Prof. Hamilton : That's correct.

Dr FREELANDER: It just doesn't get filled?

Prof. Hamilton : Correct. Last year we had an unfilled college accredited position. This year, because the person has access to their own funding, that is filled. But that is not guaranteed year to year.

Dr FREELANDER: Okay.

Prof. Grunstein : Our position is funded half by the National Health and Medical Research Council as part of a centre of excellence and the rest is donated by the other physicians in our practice.

Dr FREELANDER: Okay. So they actually fund the other physicians?

Prof. Grunstein : Yes. We need someone to help with the research. So there is some—but they're also getting training along the way. But nothing is funded through the normal mechanisms.

Prof. Hamilton : That's right. We really struggle accessing the standard training position funding, which is from the public hospitals.

Dr FREELANDER: And that feeds back—am I correct—in medical student training as well?

Prof. Hamilton : That's correct. That will mean again, limited access to the students if they're not getting access to enough sleep medicine through their training.

Prof. Grunstein : I think it would go a long way if this committee would write to the deans of medicine in Australia, who meet regularly, and say they need to increase the amount of sleep health in their teaching programs.

Dr FREELANDER: Would the Sleep Association like to say something? Do they have a plan on training?

Prof. Eastwood : This is something very close to our heart. The ASA sees itself as the national not-for-profit broker of evidence based education for sleep health professionals. In fact, that's what we have in our prebudget submission, a proposal to educate nurses, pharmacists, dentists, psychologists and general practitioners by the ASA—being the hub of the evidence base—and then we work with different organisations. I've been really impressed by some of the submissions from groups like Reconnexion, the benzodiazepines submission, parenting research, the carers' centre, about this problem they've got with sleep.but they need to have access to evidence based information, which we can provide. What we have proposed in the prebudget submission is a three-to four-year program, working with all these other groups to come together and develop a predominantly online training program for each of these groups, which they can access for free and thereby upskill themselves.

We haven't got anything like that in Australia. I think that the universities are a hard nut to crack. We have one week of sleep training in the University of Western Australia's MD program. That's probably the most of anywhere in Australia. And that was just a chance occurrence because the university was revising the whole program. We have two postgraduate programs for training for sleep scientists at UWA and we have a UWA-based postgraduate program for training of sleep dentists. We have worked with the Australian Psychological Society to develop an online education program. We have worked with the Australian Pharmaceutical Society to upskill them. So we have this track record of working with different departments, different institutions, different groups, to develop these programs. I think such programs need to be centralised and what we're proposing is that the ASA will be the central process to help facilitate that. We don't want to own everything; we want to work with people, but we need to provide an evidence base for such programs. We are in this world now where, every time you go online, you see a new treatment for 'sleep this' and 'sleep that'. So there does need to be a degree of gatekeeping around that. That's what we see ourselves as being.

Dr FREELANDER: Thank you.

Prof. Hamilton : Can I just add one extra thing about the training, about what Ron and I were saying. If there's a mechanism to expand the training capacity and the funding for that training outside of the hospital or clinic environment to within ambulatory sleep medicine clinics, then you have the dual ability to both increase access to services but also increase access to specialist training, where it's actually being delivered.

Mrs Moore : Dr Freelander and Dr Eastwood, could I also add that I think the training could be really well placed in allied health as well, because you've got a really large workforce there, and every day they're face to face with kids and families. So they're in a fantastic position to see what's going on. Really, when sleep problems are untreated, it impacts executive function—that's problem solving, reasoning and emotional regulation—and I can't even can see how a lot of allied health therapies are effective unless we address the sleep. Right now it's kind of an untethered problem. So I'd really love to see more allied health people on that list for education.

Dr Barnes : Can I just add one more thing?

CHAIR: Briefly.

Dr Barnes : Three or four years ago we did a lot of work with the College of Physicians and AHPRA trying to get a sleep physician category up and we were told that, yes, it would be possible but it's going to cost us about $2 million, and we didn't have the $2 million so we didn't pursue it.

CHAIR: Mr Zappia.

Mr ZAPPIA: Thank you. Professor Hillman, earlier on you referred to sleep disorders as the new kid on the block or words to that effect, which I agree with. Would anyone like to comment on whether any other comparable country is actually doing better than us in terms of the training and professional development of people when it comes to sleep disorders?

Prof. Hillman : The United States, interestingly, don't often show leadership in these sorts of areas, but they have a more completely evolved specialty of sleep medicine—they have their sleep medicine boards; they recruit from all sorts of specialties, but it's unashamedly sleep. So Australia sits alongside a lot of European nations—France, Germany, Finland, Holland—we're all at various stages in the evolution of this specialty, which I think needs some extra impetus now. Professor Grunstein in his opening remarks called for an independent sleep specialty. We're part-way there and we just need a little bit more impetus to get us into that area so that sleep can receive its separate advocacy and its special concentration that the problem needs, for health reasons but also for economic ones.

Prof. Grunstein : The one area where we're leading the world is in the dominance of respiratory medicine as the pathway to work in sleep medicine. I don't think there's any other country in the world that has such a lopsided arrangement. For a lot of European countries—as you heard, the United States—it is something that people come from a whole lot of different pathways. So that's the difference.

CHAIR: Okay.

Prof. Bruck : In the UK they've really led the world with showing behavioural training for nurses and delivering that and doing evaluations of training up nurses to deliver treatments for insomnia and evaluating that to be excellent and then trying to roll that out. So they've led the world on that.

Mr ZAPPIA: Thank you.

CHAIR: The next thing that we had related to the workplace environment generally. Mr Georganas.

Mr GEORGANAS: Yes. Thanks. Obviously my question is for Safe Work Australia and anyone else who feels that they could add to it. You spoke about model work and safety laws that we have in this country. Are there specific laws around sleep in particular industries? I know we do have in transport and others, but, in your experience in monitoring these laws, how rigid and strict are we with laws that apply to sleep on the workplace in terms of breaks per shift et cetera? I'll just give you a very quick example: nurses in South Australia were finishing shifts at 11 pm at night and were expected to be on their next shift in the morning at 7 am.

