Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697636509120.pdf (Australia)
Inquiry into Sleep Health Awareness in Australia The Standing Committee on Health, Aged Care and Sport will inquire into and report on sleep health awareness in Australia, in particular: 1) The potential and known causes, impacts and costs (economic and social) of inadequate sleep and sleep disorders on the community; a) An important sleep disorder is Restless Legs Syndrome (RLS) This is something of a misnomer because the disorder can affect the body and arms although it is most common in the legs.
RLS affects 5 to 10% of the population in degrees ranging from inconvenient to incapacitating.

b) A description of the disease can be found at: rls-uk.org as follows.

i) “These five essential features must be present for a correct diagnosis of restless legs syndrome (RLS): ii) You have a strong urge to move your legs (sometimes arms and trunk), usually accompanied or caused by uncomfortable and unpleasant sensations in the legs.
iii) Your symptoms begin or become worse when you are resting or inactive, such as when lying down or sitting.

iv) Your symptoms get better when you move, such as when you walk or stretch, at least as long as the activity continues.

v) Your symptoms are worse in the evening or night than during the day, or only occur in the evening or nighttime hours.

vi) Your symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis.
RLS often causes difficulty in falling or staying asleep, one of the chief complaints of the disease.

Many people who have RLS also have periodic limb movements (PLMs) - jerking of the arms or legs that is often associated with sleep disruption.” c) Some people only have the “uncomfortable and unpleasant sensations in the legs” while others report, in addition, more or less severe pain in the legs or other areas of the body.
d) Usually the feelings and pain are associated with lying down and trying to relax or sitting for some time.

Consequentially the most disruptive effect is lack of sleep.

In my own case when my RLS was getting worse I might fall asleep before the sensation started and sleep for 30 minutes before waking and having to walk around until about 5 or 6 am.

Then I could sleep for another hour before having to get up for work.

At weekends attempts to sleep late were frustrated by a return of the symptoms.
The sensations also occur when sitting in a cinema or theatre, sitting while driving or as a passenger in a car, or in an aeroplane.

e) One of the most serious effects of sleep deprivation is loss of memory.

Inquiry into Sleep Health Awareness in AustraliaSubmission 107 f) Obviously it’s dangerous to drive but many people have to drive to earn their living.

The other result of tiredness is the inability to operate a computer because the RLS was too distracting when sitting or standing still.
2) Economic effect of RLS A source of this information is a synopsis of a report by the European Brain Council https://www.rls-uk.org/news/2017/9/23/ebc-study which follows in Appendix 1.

I haven’t found the original and I probably can’t afford to buy it but I am sure it would be a good thing for your committee to purchase.
3) 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; a) Most support comes from GPs.

Most GPs don’t understand the problem so they prescribe the standard solution which is drugs.
Most of the drugs have bad side effects and some of them are addictive or at least become very dependant.

b) GPs don’t see any need to refer patients to specialists because the drug manufacturers seem to instil them with confidence that they can save the patient without help and if not then it’s because the patient is just complaining about nothing.

c) I was referred to a neurologist who charged me a lot of money.

I explained that I had tried some drugs and I had adverse reactions to them.
He said that I had tried the drugs he would have prescribed and if I couldn’t take them then there was nothing else he could do for me.

I told him that I had relief by adopting a diet and he just scoffed and said that RLS had nothing to do with diet.

He offered nothing else.

d) Augmentation is a frequent problem.

Augmentation means that the effect of the drug decreases so the GP frequently raises the dose.

Eventually the dose cannot be raised any further and the patient has to stop using the drug.
The pain and suffering is said to be comparable or worse than getting off heroin and requires strong painkillers.

The symptoms of RLS spread over most of the body and for extended periods of time, often 24 hours per day, until the body adjusts to life without the drug.

Most GPs don’t understand Augmentation and don’t recognise it when it happens.

This correct action is to lower the dose very gradually and start on some other treatment for RLS and painkillers.
This is a very unhappy outcome for the patient.

I have been told that there is usually no need to start the patient on the drugs that lead to augmentation as other drugs are available.

e) The RLS is also triggered by drugs for other conditions.

Typically anti-depressants, anti hystimines ( I think) and quite a few other drugs.

Many GPs seem to be unaware of this.

f) The latest research results are too slow to reach the GP.
This is probably especially the case if the latest treatment does not involve proprietary drugs so there is no drug Inquiry into Sleep Health Awareness in AustraliaSubmission 107 company pushing the information to the doctors.

For example it is now recognised in some leading hospitals overseas that iron in the blood stream is often the most critical thing.

The iron level is measured by the concentration of various compounds in the blood, particularly ferritin.
For people without RLS ferritin can be from about 30 to about 500.

