The House of Representatives Standing Committee on Health, Aged Care and Sport has commenced an Inquiry into Sleep Health Awareness in Australia.The Committee invited submissions from the public to its inquiry last month. It received more than 100 submissions, this has now led to a roundtable public hearing that will be held at Parliament House, Canberra on 30th November. SDA Director Michelle Chadwick and our newsletter editor (also a Narcolepsy Australia committee member), Pamela Bird have been invited to attend and give an opening statement at this very important discussion.Some of the issues the inquiry will look at include:
• The potential and known causes, impacts and costs (economic and social) of inadequate sleep and sleep disorders on the community;
• Access to, support and treatment available for individuals experiencing inadequate sleep and sleep disorders, including those who are: children and adolescents, from culturally and linguistically diverse backgrounds, living in rural, regional and remote areas, Aboriginal and Torres Strait Islander;
• Education, training and professional development available to healthcare workers in the diagnosis, treatment and management of individuals experiencing inadequate sleep and sleep disorders;
• Workplace awareness, practices and assistance available to those who may be impacted by inadequate sleep or sleep disorders, with a focus on: rostering practices for shift workers, heavy-work requirements, and the transport industry as compared to international best practice; and
• Current national research and investment into sleep health and sleeping disorders.
Update 26th November:
The program has been announced. There will be four sessions in the program, as follows:
- Causes, impacts and costs of inadequate sleep and sleep disorders
- Diagnosis, management, treatment and research of inadequate sleep and sleep disorders
- Workplace awareness, practices and assistance regarding inadequate sleep and sleep disorders
- Individual experiences.
The attendees include;
Australasian Sleep Association
Canberra Sleep Clinic
CRC for Alertness, Safety and Productivity
Department of Health
Let Sleep Happen
Pharmaceutical Society of Australia
Public Health Association of Australia
Royal Australasian College of Physicians
Safe Work Australia
Sleep Disorders Australia
Sleep Health Foundation
Woolcock Institute of Medical Research
Michelle and Pam will write a joint report about the roundtable public hearing for our next edition of SDA News. You can follow the inquiry and learn more about who is on the committee at the Parliament of Australia website. https://www.aph.gov.au/Parliamentary_Business/Comm...
The pre-existing sleep laboratory in the ‘old’ Royal Adelaide Hospital (RAH) did not get moved over in the shift to the new RAH. Hospital managers, in their wisdom decided that people can use the sleep services at Adelaide's Queen Elizabeth Hospital (QEH). However, the QEH is already struggling under the pressure of the closure of the Repatriation Hospital.
Central Adelaide Local Health Network chief executive Jenny Richter has also said that many patients can have sleep studies at home.
Two things that have not been considered in this decision:
1. An onsite Sleep Laboratory is an essential facility in a modern hospital. It is a vital part of a complete diagnostic and treatment service addressing the needs of the 1 in 3 Australians who suffer from respiratory illnesses and nearly 1 in 10 Australian adults with sleep disorders. There are more than 1.6 million people living in South Australia, you don’t need to be too bright to work out that this decision will put an enormous strain on the QEH and will extend wait times for onsite sleep studies to an unacceptable level.
2. While home sleep studies can now be performed in many patients, advanced age, frailty and the high prevalence of severe co-morbidities in public hospital patients dictates the need for supervised onsite sleep studies in as many as 50% of patients. In addition to that people with Narcolepsy and Idiopathic Hypersomnia (IH) simply cannot have a sleep study in their own home. They must have an on-site sleep study. In fact unless they have an on-site sleep study they cannot access treatment. It is already difficult for people with IH and Narcolepsy to be accurately diagnosed in a timely manner (on average it takes at least 10 years to receive an accurate diagnosis). Without on-site sleep lab services at the new RAH the diagnosis and treatment of people with IH and Narcolepsy will be severely comprised.
What are we doing about it?
SDA has been instrumental in the push to have the sleep lab from the old RAH moved to the new RAH. We started an online campaign with social media posts and with the support of the Australian Medical Association (South Australia), along with the Sleep Health Foundation, Hypersomnolence Australia and Narcolepsy Australia we started an online petition. The petition received over 2000 signatures in just 10 days. The petition was sent to the SA Minister for Health and Wellbeing, Steven Wade and Jenny Richter on the 5th November. Our efforts resulted in ABC News doing a print story and TV interview.
This doesn’t affect me, I don’t live in SA.
Not true, this decision affects us all. The RAH has been one of Australia’s leading training facilities and has contributed to valuable research. This is part of a Facebook post I wrote on 22nd October “…This goes beyond there not being a public sleep lab in which people can have inpatient sleep studies. No sleep lab = no training facility. Qualified sleep specialists that are trained in all aspects of sleep and sleep disorders are few and far between as it is. We cannot afford to lose a training facility in one of Australia's major cities. No sleep lab = no facility to undertake clinical trials to allow patient access to therapies and clinical/scientific research to progress sleep medicine and science…”
The fight is not over... if you would like to express your concerns directly you can send them to: Minister for Health and Wellbeing, Steven Wade [email protected]
cc: Ms Jenny Richter email: [email protected]
by Michelle Chadwick
The 2018 Sleep Awareness Week will be focusing on caffeine and the role it has on society. Caffeine can be very effective for improving your concentration, alertness and energy. However, if you consume caffeine on a daily basis these positive effects can be brief and it can reduce the quantity and quality of your sleep. If you use caffeine to counter tiredness, feeling sluggish, or difficulty concentrating it could also be masking a sleep disorder. Read more here
Idiopathic Hypersomnia Awareness Week® (IHAW) is held from 3rd to 9th and Restless Legs Awareness Day (RLSAD) is on September 23.Read more about the IHAW here and read more about the RLSAD here.