Ms Wellington : The short answer is a lot of laws would touch shifts, how they're regulated and how they're set. But, you're right, there are specialist health and safety regulators that do have specific legislation about fatigue, and heavy vehicles is one of those. I think I was seeing the rail safety regulator mention that they couldn't get agreement on what they were looking to do but we don't deal with that area. So the model work health and safety laws are the only laws that we look after and they haven't been implemented in Victoria and Western Australia. They've been implemented in all the other jurisdictions. They don't have specific regulations or requirements that deal with sleep or fatigue, but in terms of what we do have, they're outcomes based laws, so they're general principles and duties which basically require persons conducting a business or undertaking to assess hazards and assess risks and then to implement controls that are capable of addressing those risks—eliminating them if possible or minimising them if not.

One thing that we do is publish guidance material that is to assist PCBUs to understand how they can actually do that. We published a guide on managing the risks of fatigue back in 2013 which contains a number of checklists and a step-by-step guide. It addresses shiftwork, for example, and how you might design a roster system that is aimed at eliminating or minimising additional risks that shiftworkers face. We also look at the workforce survey that the ABS does. I'm not sure how regularly they do it, but we publish in relation to shiftworkers some analysis of injury rates in shiftwork compared to non-shiftwork, so we assist with some research provision as well or data analysis. We've also published three, I think, in the last couple of years, virtual seminars which is expert panels who get together to talk about practical things that employers can do to manage the risks of fatigue. But I will say that we look at fatigue from a very broad sense. It's not just fatigue to the extent that it might be caused by inadequate sleep; it's also other factors that might lead to fatigue.

We do have specialist guidance and products and materials that are targeted at research on shifts in particular and we have a duty in our laws that also requires employers to consult with their workers about work health and safety issues. That would include structuring of shifts and designing shifts because that's a particular focus area in this field. We don't work directly with employers on the ground; it's regulators who do that. They have a litany of materials on their websites and also other products that they might produce. Each jurisdiction has that available on their website publicly, so there's actually quite a lot of information out there for people. But going back to rostering, obviously there are Fair Work law issues around consultation on rostering as well. There'll be other laws that will touch on that, even if it's not just safety laws.

Mr GEORGANAS: Have you done any studies or reports—I know you've mentioned a few of them—of accidents or productivity hours lost directly through fatigue or sleep?

Ms Wellington : I'm not aware of us having published anything specifically on that. The main reports that I'm aware of in terms of statistics are to do with work related injuries from a shiftworker versus non-shiftworker perspective. One of the datasets that we do compile is the National dataset for compensation-based statistics, which is workers compensation claims made in Australia. But one of the difficulties we have is that it doesn't really provide a reliable indicator of injuries caused by sleep fatigue, and one of the reasons for that is the way it's categorised. There is a category for fatigue, but the number of claims in that category won't necessarily be a reliable indicator of the number of injuries where fatigue was a factor because of the way they categorise the cause of the injury. In most cases, sleep fatigue will be a contributing factor but the actual cause of the injury might be categorised in a different way—for example, if it was a vehicle collision or something like that that caused an injury or a fatality.

Mr GEORGANAS: So it could be a collision with a vehicle, but it won't be registered or highlighted that it could have been a shiftworker that had had three days of ongoing 12-hour shifts or something?

Ms Wellington : Not necessarily. It comes down to how it's categorised. From that perspective, even when claims are coded as 'fatigue', it could include also all types of fatigue, not just fatigue due to inadequate sleep. So that's another sort of difficulty. Yes, there is a matter of the cause being categorised as fatigue in the first instance and then also whether that fatigue was caused by inadequate sleep or another of the causes. Any data that we might be able to provide that was, for example, coded as a fatigue cause for an injury is probably going to provide a misleading picture, unfortunately.

Mr GEORGANAS: But the evidence obviously is, from what you're telling me, that shift workers are more likely to have safety issues at work through injury et cetera.

Ms Wellington : That's definitely what the data shows.

Mr GEORGANAS: Is anyone else aware of any studies that connect directly to sleep, for accidents et cetera?

Prof. Bruck : In the Asleep on the job report, they pull together a lot of the different evidence. On page 32, it says that workplace injuries attributable to insufficient sleep are 1.4 per cent of all workplace injuries and that 1.3 per cent of all motor vehicle accidents are attributable to insufficient sleep.

CHAIR: That actually seems quite low.

Prof. Bruck : Am I reading it correctly?

Prof. Hillman : Twenty per cent of fatal car accidents are sleepiness related, and the rate is higher on rural roads, not surprisingly. Interestingly, when you look at attribution of cause to accidents, if alcohol or speed are involved, those boxes get ticked, so buried within alcohol—the combination of alcohol and sleepiness is very potent indeed. As you've already heard, 17 hours awake is the equivalent to 0.05 in alcohol terms, and 24 hours awake is the equivalent to an alcohol level of one. These are additive effects. But, where alcohol is involved, because it easily measured, that's the cause. Sleepiness as an identifiable issue is big already, but I suspect it underestimates the real impact.

Mr Buckham : Related to that is the effects of medication impairment on driving as well. If the sleep condition is being managed with long-acting benzodiazepines, and that has an effect in the morning, when someone gets up to drive to work or wherever, that impairment can be present as a side effect of the management of the underlying condition.

CHAIR: Does the CRC have any views on this?

Mr Williams : I think it crosses over a little bit. We look at sleep disruption and sleep disorders. While some of these statistics are provided in the report that was just quoted, there is evidence to suggest a 50 per cent increased risk of injury, absenteeism or error safety violation in employees with a sleep disorder. We also find that up to 45 per cent of individuals in safety-sensitive occupations such as law enforcement and transportation are in this category, so there is a real increased risk through sleep disorders as well as the sleep disruption.

