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Help for disability appeal (Australia) - ruled not fully treated

Discussion in 'Finances, Work, and Disability' started by purrsian, Jun 23, 2017.

  1. Valentijn

    Valentijn Senior Member

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    They're the ones claiming that GET and CBT are standard, safe, and effective treatments, so they should be providing solid evidence for those claims. Even the most highly spun CBT/GET trials show a minority improving (typically under 25%), and with little or no safety data. And there are no trials showing that CBT or GET results in any objective improvements in ME patients, like ability to work or become more active and functional.

    They don't know what they're talking about, and their suggestions are merely going to waste more money.
     
    Sea, Kati, Mel9 and 1 other person like this.
  2. allyann

    allyann Senior Member

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    You can find an advocacy group that services your area here: https://disabilityadvocacyfinder.dss.gov.au/disability/ndap/

    Also get in touch with Senator Scott Ludnam's or Senator Rachel Siewert's office. They are pushing the Federal government on these misguided decisions.

    Let us know how you go. I will also pm you some other helpful contacts.
     
    Sea, Valentijn and Hutan like this.
  3. Kati

    Kati Patient in training

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    Hi @purrsian I just wanted to offer my support during this stressful time, it makes no sense at all. Keep on fighting, and do not give up.
     
    MeSci likes this.
  4. Snow Leopard

    Snow Leopard Hibernating

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    Many people are knocked back the first time. I was knocked back the first time as my illness "had not stabilised".

    You can appeal and you will win.

    See a rheumatologist if you can, get their "I can't help the patient report", put in an appeal stating that
    (a) There are no affordable specialist clinics for CFS or ME in Australia
    (b) There is no evidence that CBT leads to recovery or improves ability to work in any study - the PACE trial results explicitly show that there was no difference between the groups and more people were on welfare after CBT or GET than before.
    (c) There is no evidence base to suggest that exercise physiologists can help - although they can show there are problems (2 day exercise test - but this severely impacts your short term health)

    Also, some Centrelink people have different opinions to the JCA contractors - on my recent review, they made a whole bunch of BS recommendations that were simply ignored by the Centrelink person.
     
    Last edited: Jun 25, 2017
    Sea, Valentijn and Sean like this.
  5. purrsian

    purrsian Senior Member

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    Thank you so much everyone for all of your input! My fiance was telling his sister and her husband about my ordeal and about what CBT is and they couldn't believe it would be a suggested treatment for me (they've seen me on bad days, so they know CFS is no walk in the park!).

    I've gathered up all the key info from this post so far into a document so I can go through it all bit by bit. I have 13 weeks to appeal, so thankfully I have a little while to get all my information together. Going to focus strongly on their definition of "fully treated and stabilized" to show that these treatments don't meet their own definitions.
     
  6. purrsian

    purrsian Senior Member

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    Well instead of getting the letter to inform me that my application didn't go through, I got a letter from an employment service stating that I have an appointment with them on July 6 and all the things I need to bring to the appointment! No one ever mentioned this to me previously, literally the first I've heard about anything like this, and I'm honestly not sure why when my application has been rejected anyway.

    I don't know why, but this has just really bothered me. If someone had discussed it with me, I could have explained that I am better off with us surviving just on my partner's crappy wage then to even attempt to find a part time job. I couldn't even attend part time college properly :(

    And now I don't know if cancelling the appointment will affect my appeal in anyway, as no one even spoke to me about what this is. I hope it won't, as I'll just be wasting their time.
     
    Ellie_Finesse, Sean and lafarfelue like this.
  7. Snow Leopard

    Snow Leopard Hibernating

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    If you are claiming newstart you need to attend that appointment. Otherwise you can ignore it, though you may want to get answers (if you can wait...) why you were referred.
     
    lafarfelue likes this.
  8. Alvin2

    Alvin2 If humans were rational...

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    If the day you go to the appointment you happen to have severe PEM its not your fault, if they have PEM friendly jobs they would be doing all of us a favour, any of us would love to make good money by not being able to fulfill the job requirements, taking many times more sick days then working days, taking more breaks then time spent working, going through periods (sometimes hours in my case) of delirium on company time, and not being able to be presentable during working hours. :thumbsup:
    These are all the accommodations an employer will have to provide, and you look forward to employers beating down your door with job offers ;)
     
    Last edited: Jun 28, 2017
  9. lafarfelue

    lafarfelue Senior Member

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    That sucks, I'm sorry Centrelink is being so crappy about this.

    Can you(or someone on your behalf) call to ask what the meeting is for? And depending on what it's for, for it to be rescheduled so you have time to collect more info etc? They should* honestly be reasonable about rescheduling if it's something where you need to have more evidence to 'defend' your case.
    (*this is Centrelink though, so hmm)

    It would probably be best to attend either way, so that they don't have anything on file for you saying that you opted out/'didn't complete' or similar. You could apply again down the track and be better armed (if you wanted, even though it may seem daunting), and could be sure that they'd have no other ammo to pull out against you then.
     
  10. purrsian

    purrsian Senior Member

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    Well now I've received a letter from Centrelink saying that I was rejected due to not meeting the 20pts on the impairment tables. No mention of not being fully treated, which is all the lady on the phone spoke about. Now I don't know which I was rejected for, or if it was both and thus I need to appeal both.

