Mental illness, medication, and the spiralling cost of being well

by Guest Hoyden on May 19, 2009

in Life, disability, medicine, social justice

Please again welcome guest poster Hexy! This post is cross-posted at her blog Hexpletive. Hexy is a rabbit-loving, sex working, long-winded ranting, non-neurotypical, queer, nerdy, vegetarian, Indigenous Australian blogger who seems to collect labels. She really hates writing introductory paragraphs about herself.

The occasional debate about non-neurotypicality/madness/mental illness and autonomy/non-forced medication compliance pops up in the little slice of the blogosphere I have time to pay attention to. Often, it’s very detached and academic. The people who have not personally been through the psychiatric system, or who have only had to dip a toe or two into it, tend to argue with extremes: either the psychotic mental patient who is a danger to themselves and others, or the victim of the psychiatric system who is tied to a bench and jabbed full of god-knows-what by men in white jackets. Even those of us who have spent year after exhausting year navigating that system tend to fall into the trap of utilising these extremes, when our own perspectives and experience fail to win anyone over.

Those who argue against patient autonomy, in my experience, fit into two camps: those who don’t realise that that is what they’re actually doing when they argue against the right of a person with mental illness to refuse medication and treatment, and those who quite simply think that people with mental illness have sacrificed their right to autonomy through illness (and as often tacked to the end, “through no fault of their own”). Whilst both of these camps can include people who have either experienced some degree of mental illness themselves or who have seen loved ones battle with internal demons, it is those to whom these debates are purely theoretical who are the targets of this post.

I realise that at first glance, the issue of whether or not people with serious mental illness should “be able” to reject medication can seem like a bit of a no brainer. The medication makes you better, right? Mental illness is a pile of no fun, that can seriously fuck you up or even kill you, right? And no one wants to see a loved one go through the hell that mental illness can be, or the multitude of spin-off horrors that it can prompt. But even for those of us who are compliant, who have had good luck with medication and who choose to continue taking it, there can be spiralling costs that can seem to outweigh the benefits. For some, those costs may simply be greater than what they perceive the benefits to be, particularly if they have not found “the right” medication for them… or if it doesn’t exist.

But! I’ve gotten sidetracked. I didn’t start this post to lecture anyone, or to crack open arguments that have been closed. I started it to show you something.

Apologies for the shitty camera phone photo

That’s a day in the life of medication, hexy-wise. Some of them I take in the morning, some at night, some throughout the day. The pile is actually a fair bit smaller than it’s been at various other times, as I no longer need to take a mood stabiliser. (A shame, they’re purple and really would have jazzed up the pic)

So, what’s in the daily cocktail for hexy?

The little blue one? The contraceptive pill. Not really all that significant to this discussion, although one of it’s many purposes is controlling the PMS-related mood triggers that can destabilise me monthly.

The green capsule? My latest antidepressant. “Latest” may seem an odd word to use there, but I’ll give you a little history.

I’ve been on almost every SSRI on the Australian market, and a few non-SSRI antidepressants. Some have worked, some haven’t. Those that worked, I’ve tended to grow immune to in a short time, necessitating withdrawal from them and starting again on a new and untested one. Thus far, the list looks something like this:

Zoloft: On it for six months. Might as well have been popping tic tacs. No effect, symptoms continued to escalate whilst taking the drug.

>Avanza: Minimal effects. Dosage increased to maximum, then I was taken off it. Symptoms continued to escalate whilst taking the drug.

Effexor: This one worked for about a year. However, my tolerance to it escalated astronomically, requiring a dosage increase every four weeks until I was eventually taking the maximum dose. I then had to come off it… and can assure everyone that Effexor’s dreadful reputation as the most horrible antidepressant to withdraw from is well deserved. It also made me jittery and clenchy, and I was more prone to manic episodes whilst on it.

Cipramil: Took a total of one pill. It sent me into a two-day long psychotic episode so severe that no one could get near enough to sedate me. Didn’t bother trying a second dose.

Aropax: Worked briefly, but I was needing to increase my dose every four weeks. It also made me jittery and clenchy to the point where I ended up with aching muscles. Weaned off it after less than a year.