While I've got the floor, I will make the point that, when we look at the workplace, I'm hoping we are seeing—certainly as we develop new tools—new structural solutions around things like rostering and lighting. We are seeing an appetite, particularly in the high-risk safety-critical areas, for companies to take the initiative and try to integrate some of those solutions. But you've got to remember that it's very hard to separate the workplace from outside of the workplace and the opportunities for sleep loss and sleep disruption outside the workplace and try to marry those issues with the solutions provided by the employer. So we are looking at more individualised concepts that can be used in the home and outside the workplace to complement what can be done structurally.

Dr FREELANDER: It was very interesting to see the study that you conducted in Parliament House. One of my colleagues this morning asked me about his results. I'm interested in whether in my own industry, in health, there have been any studies about sleep and alertness in health, particularly with large numbers of people working shift work, particularly a lot of the nursing staff. They amaze me—working night shift and going home and running a family the next day and turning up again for night shift. It seems to me that there must be some sleep issues in industries like that that may affect judgement. Have there been any studies?

Prof. Hillman : In the US the joint commission published, I think in 2014, a report on that issue, and they summarised a lot of the data. I don't have it in front of me, but essentially one of the points that emerged was that in Australia, God bless us, we've got safe hours of work for our junior medical workforce, so it's not quite the issue that it still is in America, where you can have residents who work over a 28-day period, I think it was, more than four 24-hour shifts, and the medical error rate goes up multiple times—misjudgements. They referred to that as a specific issue, with a very substantial risk. Beyond the more general problems of a tired workforce are issues like lack of empathy. The medical profession is empathy driven, or ought to be, but sleepiness removes that as a human characteristic, unfortunately.

Prof. Eastwood : Dr Freelander, I think you've raised something really interesting, which is the nurse who works all night long and has to go home and function as an effective mum. We don't have any data on how workers function in their home environment, despite there being acceptance that there's a mutual responsibility for the worker to come to work ready to work and for the employer to get the worker to go home ready to function at home. That's something that I think we need to address in these kinds of discussions.

Prof. Grunstein : The other point is actually getting home. There are a number of papers on night-shift workers who crash their vehicles because of sleepiness on their way home. Doing some work for coroners cases I have also come across that in Australia. So, you've got to look at the whole dimension of risk as not just in the classic workplace but also on the commute home.

Prof. Hillman : On that whole dimension there, a lot of our conversation's been about how to regulate this area better, but complementing that we need education of the community generally around a greater sympathy for their own sleep needs and the sleep needs of others so that outside the workplace the opportunities given by enlightened rosters, for example, for sleep are taken. I think that's a missing issue that our pre-budget submission for a general awareness campaign is aimed at addressing—that we can do within the workplace what people choose to do outside it.

CHAIR: We've heard during this inquiry that there are some sectors, most probably and notably aviation and to some degree rail, that manage fatigue exceptionally well. Do you have a sense of who's at the bottom of the league? Are there particular areas of the economy that keep you awake at night?

Mr Williams : We do work particularly with transport and the mining sector at the moment, and that's where we're seeing the proactive approach, to a certain extent. We see a lot of complex issues and barriers. Health care is an area that we work in that typically has been a complex environment, and we've found it difficult to deploy some of these solutions, although we are having some success. Off the top of my head, I can't identify an industry that is particularly worse than another in terms of our contacts. Again, I think it's important to understand that there are some fairly novel solutions and a fairly active market in terms of sleep and health. I agree with David Hillman in terms of the important relationship between increased awareness raising in the community to drive some of these initiatives across the employer sectors as well. But I will take that on notice and see whether I can come up with some sectors that are performing below par, so to speak.

CHAIR: Thank you.

Ms Wellington : I would just reiterate the issues I was describing before about the data that we do collect and the ability to use it to draw conclusions in this area. It does have those deficiencies. More generally, it's more the job of regulators to collect incident data and monitor. We do collect workers compensation data, but there are limitations on that because obviously it's limited to people who made a workers compensation claim, and in some industries—transport might be a good example—they're not all employees or necessarily a majority of employees. In that field there might be a lot of self-employed people who wouldn't be making workers compensation claims.

The other thing I would just note is that the shift worker/non-shift worker report that I mentioned before does have some industry breakdown in it, but, interestingly, transport is one of the ones where it didn't really show much of a discrepancy between shift workers and non-shift workers in terms of injury rates. There are some industry differences that you can discern from that, but again, it's not necessarily going much to where we might see higher injury rates.

Mr GEORGANAS: In the breakdown, under transport for example, basically you group them all together, whether they're cab drivers, Uber drivers, courier drivers, train drivers or pilots?

Ms Wellington : I could probably provide you with a bit more information about how it's broken down. I can take that away. The classifications are set.

Mr GEORGANAS: Then you would be able to see where the regulated industries are with good regulations.

Ms Wellington : I would be cautious about saying what conclusions you would be able to draw from what the data tells you, partly because that is not my field of expertise. Equally, with this particular report, the shift worker reports, we're also using ABS survey data and producing our own report based on their data as well. We have to do some work with the data in those contexts. We can provide that.

CHAIR: Obviously in the trucking sector you have full-time workers that are potentially quite heavily regulated, but in other areas of the transport sector, taxi drivers and Uber being the classic cases, often they're second jobs. How can governments ensure that while taxi drivers, for example, might have set hours before they have a break, so limiting their shift times, how you can possibly guarantee that they're not actually coming from another job, so while they might have a regular shift in their taxi, it might be done off the back of working all day?

Ms Wellington : Not being a regulator, we can't really speak on how they apply the laws and enforce compliance in these fields. The way the model that we look after operates is that each person conducting a business can have a duty, as a person conducting or undertaking a business, it is their own business—the system is designed so that those people should consult with each other and talk to each other if they have the same duty. Again, how that's enforced in practice is really a matter for regulators. And yes, the National Heavy Vehicle Regulator would have their systems as well, and the specialist regulators. But also there are the state and territory regulators and Comcare as well, who do their own. Those questions about how they do it in practice and how they talk to people and manage multiple jobs et cetera would be better directed to them.

