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Meeting with ASA President and Clinical Chair Sleep Downunder Conference 2019

I was in Sydney on Wednesday 16th October for the Australasian Sleep Association’s Sleep Downunder conference and to attend meetings with key stakeholders and also the new ASA President, Dr Alan Young and the Clinical Chair Dr Sutapa Mukherjee.

We discussed a number of things, the 3 main issues being;

  1. Access to medications.

  2. Doctor education and the negative consequences of using an Idiopathic Hypersomnia diagnosis (that goes on the record as a Narcolepsy diagnosis) to access medications not otherwise available to people who do not have IH, or Narcolepsy.

  3. The recommendations of the sleep health inquiry particularly the recommendation that sleep and respiratory needs to be two separate specialities.

Both Dr Young and Dr Mukherjee are clinicians (practicing sleep and respiratory specialists). They spoke about their concerns relating to each of those 3 issues and we discussed ways that we (Sleep Disorders Australia and Hypersomnolence Australia) can work with the ASA to help address them.

People with IH (and narcolepsy) generally see a sleep and respiratory specialist. The problem with this is that quite often these specialists are more interested in the respiratory side. We also know that training and experience on the sleep side of this specialty is typically lacking compared to the respiratory side. We spoke about the need for sleep to be its own medical specialty. The benefits of having sleep medicine officially acknowledged as a separate medical specialty will mean that doctors that want to do this training will have a genuine interest in sleep medicine which is clearly not the case at the moment.

At present, training in non respiratory sleep disorders is minimal at best with many doctors not seeing one single patient with IH or Narcolepsy throughout their entire specialty training. Their first encounter with someone that may have IH or Narcolepsy can be years after their training by which point they have had no experience or education at all. This often results in various negative consequences including over-diagnosis, misdiagnosis and patients receiving no relevant, necessary or even useful information and advice at the time of diagnosis or follow up. Having a separate sleep medicine specialty will hopefully address the problem we have at the moment which is doctors who do not have any interest or indeed any relevant training diagnosing and ‘treating’ people with non respiratory sleep disorders, ie: IH and Narcolepsy.