Edronax: Increased aggression to dangerous levels. I actually yelled at the children of some random woman in the supermarket. I nearly punched a woman in a bottle-o for the great crime of walking past me, and vomited from pure rage once. My pshrink didn’t argue when I said I needed to stop taking it.

Luvox: Ah, Luvox. A SNRI. The closest I have to a success story. It controlled my depressive symptoms for nigh on four years, with a few dosage increases. Unfortunately, this year my brain finally figured out how to get around it, requiring me to abruptly withdraw from it and go on to the one I’m on now. I was in a pretty bad stated during the withdrawal, requiring time off work and some vigilant people around me.

Cymbalta: Current medication. Not yet at completely functional dose, but certainly doing something. Time will tell. I’m hopeful, as it’s also an SNRI.

That might be all of them. I suspect there’s a couple more, but my memory has failed me. Most of those medications within four years, though? With the associated side effects, withdrawal periods, and periods of completely uncontrolled depression when they didn’t work, or when I had to come off them, or when I was waiting (and praying, and trying to hold on) for a new one to kick in and start doing its thing? Not a great deal of fun, and not exactly high-functioning hexy.

The thing is, this is not exactly an unusual experience for someone with severe depression, particularly when it’s part of a complex diagnosis. The four years of being unable to work or take care of myself because nothing was working, the unmanageable side effects ranging from real, physical pain to periods of screaming-at-the-sky level crazy to mania and psychosis, the odds of the medication making my symptoms worse, the brief spots of relief punctuated by the news that my brain had “done that thing again!” and that I’d have to go through drug withdrawal whilst being monitored as a high-risk suicide threat? That’s all part and parcel of what “taking your medication” can mean when talking about psychiatric medicine and mental illness.

Moving on. The two big matching white ones are my antipsychotic. In one sense, I’m extremely lucky: the first antipsychotic I was trialled on began to work, and has worked ever since. I’ve been on it for seven years now. The dosage has been adjusted up, then down, then up again, then down again, and will probably need to go up and down a few more times in future. That medication is the one that plays the biggest role in keeping me functional. It controls my schizoid symptoms quite well, excepting when I’m sent into a schizoid state by a manic or depressive episode. It makes me sleep, which is vital to me functioning comfortably AND to me participating in a world set up around schedules and business hours. It’s got a bad side, though. It slows down my thinking, squashes my creativity, and prevents me from playing music or engaging with mathematics the way I used to. It’s also caused me some physical problems, and those problems are my biggest argument against mandatory medication.

You see those other pills, that I haven’t mentioned yet? The little yellow oval one, the little round white one, and the three medium sized white ones? Those are all medications I take to deal with permanent and potentially debilitating side effects and secondary conditions produced by my antipsychotic. They are all to treat serious conditions that I only have because of that compliance, because I’ve been dutifully taking my crazy-meds every day for the last seven years.

The little yellow one was the first to be added. It’s to treat the reflux I now have to deal with. Taking medication every night for five years (at the time it was prescribed) had damaged the sphincter at the top of my stomach and increased the acidity of my stomach itself. The pain when the reflux flared up was indescribable. It sounds silly to say that for someone so common and simple as reflux, but it is honestly the greatest pain I can remember enduring. I would end up curled up in the foetal position, clutching at my swollen abdomen, bawling my eyes out, and completely unable to tell why I was hurting. Until the docs figured it out, I was forced to limit my food intake to those few, bland foods that didn’t set it off… and then even those stopped working. Still, it’s fairly simple: as long as I keep taking the pills, my stomach behaves itself aside from the occasional flareup. That’s a model I’m already used to.