CHAIR: The next thing we have is research. I'm not sure whether anyone can answer this. What is the extent of research being conducted in Australia in relation to narcolepsy?

Prof. Eastwood : I'm not aware of any, to be honest.

Prof. Grunstein : The only study that I'm aware of is one which is funded by industry looking at a long-acting version of Xyrem compared to placebo. That is ongoing.

CHAIR: Should it be on your wish list?

Prof. Grunstein : Narcolepsy and the probably much more prevalent hypersomnia are an area where we have real weakness in research. That's an effect of both training—having the scientists and clinicians who can work in the area—as well as obviously the funding that would follow if you had people doing quality work in that area. We're a bit behind the eight ball, to be honest.

CHAIR: 'Zero' would tend to lead us to that view.

Dr FREELANDER: I have a question about research. There seems to be some research happening in Australia, but it seems to be quite fragmented. I'm not aware of any multicentred research trials in sleep medicine. You might be able to enlighten me.

Prof. Eastwood : It's interesting. Australia has historically hit well above its weight internationally in terms of research into sleep. I think it still does. There are several examples of existing collaborative research: for example, Ron Grunstein's CRE in Sydney; Doug McEvoy's CRE in Adelaide; Anthony Williams' CRC in Melbourne. All of those involve many people from all over Australia who are involved in those research projects. Then if you look at collaborative project grants from the NHMRC, which are getting less and less, they still usually involve researchers from across the country. Perhaps there is no better example than the constant requests that we get from pharmaceutical and device companies asking us to do multicentre clinical trials. In many cases, just about every sleep researcher in Australia is involved in those. So I would say that there is strong collaborative research already happening in Australia.

Dr Barnes : Unfortunately that can sometimes work against us when it comes to the NHMRC granting process, because many of us have to absent ourselves from the room because we have a conflict of interest with the grant being assessed.

Dr FREELANDER: Sure. We seem to be hearing from the Department of Health—correct me if I'm wrong—that we don't have a lot of epidemiological research about sleep disorders. Would that be correct?

Dr Bin : I think that is one of the points that the Epidemiological Association, who I represented, make. We make that point because a lot of the sleep research is driven by clinical sleep medicine and by clinical needs, which is very important. I think we have a lot more work to do on the sleep health side. How do we get sleep health into the community, where it's part of your everyday lifestyle and routine, and get that sleep health awareness up, rather than the clinical side of how we treat and manage sleep disorders? That's something that's not been done. So in terms of collaborative research, the collaborations need to be around population based approaches to sleep health, sleep awareness and sleep education. I think that's where the gap is.

Dr FREELANDER: We need both, but am I hearing from Mr Weiss that we don't have the statistics that we need?

Mr Weiss : I don't have a breakdown for you. I'm just going of some briefing notes that I have here. The briefing notes tell me that since 2000 there has been more than $85 million provided to the NHMRC for grants for research into sleep and sleep related conditions. Exactly what aspects of sleep those research grants have addressed I don't know, but perhaps I could take that on notice for you and give you a breakdown of that $85 million. So there is at least some research being done into those issues.

Dr FREELANDER: But Dr Bin, surely we should be doing more in the population health area?

Dr Bin : I think a lot of the sleep education research has been done in paediatric populations, but much less in adults. For the paediatric populations it is about how you implement and scale up these sleep education programs so that they reach all children, especially ones in disadvantaged communities. For adults I'm not aware of any such programs.

Prof. Eastwood : There are some outstanding epidemiological studies in Australia that have taken on more and more research—or example, the MAILES study and the Busselton Health Study and Raine study in Western Australia. All of those have strong questions about sleep in them. The 45 and Up Study in New South Wales, for example, involves 10 per cent of the New South Wales population. It is only recently that sleep has started entering this study as a question. We don't yet have much in the way of longitudinal data on sleep from these epidemiological studies. But I think it is gaining in importance. It'd be great to see sleep asked more in some of the administrative datasets coming out from the Department of Health. We're moving in that direction. I emphasise that epidemiology studies are just one part of a broader research program, which has to have discovery in it as well—and health services research. Over the last five years, NHMRC funding for sleep has dropped absolutely dramatically.

Dr FREELANDER: That point has been made to us quite strongly.

Dr Barnes : Five per cent of NHMRC grants go to respiratory and sleep. Of those, a third goes to asthma. A minuscule amount is then divided between all the other respiratory diseases and sleep, so it's not very much.

Prof. Eastwood : If I could add to that, one of the reasons for that is the challenges with the NHMRC process where we all have conflicts of interest because we do all collaborate together. NHMRC, while it has really transparent and exceptional processes, works against a smaller field like sleep. One thing we proposed in our prebudget submission through NeuRA is a targeted chunk of money. Use NHMRC and their fantastic processes, but inject some money in there specifically for sleep so that sleep is no longer competing against cancer and dementia. Because we don't have the expertise in the room, everyone's out of it. It's an option. Where that money could come from, I have no idea. MRFF is an interesting option but they may not be the appropriate one. I know Mr Zimmerman and all of us have spoken about the need to perhaps have better consortia-type activities. We're happy to be guided on what the right process is, but it doesn't take away from the fact that the field does need an injection of funding into sleep research somehow. Perhaps NHMRC and MRFF is a way to do that.

Dr FREELANDER: It sort of goes back also to Professor Grunstein's point that sleep needs to be seen as separate from respiratory medicine.

Prof. Eastwood : Exactly.

Mr Williams : Sorry to interrupt—I wouldn't mind making the point that there has been a push recently to improve the capacity of researchers to commercialise and innovate. I don't think the sleep research community has responded extremely well to that. I think it was Peter Eastwood's comment that the sleep research community in Australia has always performed well. I can attest to that just through the huge industry support we've had not only through the CRC but through other programs. That opportunity needs to be fostered further, but I can say that we have strong industry support in Australia both through the small and medium enterprises and through some of our international partners. We have been focused on building industry-ready PhD graduates and those sorts of things. I think the community has responded well to that push and that opportunity and can't be left behind, notwithstanding the importance of population health studies et cetera.

