Patients Deserve Better
In a recent Facebook post Professor Ron Grunstein said "In the end what is happening is a net decrease in the quality of the clinical opinion provided to patients. They deserve better. What is happening is direct to patient sales of equipment by pharmacy chains and CPAP manufacturers backed by heavy marketing (my Facebook is inundated). How do you make patients aware of the breadth of treatments available now, explain risk etc without a qualified person talking to them? Its like no-one has read the Parliamentary Inquiry into Sleep Health recommendations. I would argue its not just GPs who need more education, its also the specialists that the GPs refer to! The guidelines for sleep medicine training are sup=optimal and need to be updated"
Indeed, patients do deserve better. Sleep Disorders Australia (SDA), and Hypersomnolence Australia (HA) wrote submissions to the government as part of the MBS review. Despite our advice the outcome has resulted in a drastic cut to on-site sleep studies being funded under the MBS. This resulted in the closure of over 35 (private) on-site sleep study locations, public hospital sleep labs and a reduction in public hospital beds for on-site sleep studies. This private facility filled a desperate shortfall in the public healthcare system, drastically reducing the wait time for MBS funded sleep studies. These closures have put unnecessary stress on an already overburdened public hospital system increasing the wait times for these tests, increasing the patients time to diagnosis exponentially particularly for those where home sleep studies are not suitable eg: narcolepsy, idiopathic hypersomnia and complex sleep apnea. It has also created a situation where many people with sleep apnea may never see a sleep specialist or any doctor at all that has any education or training with regards to sleep disorders much less sleep apnea.
The concerns about the MBS review changes were discussed at great length by various stakeholders including myself at the recent hearing in Canberra for the Parliamentary Inquiry into sleep health. The concern was such that it is one of the recommendations of the Committee that the Dept of Health ensures the recent changes are effective. The Committee also recommended “that the Australian Government and the Australian Competition and Consumer Commission monitor the Continuous Positive Airway Pressure industry to ensure that vertical integration in the industry does not result in actions that:
Limit the quality of care or clinical advice provided to patients; or
Result in anti-competitive behaviour in the industry
This is what Prof Grunstein refers to here; “What is happening is direct to patient sales of equipment by pharmacy chains and CPAP manufacturers backed by heavy marketing (my Facebook is inundated). How do you make patients aware of the breadth of treatments available now, explain risk etc without a qualified person talking to them?”. SDA know of people that have struggled on CPAP and have given up not knowing that there is any other alternative treatment for sleep apnea. Had these people not contacted SDA their sleep apnea would have continued to go untreated. It should not be left to a small not for profit charity that is run by volunteers and that receives no funding to explain to people “the breadth of treatments” available to sleep apnea sufferers. This should be done by qualified professionals – patients deserve at least that. We have heard stories of home sleep study tech’s selling CPAP machines from the boot of their car, chemist sales staff with no medical experience at all advising on the ‘best’ sleep apnea treatments, even sleep specialists that insist their patients use a particular CPAP machine, all with less than desirable results.
So we would definitely agree with Prof Grunstein “Its like no-one has read the Parliamentary Inquiry into Sleep Health recommendations.”
It has been said that the new triage arrangements are designed to reflect best clinical practice however it is a fact that doctors get approx. 2.5hrs of education in their entire medical degree on sleep (sleep in general, not sleep disorders in particular) yet under the new MBS guidelines they are now responsible for triaging patients with sleep disorders.
Lack of education and training of all medical professionals in Australia and the consequences of this with regards to sleep disorders was discussed and highlighted during the recent Parliamentary Inquiry into Sleep Health in Australia. So serious is this issue that the Committee made recommendations to address this problem too. But again, it’s like no one has even read the recommendations much less have any intention of implementing them.
Despite knowing the gross lack of education and training with regards to sleep and sleep disorders, under the new MBS guidelines we now have GP’s triaging people with suspected sleep disorders. They are expected to do this using self-report questionnaires. This presents a number of problems for example, more than half of patients with “clinically relevant” obstructive sleep apnea (OSA) may miss out on further assessment under the new Medicare criteria that enable GPs to directly refer patients for sleep studies. People with other sleep disorders are even more likely to miss out as these questionnaires are not designed to detect other sleep disorders*.
