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? Hypersomnolence Australia 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, Sleep Disorders 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 (see below).
This is from our Facebook post where we shared the video: "You don't normally see the needs of people with Idiopathic Hypersomnia highlighted so prominently in the media so we are proud to share with you the ABC news story regarding the sleep lab for the new RAH. Many of you know how difficult it is to get an accurate diagnosis and treatment even when there are onsite sleep labs available. Imagine how much more difficult it is for people when their options are limited or when there are no options at all because they simply can not afford to pay for a sleep study in a private clinic. So it was important to us to refer the ABC to someone that knows how crucial it is that the new RAH has a sleep lab. Jessica Ludwig is a great advocate for Idiopathic Hypersomnia. She was an Idiopathic Hypersomnia Awareness Week ambassador and does a great job of representing people with IH in this interview (she is wearing an IHAW tshirt!). Please join me in thanking Jessica for helping to raise awareness of the very important issue of the old RAH sleep lab needing to be moved to the new RAH and for flying the IH flag!
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 ministerforhealth@sa.gov.au cc: Ms Jenny Richter email: jenny.richter@sa.gov.au