The three white ones were added recently. They’re diaformin, which is a treatment for insulin resistance and type 2 diabetes. These do run in one side of my family, but no-one in my family can remember anyone ever developing diabetes before the age of fifty. Type 2 diabetes, though, is a common long term side effect of my antipsychotic. Thanks to taking that drug, and needing to continue to take it, I now have insulin resistance, and am lining up to deal with full blown diabetes far earlier than I should have to worry about it. The insulin resistance made me gain a lot of weight, and has changed my weight distribution to the point where my body is an entirely different shape to what I’m used to. Vanity aside, this has ramifications for my work. It has also increased the concentration difficulties I already have, and that are already exacerbated by the medications themselves. It means that I can’t eat high-carb meals, ever, because I pass out immediately after eating them. I’ve had to leave parties because I’ve been literally about to fall asleep at the table after eating a burrito, or some yum cha. On top of all that, it increased my depressive symptoms, something that’s extremely dangerous for someone with my diagnosis. That leaves the little white one. That’s the newest, added a little over a month ago, and the jury is still out on whether it needs to be joined by another little white pill. It’s a synthetic thyroid hormone, and it’s been added because over the past year, my antipsychotic has succeeded in causing hypothyroidism. It’s stopping my thyroid gland from doing what it’s supposed to do. This is adding to the weight gain, lethargy and cognitive issues, as well as contributing to depression. My hair has thinned, and my capacity to handle being cold has diminished. I don’t know yet if the dosage needs to be increased to reach an effective level, but I’m yet to notice any change other than a slightly increased heart rate.

I will be on these three additional medications, and possibly the same antipsychotic, for the rest of my life. It’s only been seven years, and I’m already dealing with a fairly heavy batch of “long term” side effects. I can’t even begin to speculate about what state my body is going to be in after fifteen years on the drug, or twenty.

It’s also worth noting that, significantly for people with disabilities, none of these medications are free. I’m lucky enough to live in Australia, and while the PBS isn’t perfect, it does mean that I don’t pay more than $38 for any of my medications. However, $38 per medication, per month, does add up, and each additional medication I need to add stretches my budget a little further. I’m up to six. The diabetic drug and the stomach angst drug are slightly cheaper than the others, but they also don’t last a full month. I’m shelling out over $200 a month on medication, and I don’t earn enough for that to not be an issue. Yes, it’s cheaper if you’re on a disability or sickness payment (between $4 and $8 a prescription) but believe me when I say that the provisos put in place by Centrelink for those benefits are fucking difficult to stick to when you’re struggling with mental illness. Especially if you don’t have a friend, spouse, carer or family member helping out.

On top of my medication costs, I now have regular massive dental bills to pay… and that is not covered by Medicare. How is the dentist relevant? Well, despite having excellent teeth that never even needed a filling until I was 19, they’ve been rotting out of my head in recent years. My antipsychotic reduces my saliva production, and it turns out that saliva is pretty important in keeping teeth healthy, functional, and not full of holes.

That’s just a small sample of the issues inherent to the idea that people with mental illness should “just take their meds”, or be medicated against their wishes. Psychiatric medications have improved a lot in recent years, but they’re still hit and miss… and a lot of them are still as blunt as a brick in a sock. “Just take your meds” often translates into “just take that medication every day for the rest of your life, despite the massively unpleasant side effects, some of which will drastically shorten your life expectancy and require medication themselves. And that’s AFTER you jump through all the hoops to find a medication that actually does something for you? Oh, and did we mention this is coming out of your paycheck? Aren’t you glad you got functional enough to take that low-paying job?”

I still choose to take the medication. Many, many people with mental illness, whose allotment of extra shit is equal to or bigger than mine, do so. I’ve met people who can’t work because they can’t stop the uncontrollable drooling brought on by their antipsychotics, but who still take the antipsychotic. I’ve met people who, like me, have lost even the remnants of their old talents and the way they used to think… but who still take the medication.

Significantly, I’ve met people who will declare themselves to no longer need the medication when they are manic or mad, but whose sober and rational assessment is that they do. These people often have their own procedures put in place to help them stay on the meds.

For many of us, the only encouragement we need to go through this particular hell and watch the side effects and negative consequences stack up is the promise that just maybe, these pills will stop us going through the far worse hells our brains can produce.

For others, though… sometimes the decision to opt out of the medication game is a sensible, rational and informed decision. Sometimes the benefits of the medication simply don’t outweigh the costs.

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{ 46 comments }

1
animeg May 19, 2009 at 10:48 pm

I want to say something, but it’s not going to be very interesting or useful. Anyway, it all depends. For some people, they can opt out, but for others, no meds=costly hospital stay. At the hospital, I saw a lot of folks coming back b/c they ran out.

I only have mild GAD so I could go without meds, but I prefer to not to.