Prof. Hillman : It's interesting to note that, despite sleeps difficulties, probably one of the greatest examples of Australian translational research is CPAP. Out of that Sydney invention of the early eighties is Australia's biggest biotech company by far: ResMed.

Dr FREELANDER: Yes, point well made.

Mr ZAPPIA: It seems to me there's always a need for more research, but are there any outstanding gaps with respect to sleep research that haven't been addressed? Can anyone tell me whether there's any particular area where we badly need my research?

Prof. Grunstein : I think in my submission I pointed out that really basically sleep science or discovery science is poorly represented. We don't have many people working in the basic mechanisms of asleep, and ultimately that's crucial in developing and translating treatments further down the line. I think it's a fair thing to say that we are weaker than many other countries because our strength lies predominantly in epidemiology and clinical research. I think it's already been pointed out that, in clinical areas, we have a weakness in areas of excessive sleepiness, narcolepsy. Our research has been predominantly strong in sleep and breathing disorders, so the other disorders tend to be underrepresented compared to other countries.

Prof. Eastwood : While not specifically addressing your question, Mr Zappia, we have an issue with losing a lot of our mid- to early career researchers overseas because we can't fund them. So there is an area of workforce need: we lose researchers overseas and we haven't got the funding to bring them back. We train them up magnificently, and then they go—and it's very, very hard for them to come back. So one of the research targets could, perhaps, be increased funding to keep them here, and to bring them back.

Mr ZAPPIA: That point was made to the committee by another witness last week.

Prof. Grunstein : I'd also make a point that the older researchers aren't getting any younger. We certainly have a lot of problems, particularly in clinical research, in succession planning—because it is hard, being a clinical researcher, getting the time to balance between clinical care and research time.

CHAIR: I think that was a pretty unkind reflection on Professor Hillman! But we'll move on.

Prof. Grunstein : He's young at heart!

CHAIR: The next area that we're going to look at is education and lifestyle more broadly, and the things that the committee should be looking at in this regard. Obviously this has been the area of much discussion and is fairly broad because it covers the full spectrum of lifestyle decisions that Australians are making, which may be contributing to fatigue and sleep problems. Professor Eastwood, you have put in a proposal in your pre-budget submission for a community education campaign. I might just ask the department—and, again, feel free to take it on notice—in recent years, maybe the last decade: what are considered to be the exemplars of public health education that the federal government's been involved with?

Mr Weiss : It's probably best to take it on notice. Tobacco is the one that leaps to mind immediately, but I'll take it on notice.

CHAIR: Could you also maybe take on notice the model, if there is a general model the federal government has used. For example, does the federal government primarily deliver those public education campaigns through partners? Are there examples where the government has done it itself? There are obviously a lot—for example, Slip, Slop, Slap; the Life. Be in it. campaigns; the HIV campaigns; tobacco et cetera. I'm just interested whether there is a commonality in terms of the delivery model that has been used at the federal level. Professor Eastwood, do you want to comment on your priorities in terms of community education?

Prof. Eastwood : Yes. I'd just make the point first off that this pre-budget submission is a collaborative, joint one between the Sleep Health Foundation and the ASA and, while there's overlap between the two asks in this pre-budget submission, the separation is along the lines that the ASA will deal with health profession and sleep medicine issues, and the Sleep Health Foundation will deal with the interaction with the community. I'll say, before I hand over to them, that they already have—developed—on the smell of an oily rag—a website which is designed for the community to access evidence-based information about sleep—all different areas of sleep. The website contains worksheets about sleep disorders and they are extraordinarily successful. So I think that they have a track record of doing that, and they would take primacy on this particular issue.

Prof. Bruck : You asked about the priorities?

CHAIR: Yes.

Prof. Bruck : I think one way to look at it is a little bit of a family perspective: that we need to get to all ages, and schools are a particular place where we need to target things, I think. We see very, very high rates of inadequate sleep in our adolescents, and there are a number of reasons for that. If you could start before adolescence, that would be great. They have health programs in schools, but they don't even talk about sleep at all. So I think in schools, in communities in its broadest sense including in aged care settings, and also in the workplace, so there are screening programs in the workplace, there are speaker programs, and so forth. We do set it all out in our submission: national media, social media, a speaker program, going into rural and remote areas—I think that is really important, Indigenous—something that we haven't talked about but is a real need, and online and other tools.

CHAIR: Does anyone else want to comment on community education or lifestyle issues?

Prof. Hillman : I think that it's important that we develop sort of a herd attitude towards sleep—a different attitude. It's very difficult—for example, a parent trying to impose some sleep disciplines within the household if they're talking to their child in isolation from a communal attitude; telling their children to put the phones away at 10 o'clock at night when the people next door are not doing that. So a herd attitude is important. The attitude of wearing short sleep as a badge of honour, which is a national thing—'Look what I've achieved on how little sleep'—needs to change. When we see changing attitudes around us, then our own behaviours will change with them. When we try to do these things in isolation or corral them to advice in the workplace, we're not going to make any progress. I think that it's a matter of getting a change in national attitudes towards sleep. Our national education campaign will address that.

Ms Clancy : With respect, I don't believe that attitude is as prevalent anymore, just by virtue of the number of benzodiazepine scripts filled every year. There are about seven million benzodiazepine scripts filled every year. I really believe that the attitude is changing and that people don't necessarily want to have these short sleep hours, but there are a number of factors that constrain their sleep hours, and insomnia is one of the issues.

Prof. Grunstein : Could I just make one point, which is maybe a little bit different but it's important. I recognise overall the need for quality information to get out to the public. The reality is that, if you look at what the media says—and I come to this from six years of being a member of the Australian Press Council—there's the amount of misinformation and incorrect stories or stories driven by press releases from mattress manufacturers or people trying to sell sleep apnoea machines. There's a lot of misinformation: everyone must sleep eight hours; sleep apnoea is going to fry your brain—all those sorts of things. We've got that problem as well. It emphasises the need for a structured education campaign that's solidly based on evidence, and, where that evidence doesn't exist, say so. I think that would be really important.