Researchers have found that the combination of apnea screening questionnaires – the Berlin (BQ), STOP-Bang and OSA-50 – with the Epworth sleepiness scale (ESS) was useful for identifying patients requiring further investigation for OSA, but missed more than half of those with “clinically relevant OSA”. Prof Garun Hamilton has also stated that when used alone screening questionnaires have poor specificity for moderate-to-severe OSA. He has also said “Surprisingly, very few studies have assessed the performance of the questionnaires in primary care populations”. So we are relying on poorly educated primary care doctors to use questionnaires, the performance of which have not particularly been assessed in a primary care environment. Also, self-report questionnaires rely on ordinary people to understand questions being asked of them by less than qualified doctors who will then determine if they may have a sleep disorder that needs to be assessed by either a home study (unattended) or is serious enough to be referred to a sleep specialist and a possible level 1 attended sleep study.
*It should also be noted that research has shown that home sleep studies are adequate for most cases of moderate to severe sleep apnea. However, while a home sleep study may suffice for straight forward (uncomplicated) moderate-severe sleep apnea only 15% of sleep apnea is considered moderate-severe. There are a lot of people with clinically significant sleep apnea that a home sleep study isn’t suitable for. They are not suitable for people with pre-existing conditions, such as lung disease, hypoventilation, heart failure, or other sleep disorders, such as restless legs syndrome, periodic leg movement disorder, bruxism, central sleep apnea, parasomnias, narcolepsy or idiopathic hypersomnia.
In the case of other sleep disorders, GP’s cannot know if their patient may have another sleep disorder, the questionnaires associated with the new Medicare guidelines for triaging patients with suspected sleep apnea will not help an inexperienced GP identify the possibility of another sleep disorder and having their patient do a home study won’t tell them their patient has another sleep disorder because a home sleep study isn’t designed to defect other sleep disorders. Without a level 1 in lab attended sleep study other sleep disorders are likely to remain undiagnosed.
However, as Prof Grunstein has pointed out it’s not just GP’s that are lacking the necessary education to properly identify, diagnosis and treat people with sleep disorders “I would argue its not just GPs who need more education, its also the specialists that the GPs refer to! The guidelines for sleep medicine training are sup=optimal and need to be updated.” SDA and HA see the problems created by poorly trained doctors every day. I made a trip to Sydney last month specifically to meet with Australasian Sleep Association (ASA) president Alan Young and Clinical Chair Sutapa Mukherjee to discuss these issues and ways we can work together to help address them. One of my suggestions was for there to be properly written guidelines for training and for identifying, diagnosing and treating sleep disorders.
The hypersomnolence and excessive daytime sleepiness caused by sleep disorders is debilitating. It has substantial direct and indirect effects on their physical and mental health and associated social functioning. The financial and social costs to Australia of untreated sleep disorders is enormous. We know this. Yet the MBS review changes have made accessing sleep studies harder for many people with sleep disorders. They have created a system whereby some people may never even see a doctor that is qualified to identify, diagnose and treat any sleep disorder much less complex ones.
If you have had a negative experience relevant to what I have written about here (including if you are faced with a lengthy wait time for a in lab sleep study) urge your doctor to write to the local area health authorities who helped create this situation (they will or should know who this is). Also urge them to express their concerns to the ASA. If you really want to make a difference write to the Federal Health Minister, Greg Hunt. This is a link to his contact details including his social media. Make some noise on that! Refer to the Recommendations of House of Representatives Parliamentary Inquiry into Sleep Health. You can read the full Sleep Health Inquiry report, Bedtime Reading, including the Committee’s recommendations here.
Michelle Chadwick Founder/Executive Director Hypersomnolence Australia Chairperson and Coordinator for Narcolepsy, Disorders of Hypersomnolence and Circadian Rhythm Disorders Sleep Disorders Australia