2
Helen May 19, 2009 at 10:55 pm

Sorry Hexy, to rudely post just minutes after you. The leopard post was on top when I went into the write-post window, you must have been getting ready to publish. OK enough meta – I’ll get out of your way!
Helen

3
hexy May 19, 2009 at 11:26 pm

Animeg: Yes, I’m in that category. I’ve had lengthy hospital stays, and going off my meds would land me right back in there.

If I had no private health insurance, money, or an existing relationship with a psychiatrist in the hospital? I could go off my meds as many times as I liked and be as crazy as a loon, but I wouldn’t end up in hospital. In-patient psychiatric treatment is very much a privilege in this country.

That option should be available to more people, and they should have the option of taking it.

4
hexy May 19, 2009 at 11:30 pm

Helen: No problem :)

5
hexy May 19, 2009 at 11:34 pm

“That option should be available to more people, and they should have the option of taking it.”

Sorry, that was really unclear.

I meant that the option of a hospital stay should be economically available to everyone, and that “opting out” of meds leading to a hospital stay should be considered an option people have the right to take.

Everyone is capable of opting out of medication. Some have very negative results from doing so, but that doesn’t mean they’re incapable of choosing not to be medicated.

6
animeg May 20, 2009 at 1:01 am

In the US[I am thinking hexy lives in Australia, if I am wrong, tell me], you can be committed if you’re a danger to yourself or others. However, hospital stays are usually less than a week, yet they are very expensive. We also seem to have overcrowding problems at our hospitals sometimes.

I’m not saying people shouldn’t be allowed to do that, I’m just saying that for a lot of people it’s more feasible to take the meds and deal with the side effects than go to the hospital, since many jobs won’t let you off for that many hospital stays, and disability can take a long time coming through. [and doesn't pay enough anyway]

7
caitlinate May 20, 2009 at 1:56 am

Thank you.

8
Jo Tamar May 20, 2009 at 9:09 am

Another “thank you” from me.

9
hexy May 20, 2009 at 9:13 am

Animeg: Yes, the same applies here. If you pose an active threat to yourself or someone else, you can be “scheduled” and forcibly hospitalised for three to five days. Which might as well be nothing when it comes to treating mental illness, but the public mental health system really only concerns itself with crisis.

And I’m not arguing with your statement about it being more feasible for most people to take medication. I’m simply pointing out that there are valid reasons to reject the medication, and that people should never have the right to refuse medication taken from them.

hexy’s last blog post..Mental illness, medication, and the spiralling cost of being well

10
Mindy May 20, 2009 at 9:31 am

Thank you Hexy. I had never even considered the toll that medication can take on your body, much less on your wallet.

11
nephronnelly.blogspot.com/ May 20, 2009 at 9:34 am

Hexy, wow. I’m very sorry to hear your story. I’ve been through, still going through, something similar. I had severe depression and anxiety for many years and was on high-dose anti-depressants and benzos. In my case it has turned out to be entirely caused by other things.

I had the same problem with the synthetic thyroid medication. Didn’t work very well at all. I am now taking “natural” thyroid hormone, which is desiccated thyroid from pigs. It’s about as natural as codeine, as it’s processed and standardised, but it works a hell of a lot better for many people as it has T4 and T3, the active thyroid hormone. It costs about $30 a month from a compounding chemist which is around the same as a PBS prescription but unforunately there’s no concessions on it. It’s not a popular medication, most doctors either haven’t heard of it or think it’s ineffective and will give you mad pig disease which it isn’t and it won’t, it’s been used safely for nearly a hundred years and quality is even better these days. I’m sending myself broke to see a doctor who prescribes it and paying for the full-price thyroid. :( But I can’t go without it, the synthetic stuff just does. not. work. for me. If I don’t take it I can hardly get out of bed and get into deep depression with suicidal ideation. I was always too tired and unmotivated to act on that, hah the irony.

Aside from the hypothyroidism, I developed these symptoms which worried me even more, like which looked like early onset dementia, like memory loss, aphasia, loss of cognitive skills, etc. Turned out it was low vitamin B12, which my doctor (not my thyroid doctor) said I “shouldn’t worry about, just eat more meat”. I researched it myself, and figured it out, and fortunately another doctor read the research I printed out. I now have to have a B12 injection every week and slowly the symptoms are going but I’m scared I suffered permanent neurological damange. Please make sure they check your B12. The lab range is too low in Australia. Neurological damage can begin at 350, not the 120 which is the lower limit in Australia. I don’t know why it is like this. You said you are taking medication to treat reflux – those are notorious for causing B12 deficiency because they inhibit production of intrinsic factor. We can’t win.