Traditionally ferritin greater than 30 was considered “normal” but some crude research was misinterpreted to prove that ferritin needed to be above 100 for RLS patients.

Now it is accepted that ferritin needs to be at different levels for different RLS patients and that some patients are helped by ferritin levels above 300.

It is now considered that first line of attack should be to increase the ferritin level to at about 300.
I have had to talk to many GPs to get a referral for an iron infusion to raise my ferrition level.

The raising of the ferritin level is not 100% effective but the only way to determine effectiveness in a particular patient is to try raising it.

There is no recognised way to predict the effect of raising the ferritin level.

The upper limit of the “normal” range of ferritin according to the pathology report from Melbourne Pathology is 500 so the suggested 300 is safe.
g) There are non-drug treatments that have beneficial effects but there doesn’t seem to be any system in place to gather these together and promulgate them and arrange trials to determine their effectiveness.

For example the good effect of the Monash University FODMAP diet, which has been found to benefit quite a few people.

Adequate trials are difficult to arrange for a long term diet trial, but that doesn’t mean there should be no research into this.
I am following a low FODMAP diet and I now sleep many hours, most nights and my brain works much better.

As is usual with treatments for the symptoms of RLS there are also a significant number of people who are not helped by the FODMAP diet.
4) Education, training and professional development available to healthcare workers in the diagnosis, treatment and management of individuals experiencing inadequate sleep and sleep disorders; NO Comment 5) 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; At the time I didn’t recognise the serious effect the RLS was having on my ability to work or even that I was suffering from a disease.
Even if I had, I doubt if my employer would have accepted “lack of sleep” as a reason for sick leave.

I would not have been willing to ask my doctor for such a certificate because there was a story going around that if you told your doctor that you were exhausted because of inability to sleep then the doctor would report me and my driver’s licence would be cancelled or suspended.

I couldn’t risk losing my job.

6) Current national research and investment into sleep health and sleeping disorders.
No Comment Inquiry into Sleep Health Awareness in AustraliaSubmission 107 Appendix 1 Restless Legs Syndrome (RLS) is a major burden on healthcare budgets in Europe September 23, 2017 Daragh Bogan, RLS-UK Chair A new report from the European Brain Council reveals poor diagnosis and treatment of Restless Legs Syndrome which makes it one of the most costly neurological disorders in Europe.
Restless Legs Syndrome (RLS) is a serious neurological disorder which has a high prevalence but is very often not recognized or even diagnosed as a disease, leading to delayed diagnosis and/or wrong treatment.

This, in turn, brings unnecessary suffering to patients, a significant cost to healthcare budgets in Europe and costs to wider society.

Frequently, RLS is not diagnosed due to lack of knowledge among healthcare professionals, and patients are left with no option but to suffer.
Equally concerning is the frequency of misdiagnosis, where patients are prescribed incorrect and inappropriate therapies.

The Value of Treatment for Brain Disorders in Europe study, conducted by the European Brain Council (EBC), the European Academy of Neurology (EAN), the European RLS Patients Alliance (EARLS) and the European RLS Study Group (EURLSSG), in consultation with a team of researchers and experts from the London School of Economics, discovered that the treatment gap for RLS is very high.
The total cost of poor diagnosis and treatment of RLS in the countries analysed (Germany, Italy and France) is significantly higher than the combined cost of Parkinson’s disease, Multiple Sclerosis and Epilepsy in these countries, partially due to the high prevalence of RLS.

The report highlights the importance of early detection and intervention, and the urgent need for proper education of healthcare professionals about RLS.
The report also highlights the need for research into the cause(s) of RLS and for new treatment pathways to be identified to reduce patient suffering.

The European Union spends just over three euro per year, per patient, on brain research, and access to treatment in many member states is getting worse, not better.

According to an analysis carried on in 2010, neurological and mental disorders affect 165 million Europeans, with an overall cost of about €800 billion per ar.
The Value of Treatment for Brain disorders in Europe study covered a range of mental and neurological disorders among which Schizophrenia, Alzheimer’s disease, Headache, Multiple Sclerosis, Normal Pressure Hydrocephalus, Stroke, Parkinson’s disease, Epilepsy and Restless Legs Syndrome, and highlighted the full cost of unmet healthcare needs, recommending new investment in research, earlier detections and interventions and better treatment for neurological disorders.
Visit the European Brain Council website for more information CREDITS: EARLS, EURLSSG & EAN Inquiry into Sleep Health Awareness in AustraliaSubmission 107 Appendix 2 Sources of information.

irlssg.org International RLS Study group.

https://www.rls-uk.org/ The director of the RLS-UK foundation administers a popular public forum about RLS called It is at HealthUnlocked forum https://healthunlocked.com/rlsuk/posts Inquiry into Sleep Health Awareness in AustraliaSubmission 107