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Sleep Health in Patients with Sleep Disorders Survey Feedback

We conducted an online survey, "Sleep Health in Patients with Sleep Disorders". The aim of the survey was to get a snapshot of the sleep health of people diagnosed with sleep disorders, including information pertaining to their sleep habits, how much people with sleep disorders know about sleep health, what they have been advised by their doctors, and what they think they should have been told.

Thank you to all those that participated. The last question in our survey was "What is your biggest concern/hurdles you face or issues you think need addressing?". There was a common theme throughout the answers to this question across all sleep disorders. The majority of people that completed our survey do not feel they are given enough information and in some cases are given no information at the time of their diagnosis or at follow up appointments.

Below are some of the responses we received from patients diagnosed with Idiopathic Hypersomnia, Narcolepsy and Circadian Rhythm sleep disorders and sleep apnea. Idiopathic Hypersomnia

"My biggest concern is not being able to work as hard or achieve as much in terms of study and work due to not having the physical capacity that others without IH have"

"My biggest concern is that my doctors will never figure out why I have this horrible disorder and I will miss out on so much more of my life"

"I spend so much of my life asleep. I'm literally sleeping my life away and there is nothing I can do about it. I don't think anyone understands how serious that is”

"I have no quality of life, I'm just existing”

“Having children's activities that I can not attend" "Never knowing what it's like to feel normal"

"I'm always on the verge of losing my job because I can't wake up in the morning. This is really stressful"

"It took years for a GP to take me seriously and refer me to a sleep specialist. I wish someone had told me at the beginning that even with a diagnosis and medication, I would not be 'fixed'. That lifestyle changes are inevitable and necessary, and not to fight so hard to live a 'normal' life."

Circadian Rhythm Sleep Disorders (CRD)

21% of all those that responded to our survey report having a Circadian Rhythm Sleep Disorder (CRD) diagnosis. This makes up the second largest patient group behind those diagnosed with Idiopathic Hypersomnia who completed the survey. These are some of their comments;

"People need to know that there is more than one sleep pattern, just because mine is different doesn’t mean yours is better"

"I'm constantly sleep deprived trying to conform to a normal lifestyle. I never get enough sleep, it affects every part of my life"

"People, doctors included need to stop trying to make me live what they consider a “normal” schedule, you make things worse"

"It’s lonely being awake when everyone else is asleep, I wish people would understand that I don’t choose this lifestyle"

"Doctors need to learn and believe that good sleep hygiene isn’t a magical cure for Non-24"

Narcolepsy Type 1 (with cataplexy) "Doctors need to stop trying to make me stay awake all day. I can't its too hard and makes me feel terrible. I have trouble staying asleep at night so I don't sleep much more than about 6 hours and I don’t think the quality is much good then they tell me don't nap during the day and give me stimulants to keep me awake. My doctor even tells me to drink caffeine drinks and it just makes me jittery."

"Refusal by doctors to liaise on my behalf with university and work to confirm and clarify my needs so that I can access appropriate entitlements. It is very hard to get people to understand that my condition is serious and permanent if my doctor won't help by writing letters etc."

Narcolepsy Type 2 (without cataplexy)

"I’m concerned about the lack of training and education of medical professionals. I’ve been to 3 sleep specialists and none of them know anything about narcolepsy." Sleep Apnea "There is so much I didn't realise/wasn't told when I was diagnosed and got my CPAP. I wasn't told about CPAP maintenance. I didn't know CPAP was only going to help with my daytime tiredness and that I was still going to be super tired and randomly fall asleep during the day. And I didn't know that the medication to help this was SO expensive! Why isn't it covered by the PBS?!"

"The CPAP helps but I still feel tired, my doctor doesn't seem to be interested he just brushes me off."

"I tried CPAP but I still felt tired. My doctor said this is common and prescribed me modafinil but I can't afford it."

"I’ve tried everything, CPAP, oral devices they help but I still fall asleep without warning numerous times during the day."

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