And the winner is…..

In compliance with the terms and conditions of my recent competition, today is the day I am required to announce the winner. Sadly, I will not be announcing the winner.

Earlier this week I did have an initial consultation with the winner of the competition. During the health evaluation I took her blood pressure: it was higher than I would have liked. My winner has an autoimmune condition, antiphospholipid syndrome also known as Hughes syndrome. Exercising regularly is one of the treatment recommendations but this is also a condition that results in thickening of the circulating blood and carries a risk of blood clots.

As a result of our consultation and discussion, my winner made an appointment to see her GP and is now undergoing tests. Clearance to exercise has been revoked pending the medical investigations.

While on one hand I feel a little dejected that the situation has turned out this way, on the other hand I am very glad the competition led to the winner seeking the medical attention required.

Due to the situation and the timing, I will hold any further action until the medical investigations are completed and the winner has had time to consider what she would like to do. In my view this is the appropriate course of action given the unusual circumstances.

Chronic Illness Writings by Other Authors Plus a Book

While I strongly advocate exercise where at all possible, there are many other aspects to suffering from chronic conditions. Today I am sharing some of the non-exercise related writings I have been reading recently that I hope readers may find interesting and helpful. We are all on a road, treading a path – sharing our journeys can be very worthwhile. Also –  you deserve a break from my lengthy ramblings!

Sam Moss is a fellow Australian experiencing far greater disability than I am – we are at opposite ends of a very wide spectrum. Sam had a very successful, award-winning career until she was unexpectedly forced to medically retire.

Sam recently wrote a terrific article I highly recommend, Is Acceptance Just Resignation? Readers may remember the ‘A’ in the PACT pain management program I attended. The ‘A’ was for Acceptance. Sam draws a lovely distinction between acceptance and resignation. Sam builds on that article in a follow-up, Loves and Losses. I do like the 5 G Change Model.

The second piece of writing I am highlighting today is They’re called liars and malingerers because they face pain you can’t see by reporter Julie Power about a longtime Twitter co-follower. Andrew did not fall sick or inherit a condition like so many, he was the victim of a car accident. While many of us are able to at least produce blood tests, MRIs or other diagnostic test results to substantiate our situations, Andrew cannot and has suffered as the headline indicates. Some chronic condition patients suffer similarly, such as fibromyalgia patients. Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) used to be similar – I have a very dear friend who had CFS/ME back in the days when many still thought it was “all in the head”. Now research is proving it is very definitely real. Andrew’s experience has been complicated by the legal issues surrounding seeking compensation for his injuries, but the negativity he faces is something many with chronic diseases face.

Harmoni Raie is another Australian chronic illness patient who really struggled with the mental health aspects of learning to live this new spoonie life. Harmonie recently wrote, Change Begins With Us – Be A World Changer! which is uplifting.

When Doctors Don't Listen

Lastly, there is a book I spotted in the work library one day, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests. I am in the process of reading it and I am finding it extremely interesting. Although written in the context of the USA health system, there are lessons for Australian patients and Australia’s health system. It is written by doctors, expressing concern about the modern cookie-cutter, recipe approach to medicine. My doctors are all great, very good listeners. The fact I am reading this book must NOT be taken as a criticism of my own doctors, I am reading it out of interest!

Don’t give up on the exercise though! Call, text or email if you’d like to discuss how exercise may help you.

The Costs of Chronic Conditions

A Croakey article, “Out of Pocket Costs: a Critical Health Issue to Watch in 2018” floated past my Twitter stream this week.

It is clear that out of pocket costs are a significant health equity and public health concern; a 2014 report by the Grattan Institute stated that:

“High and rising out-of-pocket costs are one reason that a sizeable minority of people avoid health care. The impact is greater for people on low incomes, in rural areas and who have poorer health status and disabilities.”

The article also links to an online survey launched by the Consumers Health Forum of Australia, of which I am a member, “to find out more about the impact of out of pocket costs  to help inform its work on a new Ministerial advisory committee.” I encourage readers to complete the survey.

I completed the survey from a personal perspective. One of the first questions was were the out-of-pocket expenses incurred in or out of hospital and the survey branched based on your response. I made the comment (in the appropriate box) that this was not representative of the ever increasing number of the population suffering chronic conditions. We have out-of-pocket expenses ALL the time, on a weekly, if not daily basis. We have those out-of-pocket expenses in and out of hospital. I am one of the healthiest chronic condition people around, but I often joke I work (my reduced hours) merely to pay my medical team and related costs. Those who are severely affected by their condition or conditions will have higher care needs and less ability to work: it becomes a vicious cycle. Can’t work, can’t afford to get well, not well, can’t work. Condition progression and the downward spiral continues.

Please note, overseas readers, I am writing ONLY of the Australian situation.

If a patient is in the public system and has a concession card (disability, pension, etc) they either see specialists through the public system or MAY be bulk-billed by private specialists if they are lucky (I was, one of my lovely doctors bulk-billed while I was unemployed and studying). Prescriptions for medications are filled at (current rate) $6.30 instead of the full PBS price. Woe betide you if you need anything not on the PBS, which I have at times. Most of my “standard” prescriptions run between $21.65 and around $32.00. As I have reduced my dosages, the ‘scripts last longer. For example, I started on 400 mg (two tablets) a day of one medication. I am now on half that. My thyroid medication has now been completely eliminated due to the radioactive iodine treatment, so that is a saving!

But there are other things we need that are not covered by anything. When I was first diagnosed back in late 2014, my Vitamin D level was “undetectable”. I must take a Vitamin D supplement every day, as ordered by my specialist. I am not allowed out of the house without sun protection, I have sun screen in my desk drawer, my gym bag, my swimming bag. A special one for my face. I am not allowed to use soap, I must moisturise – dermatologist specified products. These are out-of-pocket expenses that just get ignored by the powers that be, both medical and political.

