Updated: Jul 24, 2019
The final report of the parliamentary inquiry into Australia’s ‘Sleep Health’ has been “hailed as a defining moment for patients, clinicians and health experts”, according to the Australasian Sleep Association and the Sleep Health Foundation. I took part in the inquiry and I’m pleased to say I agree with this summation.
The findings of the National Inquiry into Australia’s Sleep Health in Australia, conducted by the House of Representatives Standing Committee on Health, Aged Care and Sport, are that sleep should be placed as the third pillar of health, alongside fitness and nutritrion. Excerpts from the Chairman’s introduction below;
“Sleep is a fundamental human need and, along with nutrition and physical exercise, it is one of the three pillars of good health.
We have known the importance of sleep for decades yet for many reasons, sleep health has not received the attention it deserves within our community and in the health programs run by state and federal governments. In part this is because there are still many who think that it’s a sign of ‘toughness’ and a badge of honour to be able to get by on less sleep. The reality is that such an approach does harm — in some cases with very serious consequences.
In reality very few people are able to operate optimally on minimal sleep. In addition to the health impacts, fatigue results in decreased productivity and is the cause of more road accidents than alcohol and drug use combined.
My hope is that this report will help bring attention to the central function of sleep to overall health and wellbeing and increase the focus placed on sleep among policy makers and in the broader community…”
After seven long years of Hypersomnolence Australia raising awareness and advocating for Idiopathic Hypersomnia we are glad to see that it is finally moving out of the shadows. The Australian Parliament have recognised Idiopathic Hypersomnia, the need for better education of medical professionals, access to medications and the impact it has on people’s lives. “While not as prevalent as OSA, narcolepsy and associated conditions such as idiopathic hypersomnolence can have a debilitating impact on a person’s quality of life. There is a need to improve the awareness of these conditions both within the community and among medical practitioners. Further consideration should be given to emerging treatment options that may provide some people experiencing these conditions the opportunity to improve their quality of life…”
The parliamentary report had a specific section on sleep disorders which among other things said: “Idiopathic hypersomnia is characterised by an ‘excessive sleep need’, often ‘greater than 12 hours a day.’(Prof Ron Grunstein). Sleep Disorders Australia and Hypersomnolence Australia (SDA-HA) stated that ‘idiopathic hypersomnia is a neurological disorder diagnosed by identifying key clinical features’ and excluding other possible conditions.”
The report also recognised that doctors were diagnosing unexplained cases of excessive daytime sleepiness and genuine cases of idiopathic hypersomnia as narcolepsy so that people can access treatment; this needs to change not just for patients but so that the real prevalence of both narcolepsy and Idiopathic Hypersomnia can be understood.
The report expressed the Committee’s concern that many people with sleep disorders have experienced stigma as a result of their condition. It was acknowledged that this stems from a lack of understanding in the community. Narcolepsy and Idiopathic Hypersomnia are not well understood by employers or Government Departments. They are not recognised as a disability for the purposes of the Disability Support Pension (DSP) or the National Disability Insurance Scheme (NDIS). It is important that these issues are addressed.
The Committee appreciated the individuals who shared their personal experiences of living with a sleep disorder, or caring for a family member or friend with a sleep disorder. Their accounts highlight the debilitating and wide-ranging effects that sleep disorders can have on quality of life. This is a reminder that telling our stories is a powerful way of being heard.
It was also recognised that illnesses such as Idiopathic Hypersomnia are both poorly understood in the medical community and are difficult to diagnose and that this is due to a lack of training and a dearth of suitable facilities. Also, sleep disorders are not an available career path for doctors except under respiratory medicine. In fact the committee understood the impact of this so much that one of its recommendations is that “the Australian Government investigate options to separate the existing ‘Respiratory and Sleep Medicine’ speciality into independent ‘Respiratory’ and ‘Sleep Medicine’ specialities under the Australian Health Practitioners Regulation Agency framework.”
The recommendations that affect people with Idiopathic Hypersomnia are as follows (abridged):
That the Australian Government fund research focused on the prevalence, causes, and mechanisms of rare or not well understood sleep disorders, including narcolepsy and idiopathic hypersomnia.
That the Department of Health undertake a review of the Medicare Benefits Schedule as it relates to sleep health services in Australia. The review should include, but not be limited to ensuring recent changes to enable general practitioners to directly refer patients to diagnostic sleep studies are effective.
That the Australian Government in consultation with the Royal Australian College of General Practitioners and other key stakeholders assess the current knowledge levels of general practitioners, nurses and psychologists in relation to sleep health, and develop effective training mechanisms to improve the knowledge of primary healthcare practitioners in diagnosing and managing sleep health problems.
That the Australian Government investigate options to separate the existing 'Respiratory and Sleep Medicine’ specialty into independent ‘Respiratory’ and ‘Sleep Medicine’ specialities under the Australian Health Practitioners Regulation Agency framework.
That the Australian Government, in partnership with the states, territories and key stakeholder groups, work to develop and implement a national sleep health awareness campaign. The campaign should:
Provide information on the symptoms, causes, and health impacts of sleep disorders and available medical support for sleep disorders; and
Communicate that improved sleep health can reduce the risk of: developing a serious health condition, impaired judgement and mental functioning, and decreased productivity and performance.
Click here to read the full report and all of the recommendations.
This doesn’t immediately change things around the diagnosis and treatment of Idiopathic Hypersomnia however I am pleased that as a result our submissions to the Inquiry and years of lobbying the Australasian Sleep Association (ASA) they have approached me to work on applications to make medications like Modafinil easier to access on the PBS.
This parliamentary report is a world first. No other national government has ever taken sleep health so seriously. Indeed, it’s safe to say that no national government anywhere in the world has ever discussed the seriousness of Idiopathic Hypersomnia including the need for education for medical professionals, research, and better access to medications and support. This is definitely the start of major change in the way Idiopathic Hypersomnia is perceived and treated in Australia, and Hypersomnolence Australia is proud to be leading the way on this advocacy. Thank you to all of our supporters. With your continued support and encouragement, I am confident that the change we so desperately need will eventually be felt by all those living with Idiopathic Hypersomnia.