[I also turned out to have bloody well Celiac disease, which also causes three billion annoying-to-very-serious problems.]

The medical system seems terribly broken. Especially when it comes to mental illness, and especially when it’s a woman, and even more so when she’s fat. I had my health problems dismissed as just being a neurotic woman or a fat woman. And I am so, so angry about it for everyone who has had to go through anything like this. It is infuriating beyond words. It took me so much effort just to figure out what the hell was up with me, when if certain doctors has just paid attention…gah. Fuck it. I don’t feel like I can Rage Against The System all the time.

(I guess if anyone wants to contact me they can leave a comment through my blog (no posts yet), they’re moderated.)

12
rayedish May 20, 2009 at 9:51 am

Thank you for this Hexy. The effort that it took to write and share such a personal post is really appreciated.

When I was a child my uncle’s schizophrenia was kept hidden from us and years later when I was sitting in a psychology lecture I realised that his trembling (that my younger self had thought was Parkinsons disease) was actually a side effect of his medication. The last years of his life were hard as he was shunted between hospitals and his parent’s house. This post has given me a greater understanding of the difficulties, that my grandparents and uncle (and everyone else who lives are touched by mental illness) faced/face. Thanks again.

13
Fine May 20, 2009 at 10:04 am

A great article Hexy. I have a bit of understanding of these issues and you’ve just added a whole heap more. People seem to think mental illness can be managed with one convenient pill which fits all, but it can’t. There was, what I thought, was a really good series with Stephen Fry on the ABC a couple of months ago. He’s bipolar and went around talking to people with the same illness about how they managed it. Everyone had different answers.

14
Liam May 20, 2009 at 10:17 am

Thanks Hexy. Keep well.

15
hexy May 20, 2009 at 10:20 am

Mindy: I think it’s one of those things that doesn’t occur to most people unless they have reason to think of it. I certainly had no idea before it became relevant to me. Stigma keeps so many people from talking about their experiences with mental illness, and that does cover medication as well.

rayedish: Thank you :) And yeah, I’m familiar with the tremors. The mood stabiliser I mentioned briefly gave me visible tremors so severe I couldn’t fill cups all the way or I’d spill the liquid. It’s not only inconvenient, it’s embarrassing.

Fine: Exactly! It’s not a simple question of take the pill = sane, vs don’t take the pill = crazy. And I’ve heard really good things about that Stephen Fry series, I should check it out.

hexy’s last blog post..Mental illness, medication, and the spiralling cost of being well

16
hexy May 20, 2009 at 10:21 am

Liam: I do my best :)

hexy’s last blog post..Mental illness, medication, and the spiralling cost of being well

17
fuckpoliteness May 20, 2009 at 10:49 am

Hexy, thank you.

18
Liam May 20, 2009 at 10:52 am

Hexy, I’m sure. And do check out the Stephen Fry series Fine mentioned, it’s incredibly good TV.

19
hexy May 20, 2009 at 11:29 am

Nephronnelly: I do take a B12 supplement, amongst a bunch of other vitamins. I was already quite careful about my B12 levels, as I’m a vegetarian, but I stepped it up a little when I was put on my last antidepressant. I also take a magnesium supplement, as magnesium is a mild mood stabiliser. It’s absolutely important to keep an eye on one’s diet when managing mental illness, as much as the “just try diet and exercise” types make me want to stab them :)

Thanks for the tip about animal-derived thyroid. It’ s something I’d prefer to avoid, but I’ll keep it in mind in case the synthetic version fails me.