CHAIR: Could I clarify: what is your concern with someone saying you need to sleep for eight hours? Isn't the recommendation seven to nine hours for the adult population?

Prof. Grunstein : My concern is that a lot of people that you see clinically, for example, with insomnia have catastrophisation as part of their problem—'I'm not getting eight hours and that's what I'm told to.' There's a lot of individual variation around that figure. Not everyone needs eight hours. You can mislead people by not pointing out that what's important is how they're functioning during the day: are they sleepy, are they maintaining alertness and productivity? Some people may function quite well on 6½ to seven hours sleep. They may catch up a bit on weekends, but the hard and fast rule of eight hours can be quite damaging to some people.

Ms Clancy : The focus on quantity just creates performance anxiety around sleep and people then start to become fearful of it.

Dr Bin : Could I quickly comment on that from a population monitoring perspective. Unfortunately, the tools that we have to monitor sleep in the community all ask about sleep duration. There's the concept of: if you know the number, there's some magic number. Some of that needs to change. We don't monitor very sleep very well in Australia, in terms of our population surveys. There are two state based health surveys that actually ask about sleep and they ask about sleep duration. So the question for us to think about is: what is the best measure of sleep; how do we monitor sleep in such a way that we actually capture the notion of quality as well as quantity—not so much quantity as the opportunity to sleep?

Dr Barnes : Australia has the opportunity here to lead the world on this. There's been no nationwide sleep health awareness campaign or sleep health improvement campaign around the world. I know from my conversations with other members of the World Sleep Society that they're really excited about what's potentially going to happen in Australia. They are going to look at what we do and they are going to learn from that. I believe you've received submissions from a number of the international sleep research societies. I've just come back from a meeting of the program committee of the World Sleep Society conference that's going to be held later in the year. Australians are on about a third of the submissions for symposia, talks and short courses there. So we really do punch well and truly above our weight, both in research and clinical management, and we've got a chance now to make a real impact on the health of the nation.

CHAIR: Just one final question from me: a couple of witnesses during the course of the inquiry have eluded to school hours, particularly for secondary students, and the suggestion that because sleep patterns are changing and adolescents are going to bed later there is a case for looking at moving back the start of school at the secondary level. Obviously there are implications of that in everything from traffic management through to what the parents are doing. But has anyone actually analysed that option in detail? It's been mentioned in passing, but no-one's actually seemed to have had any concrete evidenced proposals.

Dr Barnes : Mary Carskadon, a researcher based in Rhode Island who spends six month of the year at the University of South Australia, has done a lot of the work around changing school starting times. And it's not just about changing school start times but also looking at the curriculum. The tradition has been to put the three Rs first off in the morning, because kids are going to be more awake, but perhaps you should be rescheduling it for later in the day and having other classes on first in the morning. She's done a lot of sleep monitoring in kids to show that they have small micronaps in those hours between about eight and 10.30 in the morning, the suggestion being that adolescents will be able to take better advantage of the time they spend in school if those more-academic subjects are scheduled for later in the day.

Mr GEORGANAS: In some cases in Europe they have shift hours, where a whole cohort of kids go to school in the morning between eight and two, and then the next batch goes from two to seven. It would be interesting to see the differences in—

Dr Barnes : Yes, they do that in the States as well, but there it is more around the fact that they don't have enough schools or enough teachers.

Mr GEORGANAS: But you'd maintain learning capacities better at different hours, wouldn't you?

Dr Barnes : Yes. Again, that's an individual thing. It's the same with shiftwork. There are individual susceptibilities to shiftwork disorder, and with children as well. But in general, particularly in those junior high school years, there is evidence to suggest that kids will learn better if those academic subjects are scheduled after the morning tea break rather than before it.

CHAIR: But that's separate to actually delaying the start of school.

Dr Barnes : Correct. Again, it's because of those implications around teacher rostering—

CHAIR: What is the argument for delaying the start of school? Does anyone think that's a serious proposition that should be considered by government?

Prof. Hillman : Delayed sleep phase—that is, going to bed later and waking up later—is a recognised adolescent sleep behaviour, so these programs have looked at that physiology and have designed school hours around them, and various experiments demonstrate that school grades go up. So, it's certainly worth considering. It's one of those ideas in evolution—again, being driven I think by the science of it.

Ms Clancy : I think it's also worth looking at Leon Lack's research over in South Australia that says basically that delayed sleep phase begets delayed sleep phase disorder, and the more you march your sleep onset forward the later you'll get up. But, again, then you have more of a tendency to march your onset further forward.

Prof. Hamilton : And with that, my reading of the research is that it's done mostly in America, where the school start times are actually quite a bit earlier than in Australia, and it's not necessarily translatable to Australia. I agree that we have to be very careful that we then don't embed a delayed sleep phase into the population by starting school even later than what might be ideal. So, I think it's—

Dr Barnes : It's an argument for having your sports classes first in the morning rather than after school, in the later afternoon—and dare I say art, or whatever; strike that from the Hansard!

CHAIR: We don't do that, I'm afraid—you're on record as thinking art is not a worthwhile subject!

Dr Barnes : But having those less-academic subjects before—not necessarily delaying school start times, but just rescheduling the school program—

Prof. Hillman : So, it's a fluid idea, with people trying to produce enlightened changes in behaviour based around what's known about sleep, so I think it's an idea that is worth keeping under surveillance.

CHAIR: But I don't think we need to spend much more time on it here. Dr Freelander—who loves art!

Dr FREELANDER: It's all right. I don't have an artistic bone in my body! Are we in danger of overmedicalising sleep? A lot of what we've heard in the evidence relates to lifestyle factors. I love the fact that we see it, or can see it, as a third pillar of health that we can concentrate on, but in some ways we've sort of concentrated a lot on how many sleep studies we do and how we get people in to see sleep physicians, when a lot of the evidence we've been given, it seems to me, is about lifestyle.