The Sleep Disorders Australia Annual General Meeting will be held @ 7.00pm Monday 29th October 2018 to be held in Sydney. As per Sleep Disorders Australia’s Management Guidelines there are two board positions that will become vacant. The positions are Company Secretary and a shared Publications role/Sleep Apnea Coordinator.
The Publications role includes assisting with the management of our website and other IT requirements. Advanced Microsoft Office skills desirable. The Sleep Apnea Coordinator duties are as follows:
• Coordinate our CPAP “buddy” program, ie: keep an updated list of who our buddies are and refer people to them when necessary.
• Keep sleep apnea info eg; factsheets and website content etc up to date.
• Keep abreast of any relevant new research discoveries. Also, policy decisions regarding the Department of Health ie: MBS, PBS etc that affect sleep apnea sufferers. And benefits for sleep apnea sufferers eg: health fund rebates and other related government rebates.
• Share relevant news, information and research etc with our Publications Director ie: for the newsletter, website, social media.
• Maintain the used CPAP ad page on SDA’s website.
• Work with the Marketing Director on the annual Sleep Apnea Awareness Day.
• Work with others on updating our current presentation.
• It would be desirable if the sleep apnea coordinator was an active member of SDA’s private Facebook Support Group (or preferably a group admin alongside our other admins).
If you have experience and time to volunteer for either the role of Company Secretary or (shared) Publications/Sleep Apnea Coordinator please forward your nomination to secretary[email protected]. Nominations are open until 31st August.PLEASE NOTE: All work is done online, however as a Board Member you would be required to attend the National AGM (expenses paid). The board generally meets a few times via teleconference throughout the year although there may be one other mid year face to face board meeting that you would be required to attend.
Friendly reminder! Membership renewals are now overdue. If you haven't already please renew as soon as possible.
Exciting news for members is that we have reduced membership costs – $25.00 for yearly membership with an electronic newsletter copy, $30.00 yearly for a hard copy posted.PLEASE NOTE:We have a new Treasurer and Membership Director, Karalyn Patrick.Emails to: [email protected]Postal address is:P.O. Box 455 Willunga SA 5172
The 2017 Nobel Prize in Physiology or Medicine was jointly awarded to Jeffrey C. Hall, Michael Rosbash and Michael W. Young for their “discoveries of molecular mechanisms controlling the circadian rhythm”..To honour this great achievement the slogan of World Sleep Day 2018 is ‘Join the Sleep World, Preserve Your Rhythms to Enjoy Life’. The goal is to raise awareness of the importance of circadian rhythms in healthy sleep. More info HERE.
SDA runs its Annual Appeal each year leading up to the end of the financial year. SDA receives no government funding, and relies on membership subscriptions and donations to fund its activities. Donations are tax deductible. See info HERE.
The RLS Foundation (USA) offers free webinars on topics that are relevant to understanding and coping with Restless Legs Syndrome (RLS). Their one-hour webinars include a Q&A session after the speaker. This is a great opportunity to share questions and comments with other patients, medical professionals and RLS experts. When you register for the webinar you can submit your questions on the topic to be answered as time allows.
Their next webinar is on Tuesday, March 14th, 2018. Click HERE for more details
Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles. 10th March 2018 marks Suddenly Sleepy Saturday - aka Narcolepsy Awareness Day. learn more about this condition and how it can affect people. See info HERE
A US study has found that a drug with a similar composition to synthetic could be a safe and effective treatment for obstructive sleep apnea. See article in the March 2018 issue of the SDA News.
28 February 2018 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research. See Info HERE.
SDA has launched campaigns in Queensland and Tasmania to educate people about the dangers of driving when tired. We hope to extend the campaign nationally. Read more HERE.
The Annual Rotary Christmas Raffle was drawn on Monday 15 January at the Merrylands Bowling Club. Unfortunately, none of the tickets sold by SDA were among the winners. Details found here.
New Australian research has discovered that dementia in the elderly can be predicted by measuring REM sleep. Read the article in the December issue of the SDA News.
The 2017 Nobel Prize in Physiology or Medicine has been jointly awarded to Jeffrey C. Hall, Michael Rosbash and Michael W. Young for their “discoveries of molecular mechanisms controlling the circadian rhythm”. Read more HERE.
New research from UCLA has discovered evidence that a gene in skeletal muscle controls the ability to rebound from sleep deprivation. This surprising evidence could lead to alternative treatments for insomnia, other than medications that target the brain. Read more in the October issue of the SDA News.
People with obstructive sleep apnea (OSA) may be at a higher risk of developing atrial fibrillation or irregular heartbeat. Canadian researchers have published a recent study, which has been summarised in the August issue of the SDA News.
Researchers in Europe have found that insomnia can be linked to an increased risk of heart attack and stroke. A short report and the summary of findings was included in the June 2017 issue of the SDA News.
A study of children with sleep apnea has found significant reductions of grey matter in several regions of the brain. The findings point to a strong connection between sleep disturbance and the loss of neurons in the developing brain. A report on the research and findings is included in the June 2017 issue of the SDA News.