Given I have chronic conditions, why do I stay in the private system? I have developed trusting and valued relationships with my treating specialists and I want to maintain that continuity of treatment. I do not want to see a different consultant every time I turn up at a public hospital consulting room. Yes, that is my choice: a choice I make for the benefit of my health. I believe anyone with a chronic condition should be assured of continuity of treating specialist, whether public or private. The peace of mind that comes with continuity is a massive psychological support.

I have endoscopies almost every year, sometimes more than once. My hospital excess is $500 a year, paid on the first admission. I’ve rarely paid anything else for hospital treatment: $117 once, I believe. I get the procedures done at a time that suits my schedule, usually within a week of the procedure being deemed necessary. To me, personally, that is worth $500 a year. Having said that, health insurance is about to go up, by twice as much as wages. I don’t know if I can continue to justify the expense. But if I drop it, not only do I lose the benefits I’ve just outlined, the tax man will hit me for not having private health insurance. We can’t win.

The Medicare Safety Net threshold helps with doctors’ bills, once I hit the threshold each year (and with seven specialists, I do). There is a PBS Safety Net too, but I never hit that as the medications I am on (luckily) are not horrendously expensive. I have a friend who, some years ago, was on a drug that was NOT on the PBS at that time. It cost her $3,600 every six weeks. She fought to have the drug placed on the PBS schedule. Like me, she has chronic conditions and reduced working hours. Her savings were somewhat depleted by trying to stay alive at the time.

Once you have a chronic condition you qualify for Health Care Plans. This can be physiotherapy, psychology etc. Speak to your GP to see what you may qualify for. Once on a Health Care Plan, a Medicare rebate is available for a limited number of services a year. While this is great, it certainly doesn’t cover the number of services that may be needed to stay well at an optimal level. Chronic conditions are DAMN HARD WORK to manage and, if you are really lucky, defeat. Also expensive.

Thankfully, MOST blood tests are also bulk-billed, although I have had blood tests that are not covered and have incurred out-of-pocket costs for blood tests. Most x-rays, CT scans, ultrasounds, MRIs etc are also covered, but again, not all.

None of the above takes into consideration the other costs of being healthy. Move, they say; get exercise, they say. Yes, I agree. I am a living, breathing advocate of exercise, for Movement As Medicine: Limber Up to Live Life. But you know what? I don’t come free, because I have my own medical costs to meet (plus I do like to eat). The gym costs money, swimming costs money – not just the fees, but the equipment as well. The pool staff are not overly impressed by naked swimmers. Then I have a variety of equipment at home:

  • two foam rollers
  • small hand weights
  • swiss ball
  • resistance bands
  • thera-bands
  • spikey massage balls.

None of those were free.

I also have my special kyBun shoes which I swear by. I believe they have contributed to the improvement in my back, allowing me to avoid radiofrequency facet joint denervation recently. I also think getting my thyroid under control, resulting in muscle strength returning, was another contributing factor. These shoes are not cheap, yet they are a vital part of my personal “get well, stay well” program. They are also better than my needing a walker or wheelchair.

kyBoot shoes

Food costs are not considered medical either, but if we want to get and stay healthy, we need to ensure we are eating the right balance of nutrients. Junk food is out. Lots of fresh green leafy vegetables and lean meat in most cases (there are exceptions). Fresh fruit. We have to watch the nutritional labels on everything and sometimes what is best for us is far from the cheapest.

If we do get ourselves healthy we are not a drain on the “public purse”. We stay off the Disability Pension, we use less medical services (prescriptions, x-rays, scans, Medicare rebate, hospital admissions, etc etc etc).

In my view it is definitely in the public interest to financial assist chronically ill patients to be the healthiest they can possibly be. That includes, if necessary, supporting their access to appropriate exercise, healthy foods, dietary supplements as recommended (e.g. my Vitamin D and fish oil). Get patients to a point where they able to regain quality of life and suitable employment, enable independence and self-sufficiency. Much cheaper to the community in the long run than a life on a pension AND, MORE IMPORTANTLY, so much more rewarding for the patient.

Out-of-pocket health costs are NOT just the difference between the doctors’ bills and the Medicare rebate or the prescription costs. There are so many other aspects to fighting chronic illness and winning.

Early intervention, early treatment, is paramount. Yet if people put off going to the doctor for a year or two, the disease can be merrily progressing. Some patients, if things are deteriorating slowly, tend to just get used to it until one day we reach a point of loss of functionality or pain that forces us to an emergency room or our GP. If the patient is in a rural area or is a low income patient, that delay is more likely. How much damage to our body has happened in that time? We may even put functional changes down to the aging process, as I did initially. Guess what, I was wrong.

I hope the new Ministerial advisory committee referred to above considers more than just the obvious. Will they?

How expensive is staying well for you? Are you prevented from doing what you need to by the cost? Please share.

EDIT Jan 28, 2018: Two other non-medical costs of chronic illness are:

  • the need for additional heating and or cooling – e.g. I am severely heat intolerant, symptom of one of my conditions, my air-con costs are therefore elevated AND as I have reduced working hours, I am home more often than a healthy person;
  • transport costs to and from the various service providers we all attend on a regular basis (physio, gym, pool, doctors, pharmacy, pain clinic – the list is extensive). This may be public transport fares or fuel for our car.

Yes, these are costs everyone has, but for those with chronic illness the costs can be increased considerably, thereby reducing the patient’s ability to afford other support that would assist them in condition management.