Prof. Bruck : I think there is a real danger there, and I think it's one that we really need to be aware of. I think it comes back, when we look at the really big issue of people not being able to sleep when they want to—the racing mind, the chattering brain and so forth—to people not medicalising that by going to their GP and straightaway getting a script, and to the answer not being seen as a medical answer. At the risk of sounding like a broken record, I will say that we know there are behavioural things that people can do, and that's the message that we need to get out to the public: 'You can problem-solve some of your sleep problems yourself by seeking out information, and you can make behavioural changes that could well make a difference. If that doesn't work and your GP thinks that you may have a sleep disorder, then go down that track.' So I think we do need to be careful and to fine-tune the messages that we do. We don't want to overmedicalise it, but we want to get these allied health professionals trained up so they don't think that the prescription pad is the answer as well.

Dr FREELANDER: We've also had lots of evidence that we're in the middle of an obesity epidemic. Over 50 per cent of people referred for sleep studies are obese. In terms of population health, wouldn't it be better to concentrate on what we can do in that space?

Prof. Bruck : Absolutely.

Dr Barnes : Except that we know that, if you don't have enough sleep, you're going to make poor food choices, so it may actually be the opposite direction of causality. We know that, if we sleep-deprive people and put them in front of a smorgasbord, they're going to make all the wrong choices. So I think we need to do both, actually, but I agree: it shouldn't be overmedicalised. A lot of this stuff is population health, and it just makes a lot of sense. But you'd be surprised at how little is understood in the general community.

Tammy Wolffs : Can I quickly follow up. I was just going to add, from a carer's perspective, that a lot of the causes of lack of sleep for carers relate to the same things that are in the general community—there might be anxiety, they might have medical conditions of their own or whatever—but, for a lot of carers, it is really dictated by the needs of the person with care needs. So, if they have to get up frequently during the night to attend to that person—dementia is a particular issue where people may wander during the night, or there may be young children with particular severe disorders where they need to be tended to during the night—they're often affected by things that are really outside their control, and the only solutions, really, are completely not medical solutions; they're for carers actually to be provided with more support and more replacement care, particularly during the night, so that they can sleep themselves.

Dr Bin : Just to follow up on Professor Bruck and Dr Barnes's points about sleep health in the community, I think one of the issues is around trying to integrate good sleep into existing health promotion and health education activities. I don't know if the ASA or the Sleep Health Foundation have some sort of existing information that they can communicate to people who deliver these programs and who are part of the Public Health Association to try to add them to existing programs so that people are getting the message that it's not only healthy sleep but also eating well and moving well, so that they're getting that whole package at the same time and can see the interrelatedness of all of those lifestyle behaviours.

Prof. Eastwood : Just quickly, we're in furious agreement that we don't want to overmedicalise sleep, but I'd like to draw your attention to one recent paper in the British Medical Journal, a very good journal. The conclusion in this paper was that sleep has a greater impact on adolescents' mental wellbeing than bullying, physical activity and screen time. As a consequence of that paper and a few other papers—

CHAIR: Could you provide that article to the committee.

Prof. Eastwood : Yes, I'll do that. What has happened as a consequence of that paper and other findings is that sleep lessons are now being offered to schoolchildren across Britain. It's not rocket science. There are strategies about helping them get to sleep and maintain sleep and also raising awareness about what the normal changes are to be expected in adolescent sleep. Education is the key to this, and evidence based information is important as well.

CHAIR: In the last 10 minutes we can go to 'miscellaneous'.

Dr FREELANDER: What about medication?

CHAIR: Medication—sorry. We might combine the two, seeing as we've only got 10 minutes left. Dr Freelander, do you want to lead off on medication?

Dr FREELANDER: We've had a lot of evidence about benzodiazepines. Since I was a medical student, concerns have been raised about the use of benzodiazepines for a whole range of reasons. We know they are the commonest group of drugs involved in fatal overdoses. Why can't we reschedule them? We've rescheduled opiates. Why can't we change the way we prescribe these medications?

Dr Cook : It is possible for them to be rescheduled. Obviously what that needs is a submission to the scheduling committee. They would look at the evidence, and a delegate would make the decision to upschedule or not. As you know, we have recently upscheduled codeine from OTC to S4, but obviously that is a decision based on the evidence provided that scheduling in and of itself would make a difference.

Ms Clancy : I believe Xanax was rescheduled to S8 back in 2014.

Dr Cook : Yes. As I say, it's a decision made at the time based on the evidence provided to support upscheduling.

CHAIR: Can you just explain what upscheduling would mean in terms of availability?

Dr Cook : If it's currently an S4, you would most likely look to make it an S8. But that's not the—

CHAIR: What does that mean? You still need a script either way.

Dr Cook : You still need a script. S8s are more strongly regulated by state and territory governments, perhaps. Strong narcotics are S8s.

CHAIR: I still don't understand. If I go to a GP and say, 'I want benzo'—

Dr Cook : I think I need the—

CHAIR: You can take it on notice if you want.

Dr Cook : intricacies of it.

Prof. Hamilton : For S8s, it's state based but there has to be a permit applied for by the prescribing physician for that particular patient in order to prescribe it. That's actually crucial because it prevents the doctor shopping that you can actually go on with other medications.

Mr GEORGANAS: So it's like a register, basically, so you can't doctor shop?

Prof. Hamilton : That's the key thing of it.

Dr FREELANDER: It also makes the doctor more aware, and you have to take more time—

Prof. Hamilton : More time to go through the indication—

Dr FREELANDER: It just seems really strange to me that they've done this with codeine, yet we've heard evidence after evidence after evidence about the dangers of benzodiazepines. There are seven million or eight million prescriptions written every year for these potentially very harmful drugs, and yet nothing's done.