20
Casey May 20, 2009 at 11:36 am

Hexy, what a story. You slapped me out of my bullshit little worries and straight into some real things to think about. Thank you. But I just wanted to mention something about this:

“On top of my medication costs, I now have regular massive dental bills to pay… and that is not covered by Medicare. How is the dentist relevant? Well, despite having excellent teeth that never even needed a filling until I was 19, they’ve been rotting out of my head in recent years. My antipsychotic reduces my saliva production, and it turns out that saliva is pretty important in keeping teeth healthy, functional, and not full of holes. ”

Its too late for the work already done, and I dont know if you know, and maybe you do and maybe you have used it, but there is currently in place a medicare dental scheme for sufferers of chronic illness which gives those eligible $4250 worth of dental treatment over a 2 year period. Labor wanted to dump it but the Senate rejected it so its still in place – to date. If you havent taken advantage of it, I urge you to do so – as from what you ‘ve detailed here – you more than qualify for it. Ask your GP, he will get it in place for you then try and find a dentist which does not charge a copayment. They are about. Good luck.

21
hexy May 20, 2009 at 11:39 am

Casey: Yes, I have heard of this scheme, and am planning on asking my GP about it when I see him next. I didn’t know Labor was trying to get rid of it, though… I’ll have to speed that along! Thanks!

22
Tamala May 20, 2009 at 11:43 am

I hope I don’t come off as condescending or anything like that Hexy but I have to say stories like yours scare the shit out of me.

Mostly ’cause if it weren’t for a slight scrambling of my genes I’d probably be in a similar situation to you. My birthmother was apparently also on anti-psychotics and antidepressants when she accidentally killed herself and I heard all sorts of horror stories about both her unmedicated life and her medicated life (And like you they both seemed to have their costs) when I was a teenager everyone who knew the woman kept on commenting on my similarity to her and I kept being afraid I’d have to step on that rollercoaster myself.

I guess in short, I’m trying to say empthetically rather than pityingly: I’m sorry you have to put up with all that shit.

23
hexy May 20, 2009 at 11:52 am

Tamala: The sad bit is that I’m really very lucky. It took a while, but my medication balance makes me more or less functional most of the time, and when I have a bad patch it’s generally understood that I will come out of it. I’ve already outlived expectations: people with my diagnosis have a ridiculously high suicide rate. And the side effects are awful, but none of the ones I deal with now stop me working or socialising.

I’m sorry to hear about your birth mother, and thank you for the empathy.

24
lilacsigil.livejournal.com/ May 20, 2009 at 1:27 pm

I’ve commented over on your blog, but this is the medicare dental scheme mentioned above. It’s extremely difficult to get into (deliberately so) and I’m not sure if you’d currently be covered – though if you develop diabetes, you could be. You have to already be in the chronic illness scheme (covers costs for multi-disciplinary care, also hard to get into) to apply.

25
hexy May 20, 2009 at 2:19 pm

My mental illness does count as a chronic illness, and I am treated by multiple health care professionals. I don’t have one of the plans they mention, though… I’ll have to see what my GP thinks. Thanks for the link!

26
Casey May 20, 2009 at 6:15 pm

Hexy. Its unbelievable how easy it is to get it.. Your GP is the one who puts in place the health care plans. Its all up to her/him. The “team” they refer to can be anyone. There is nothing complex about it. The GP does it by computer (if he is online) and just puts the name of the specialist in, lists the problems and the plan for improving everything and that is a health care plan. Under the current system and an accommodating GP anyone can get this do you believe it?. One guy I knew walked into the dental surgery with a chronic health care plan for his “obesity”. He had a pot belly!!. The health care team in his case were 1) a dietician and b) the dentist he was referred to!! Inquiries to Medicare revealed that if the GP put the health care plans in place there was nothing wrong with it. The Dentist could complain, but she/he needed to be very careful about the claims being made regarding the GP. It really can be a bit of a rort. It is not means tested and this here:

“A chronic medical condition is one that has been or is likely to be present for at least six months. It may include, but is not limited to, conditions such as asthma, cancer, cardiovascular illness, diabetes mellitus, arthritis, mental illness, musculoskeletal conditions and stroke.”

is so vague and wide ranging that it really is open to being rorted from what I have seen. Further, under this system , very rich people can access it as well as people who are not very sick. It is not means tested. Furthermore, it is quite possible to have cosmetic work (composite resin work and crowns but not veneers and implants ) quite easily under the current system as it does not ask for details, just item numbers it approves.

