Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697636797527.pdf (Australia)
SUBMISSION TO PARLIAMENTARY COMMITTEE INQUIRY INTO SLEEP HEALTH AWARENESS IN AUSTRALIA FROM: FIONA MOBBS Inquiry into Sleep Health Awareness in AustraliaSubmission 86 COVER LETTER AND INTRODUCTION My name is Fiona and this is a small part of my story: I am a 48 year old caucasian woman and I was diagnosed with Type 1 Narcolepsy - Narcolepsy with Cataplexy in February/March of 2017.
My symptoms started to appear, or became more apparent in 2016 and it is quite possible that I have been living with the condition for longer then I realise, as compared to some of my narcolepsy peers, my diagnosis has come quite late in life.

I also suffer from several other health issues, however narcolepsy has had and continues to have the greatest impact on my life, physically, financially, socially, mentally and emotionally.
In the relatively short period of time that I have been living with and trying to manage my narcolepsy, I have had many experiences where I have been extremely frustrated, embarrassed, saddened and angered by the lack of knowledge and understanding of narcolepsy, particularly by the health professionals who have treated me and continue to treat me.

My cataplexy episodes are at the extreme end and usually last for half an hour.
This is from the time I first start to feel the symptoms – I slowly and unintentionally disengage from any activity or conversation I am participating in, my body starts to feel extremely heavy, starting with my head.

My eyes will close and my arms will drop by my side as the rest of my body gets heavier and heavier, until eventually I am on the ground.

I am fully conscious, however completely unable to respond.

I cannot move, nor can I speak.

If I can, it will be very mumbled or muffled.


So when a paramedic, nurse or any other health professional is yelling at me to open my eyes and respond, or tell them my name, this is very confronting and upsetting for me.

I can hear and understand what they are saying and I desperately want to answer them so that they stop yelling at me and the frustration in their voice goes away, but I can’t.

My voice and body are trapped for now.


I can also experience other smaller cataplexic episodes where my legs will just start shaking, or they will buckle and give way underneath me.

My body constantly feels fatigued and wants to rest.

I can lay down and go through the motions like every other person who lies down to sleep, except that when I wake up I won’t feel refreshed.

My body will still only be slightly recharged.


If I ‘overdo’ it one day, there’s a good chance I won’t be able to get out of bed the next day.

There are other symptoms I experience with my narcolepsy, however this is a brief outline to give you a glimpse into my life with type 1 narcolepsy and why I am making this submission.

Inquiry into Sleep Health Awareness in AustraliaSubmission 86 SUBMISSION TO PARLIAMENTARY COMMITTEE INQUIRY INTO SLEEP HEALTH AWARENESS IN AUSTRALIA TERMS OF REFERENCE 1.
Education, training and professional development available to healthcare workers in the diagnosis, treatment and management of individuals experiencing inadequate sleep and sleep disorders; Opinion   there is a definite lack of knowledge and understanding among the health professionals who I visit on a regular basis for diagnosis, treatment and management of my type 1 narcolepsy, as well as other health professionals I have come across at running events, shopping centers, GP practices and hospitals, to name a few.
there is a lack of knowledge and understanding among health professionals, that there is a difference between narcolepsy and cataplexy, what the differences are and as such that they may require different treatment and management.

 many health professionals have never even heard of narcolepsy or cataplexy  just because you have a qualification or have done further study into sleep disorders, it does not mean that each patient is a text book case.
yes you are the specialist by title, however your patients are the ones who live with the condition you have diagnosed them with on a daily basis.

 Recommendations  mandatory initial and ongoing education, training and professional development for sleep specialists, in both public and private practice, as well as other health professionals working in the field of sleep disorders.
 mandatory education, training and professional development for all health professionals in hospitals, including staff in the emergency department and surgery, GP practices, paramedics and those who are still registered as a health professional and use their knowledge as a health professional in their day to day work life.

And education and training made available to any health professional who requires it for their current or upcoming position or for personal and professional development.
education can be in the form of presentations or discussions with sleep disorder patients and peers, visitors and speakers from interstate and overseas, meetings with pharmaceutical companies to keep up to date with current treating medications, as well as any trials coming up for future new formulas.

Online training through webinars or included as part of a health professionals continuing professional development (CPD), a requirement of their registration in Australia.
 Inquiry into Sleep Health Awareness in AustraliaSubmission 86    reminders to all health professionals on a basic but very important skill, the importance of good communication with their patients, to listen and be open minded that their patients/s may be experiencing symptom/s that are not necessarily part of the obvious diagnosis signs.

accept that you don’t always get it right or have all the answers.
You may have prescribed your patient certain medications and treatment that you have determined are the best course of treatment for them at the time, however it is not your life that is being impacted on a daily basis, so be open to discussions regarding other treatments and medications.

have health professionals attend events, such as a Narcolepsy Australia conferences or other such similar events.
Thank you for taking the time to read my submission Inquiry into Sleep Health Awareness in AustraliaSubmission 86