Mr Buckham : I believe part of the controls and restrictions around upscheduling to an S8 is that recording and being able to track where these medicines are being prescribed and used, but there are also the real-time prescription-monitoring systems that a lot of jurisdictions are looking at and implementing. Benzodiazepines are frequently being called into there, so that will give prescribing doctors, other prescribers and dispensing pharmacists the ability to be able to look at who's prescribing what, and where and when, so there's an element of being able to monitor that doctor shopping. But there's also the initial step in terms of a limited consultation time. If someone's got an immediate concern around the ability to get to sleep, it being perceived as easier to prescribe benzodiazepine for a little bit to help them get back on track. But that little bit doesn't actually stay short; it prolongs into a misuse situation.

CHAIR: It seems to be highly irresponsible. I want to ask the department, and again take it on notice if it's not your area of expertise: when you've got a situation where there are 10 million scripts being issued a year for benzodiazepine, why doesn't that of itself trigger a regulatory review?

Dr Cook : If we're looking at the safety of these products, their safety profile is well known and their risk of abuse and misuse is well known. We, as a regulator—if you're talking about the Therapeutic Goods Administration—don't regulate medical practice. The decision to use a prescription medicine such as a benzodiazepine is a decision between the doctor and the patient. We can put warnings—zolpidem, for example, has a lot of warnings about its particular problems. It depends how far you wish to regulate the practice of a practitioner and the individual needs of that patient.

Our role is partly education. We provide product information and consumer medicine information to be disseminated to patients, so while it has been proposed that up-scheduling to S8 might influence behaviour, we would need to watch that. There is no real-time monitoring in place yet and there are still problems with opioids. It comes down to the relationship between the patient and the doctor and that time taken by the doctor to explain what is in the best interests in treating the patient. Unfortunately, as a regulator, I can't influence that.

Mr Buckham : My understanding is the real-time monitoring SafeScript has started in some parts of Victoria, but in terms of widespread—

Dr Cook : It's not widespread at the moment.

Prof. Grunstein : Could I make a point just quickly. If you are looking at, say, benzodiazepines, there are a whole lot of different drugs within that class, some that are less safe than others and some that are used for pretty diverse indications, including muscle spasm all the way to treatment of insomnia. The average insomnia patient using benzodiazepines for hypnotics, I think is not a huge proportion of benzodiazepine use. I think the increases that we've probably seen also relate to another epidemic which is methamphetamine, so for the rise in methamphetamine use, there's going to be that part of the population that's going to increase benzodiazepine use. I just wanted to correct one thing. It's actually quite hard to kill yourself if you just take benzodiazepines. I think that the combination of alcohol and other drugs with benzodiazepines is a problem. So we've got to look broadly at the whole problem before shifting everything to an S8 and understanding it. That may be the way we have to go, but I just think we need a closer look at all the issues.

CHAIR: We have been presented with evidence—I can't remember from where—that 90 per cent of people who go to their GP complaining of sleep problems leave with a script.

Prof. Grunstein : Yes, but, firstly that's data that's 10 years old from the BEACH study. I don't know whether that's relevant now. And I've got to be honest, I'm more concerned about people who get put on Seroquel and drugs like that, which is what is happening now in the community. What you need to know is: is that just short-term use and how much of it is people coming to present with acute insomnia rather than chronic insomnia? I just think we need more information. To base all our evidence on that one paper in the Australian Family Physician 10 years ago—we can do better.

Dr FREELANDER: I don't think anyone's doing that, but we've certainly had a lot of evidence of people who are chronic users of benzodiazepines and of people who have not been properly assessed before they've been given prescriptions and repeat prescriptions for benzodiazepines. It has been quite worrying.

Prof. Grunstein : I share your worry. I just want to make sure that we don't approach it with an approach that was taken trying to make zolpidem an S8 drug on its own about eight or nine years ago based on what was a lot of media beat-up. We've got to be careful.

Dr FREELANDER: We see children put on antidepressants and things for sleep disorders.

Ms Clancy : One thing about the benzodiazepines is we are talking about reward pathway response there and tolerance building—so, increases in use over time. We don't see that with SSRIs.

Mr Buckham : It speaks to the need for good education for the health workforce and people being able to identify and address and manage people with sleep conditions. It mirrors what happened with codeine and pain and the mismanagement or misuse of codeine as a stopgap, which propagates into more complex misuse and dependence, but also not having the ability to use treatments that are outside of pharmaceutical therapies—the cognitive behavioural therapies and those other mechanisms for managing a condition, which is becoming complex in terms of: if a prescriber has just got a short consultation time, what's the best thing they can do? And then it just perpetuates.

Dr FREELANDER: I've got one other question about medication, if I'm permitted.

CHAIR: Last question.

Dr FREELANDER: Is there enough evidence for the continued use of melatonin in sleep disorders? Would anyone like to comment on that?

Prof. Grunstein : In terms of the use of melatonin, we've conducted a study with Monash and Flinders University showing that it is an effective therapy in delayed sleep phase syndrome—people who can't get off to sleep until two or three in the morning or four in the morning and then can't get out of bed until 11 or 12. However, for all the other uses of melatonin, the limitations are very small studies, differences in the dosages—no-one can ever agree on a dose. And I think it's simply because melatonin is not patented by any particular company. There's no pharmaceutical industry funded research in the area. So it's good question, Dr Freelander, and I think we lack a lot of evidence in this area.

Dr FREELANDER: Good.

CHAIR: That concludes this session, so I thank you all very much for coming this morning. It's been very useful. Some of you are appearing for a second time. Thank you for your ongoing contribution to this inquiry. We will provide you all with a Hansard transcript of today's proceedings. If you find any errors in that, if you could come back through the committee secretariat by 25 February. Also, a number of you agreed to provide additional information or answers to questions on notice. Again, the sooner the better but definitely by 25 February would be very helpful in us finalising the report, which we're obviously keen to do before an election might come along and interrupt proceedings. Thank you again for being here today. To those on the telephone, I know it's very challenging when everyone else is physically present, so thank you for your participation as well. We have two exhibits from the Sleep Association and the Sleep Health Foundation. Those are accepted.

Proceedings suspended from 11:42 to 11:57