You, howevr, who is actually a chronic illness sufferer with illnesses that actually impact your dental health, will have absolutely no worries and its a couple of key strokes into a computer by your GP.

27
Lauredhel May 20, 2009 at 6:32 pm

The person has to not just have a chronic medical condition, but also have “complex care needs” (with at least three disciplines of healthcare providers involved), qualify for a care plan under EPC (Enhanced Primary Care) guidelines, and the GP needs to attest that their oral health is impacting (or likely to impact) upon their general health. Hexy would likely very easily qualify under these criteria, I’m guessing, but a lot of other people who want to claim it might not – even if their dental health needs are pressing. Our dental system sucks.

28
lilacsigil.livejournal.com/ May 20, 2009 at 7:05 pm

It’s difficult to qualify in rural areas (where I live) because the available cross-disciplinary carers are a podiatrist (once a week), a physiotherapist (once a week) and a dietician/diabetes educator (once a fortnight) plus a speech therapist who only sees children. In fact, I know only one person who qualified. I hadn’t thought that it might be easier in a city, but of course it would!

29
Casey May 20, 2009 at 7:16 pm

Lauredhel when Im not doing a Phd I work in dentistry. So the Medicare forms that we get from the GP, are the ones I process and look at. Im also a carer for my mum so Ive seen it put in place :

You are right when you say you need three disciplines of health care providers. The guidlines state;

“… which includes their GP and at least two other health care providers”

These three therefore can be anything like:

1. the GP,
2. any specialist inc dieticians, gastros, shrinks, cardiologists, etc, etc and
3. and it can be the dentist himself.

The GP makes up the plans. I know this because as a carer for my mother, I got one for her and I watched the Doctor do it online and it went straight to medicare via the internet with the info coming out of her file. He did it all. In my mothers case she has a myriad of probs which impact her oral health so it was entirely appropriate. However, from my surgery work experience, if the doctor is prepared to attest that the illnesses impact on oral health and is prepared to not be, strictly speaking, exactly correct about that or stretch it a little cause he has a long relationship with his patient, then its easy. IMO It needs tightening up so that people like Hexy are the ones that get it and not anyone who actually has the money to pay for it or whose “chronic illnesses” and attesting GPs are being less than stringent about the interpretations.

Here is the history of the whole thing and the pros and cons for anyone interested.

http://www.aph.gov.au/LIBRARY/Pubs/bn/2008-09/Dental_Benefits.htm#uptake

30
Helen May 20, 2009 at 8:15 pm

Oh, and did we mention this is coming out of your paycheck? Aren’t you glad you got functional enough to take that low-paying job?”…

Aaaaargh. ((((Hexy))))

31
hexy May 20, 2009 at 9:09 pm

Re: The dentist thing… well, I’ve got my GP, my pshrink, and I gather my pharmacist counts. As I said, I’ll give it a try. Getting a bunch of free dental care would set my mind at ease on one front for at least a while! Thanks for chiming in, everyone.

Casey: It needs tightening up so that people like Hexy are the ones that get it and not anyone who actually has the money to pay for it or whose “chronic illnesses” and attesting GPs are being less than stringent about the interpretations.

When requirements are lax, people who don’t need the service inevitably slip through. When requirements are strict, people who DO need the service inevitably miss out. I guess it’s up to each person to decide which of those they think is the greater problem.

Helen: Thank you. :) And I imagine the related, one-day-to-be-written post about why the sex industry is a boon for some people with disabilities and chronic illness with be far more controversial.

hexy’s last blog post..Mental illness, medication, and the spiralling cost of being well

32
Lauredhel May 20, 2009 at 9:43 pm

These three therefore can be anything like:

1. the GP,
2. any specialist inc dieticians, gastros, shrinks, cardiologists, etc, etc and
3. and it can be the dentist himself.

Category (2) is quite a bit broader than what most people understand by “specialists” – it includes a very wide variety of healthcare providers including such providers as physiotherapists, diabetes educators, Aboriginal health workers, audiologists, osteopaths, and speech therapists.

I am very aware of the way in which the plans are drawn up because I’ve drawn them up. I don’t believe they need to be “tightened” in the slightest; on the contrary, I believe this model of dental funding needs to be completely abandoned, and a proper comprehensive nationwide universal dental insurance scheme introduced.

33
shadesofblue May 20, 2009 at 10:26 pm

The medical system seems to be an all or nothing situation, really. Shut up, take your meds and be a good little boy/girl, or dont take them and whatever happens is your own fault.
Can’t cope with the tremors, rapid weight gain, loss of libido, anhedonia, loss of taste (or even worse, robot-butt-mouth) lack of sleep, extreme nightmares, hyper or hypo salivating, incessant yawning, slurred speech, memory loss, cognitive impairment or brain zaps (and that’s just my list of experienced symptoms, there’s a lot more out there) and want to go off your meds? Well obviously you dont *want* to be well, do you?

We should make a giant ‘my meds’ collage.

34
hexy May 20, 2009 at 10:34 pm

Heh. Robot butt mouth.

I am so down with My Meds collage.

hexy’s last blog post..Mental illness, medication, and the spiralling cost of being well

35
Casey May 20, 2009 at 10:44 pm

“a proper comprehensive nationwide universal dental insurance scheme introduced.”

Im interesed in what you think of this report on a possible replacement for the scheme?

http://www.ada.org.au/App_CmsLib/Media/Lib/0902/M157070_v1_633706508482830000.pdf

36
WildlyParenthetical May 20, 2009 at 11:04 pm

Hexy, you rock; thanks so much for this post. The point that medication isn’t anywhere near as precise as it is imagined to be, in that reducing any given symptom goes along with various side-effect, is just such an important one. Medicine can do amazing things; but it doesn’t *only* do amazing things. I’m also sorry it can be such a rough ride (hip-pocket-wise and body-wise, as well as the work of continually negotiating (with) non-NT-ness and medications and side-effects and rising tolerances and stigma and so on), however lucky you might be on the scale of things!

I am *very* much looking forward to your sex work post, btw… :-)

37
hexy May 20, 2009 at 11:08 pm

WP: I’m glad to hear it! It’s going to take a bit more courage than this one, though…

And thank you for the positive feedback. Thank you ALL, actually… the response to this post has been far lovelier than I expected.

38
Casey May 20, 2009 at 11:24 pm

Yes, Hexy. Ditto. And pardon the diversion onto matters dental. Im just passionate that the people who need it get it. Lauredhel is right. We should have a universal dental scheme but in the meanwhile this is the best we have. When I read your post, I just became so upset that you should have exhorbitant dental bills, on top of the other medical costs. I look forward to more of your posts as well!

39
hexy May 20, 2009 at 11:26 pm

When I read your post, I just became so upset that you should have exhorbitant dental bills, on top of the other medical costs.

Aw. :) Thank you, that’s so sweet. I didn’t mind your diversion at all, it’s valuable information that should be out there.

40
WildlyParenthetical May 21, 2009 at 12:41 am

Yeah, I’m sure it will take lotsa courage. Hence en-courage-ment ;-) Just offering a teensy safety-net of an appreciative audient, FWIW (singular of audience borrowed from my lil sister, at the age of about 7. It still makes me smile).

41
hexy May 21, 2009 at 12:46 am

Audient? That’s adorable :)

I’ll try and muster the courage to do it soon. I need to build up my spoons for coping with potential backlash first.

42
Jo Tamar May 21, 2009 at 8:33 am

Another word of encouragement re the sex work post. No pressure, but whenever you’re ready to write it, I’ll be ready (and very interested!) to read it :)

43
hexy May 21, 2009 at 10:20 am

All the interest in that post is certainly encouraging!

44
emailtoid.net/i/957549d6/… May 21, 2009 at 10:21 am

Just to add even though I know a couple have already mentioned.

The dental plan is ace. Also if you have a mental health plan they can easily swap it over to count dental too. My GP did that for me.

The dentist I’m with believes that it will proabbly be canceled towards end of June, so get in quick.

So far I’ve had two root canels and 5 fillings (and I’m only halfway through my sessions.)

45
sixtoedkitties.wordpress.com/ May 21, 2009 at 5:25 pm

Hexy I would back you up.

46
sixtoedkitties.wordpress.com/ May 21, 2009 at 5:27 pm

Depending on actual content of post…but on general idea, what you just said, I would.

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