    So I try ringing Centrelink, which of course doesn't work! I can't even get through to the automated messages, I just get engaged sounds immediately. I'm probably going to have to go into a Centrelink office to speak to someone, as I haven't been able to get through on the phone for weeks now. I may go today, or I'll see if my mum can take me tomorrow if I don't feel I can make it on my own. Will ask for reasons for rejection in writing, if it's "not fully treated", "not 20 pts impairment" or both, and what the job appointment is for and if I need to go if I'm appealing their decision.

    Also I've contacted someone from ME/CFS Australia and will email/call him once I get this extra info from Centrelink to see what he suggests.

    Phew, so much to do, let's hope my brain handles it all lol
     
    Ellie_Finesse, Hutan and Valentijn like this.
  11. purrsian

    purrsian Senior Member

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    Oh and I've already teed up my mum to take me to the job appointment, so if Centrelink says I need to go despite appealing, I'll have some help :)

    And @Alvin2 I definitely look forward to all the job offers I'll be getting, I'm sure every employer would love an employee with a longer list of "can't do" than the list of "can do"! :lol: Last job was with my mum, so she paid me even when I didn't work - don't think anyone else will be doing that somehow lol
     
  12. purrsian

    purrsian Senior Member

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    Felt unexpectedly ok today, kind of, so I decided I should make the effort to get to Centrelink. And I did it! I was so happy with myself. Feeling physically bad but proud of myself as I wait for half an hour. Then the greeter lady comes up and tells me someone has looked at my details and said they don't deal with the disability stuff at the branches and I have to call the number on my letter :bang-head: I say I can't get through at all and it's constantly engaged, she just apologised and said to keep trying, it's all she can recommended...:bang-head::bang-head::bang-head: Was that emoticon made for people dealing with Centrelink, because it's certainly how it feels!

    If I continue to be unable to get through, I'll just call the complaints number and see if they suggest anything. Because if they can't, then I have a big complaint that I can't get the help I need. So now I'm drinking scotch and listening to loud angry music which makes me feel better, even though I'll crash soon. Worth it to sooth my angry feels :rolleyes:
     
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  13. purrsian

    purrsian Senior Member

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    I still have not appealed this decision and only have a few weeks left to be able to do so. I need to call up and tell them my appeal, which they will then type up, so I need to write it first as I'm always too brain fogged to be able to come up with anything off the top of my head. But I don't even know where to begin. It just feels like I'll be wasting more energy and emotions on a pointless endeavour. It makes me so angry and sad.
     
  14. Esther12

    Esther12 Senior Member

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    Sending you best wishes for it. Good luck. Sometimes I think it's part of their plan is to make you feel that the system is so against you and broken that it's hopeless. Just try to go through their processess one step at a time, and see where it leads to.
     
    Orla, purrsian, Hutan and 1 other person like this.
  15. Alvin2

    Alvin2 If humans were rational...

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    This is what they want, you to feel like you will fail so you don't try and they win.

    Start with a list of your symptoms then afterwards add how they prevent you from working if its not obvious. Be sure to include the being fogged and what that means. Talk about your physical symptoms, the mental ones and how they interact with each other if applicable. Make sure you explain that all are ME/CFS symptoms (they may not know cognitive symptoms are part of the disease). Don't worry about your list being in order, just make a list.

    Did you look into legal counsel, they will be able to help put this together as well.

    Finally this is a Canadian document but may give you some guidance. One thing i have come to realize is you don't throw every little thing you can at them, they will say who cares about hot/cold intolerance and sensitivity to light as mentioned in the document (wear warm clothes and sunglasses they will say). Also don't exaggerate and be precise. Focus on the major symptoms and explain how the uncommon symptoms keep you from working since they won't see ME/CFS very often.
    http://www.mefmaction.com/index.php?option=com_content&view=article&id=425&Itemid=364

    Finally mention treatments you have tried and what the results were so it looks like your trying to treat the ME/CFS (even though there is no treatment). Try to avoid getting into alternative medicine treatments unless they have helped immensely or have been shown deficient in testing since they will consider it nonsense otherwise.

    I know this sounds overwhelming, just go one step at a time

    Make a list
    Don't exaggerate
    Focus on the major symptoms that prevent work
    Get legal help if you have not already
    Read the PDF i posted
    Explain any symptoms in more detail if they are not well known by a layperson
    Mention treatments and effects they did or did not have (avoid alternative medicine)
    Apply a week before the deadline to give you some breathing room and to make sure they get it in the system before the deadline, especially if its mail based or may take time to get from person to computer system.
     
    Last edited: Sep 11, 2017
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  16. purrsian

    purrsian Senior Member

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    Thank you for the support @Esther12 and for your extra advice @Alvin2, have been reading through the pdf. I had a bit of a cry about it last night, compounded by my head symptoms being pretty bad. But getting my frustration out seems to have helped, as today I've written up my appeal! I gathered up everyone's advice here and all the links, tried to put something together as concise as possible, trying not to sound too know-it-all while also trying to explain that there is evidence to show that CBT and GET are not helpful. I was wondering if someone might like to take a quick read and give thoughts on if it's ok? I feel it's perhaps a little long, unsure if I've gone into too much detail and stats or if I need those to prove my case.

    Here's my draft so far:

    I would like to appeal the decision that my condition has not been fully treated as I have not undergone CBT. I was also informed that, while not part of the decision, exercise therapy and seeing a rheumatologist were recommended. I have not seen a rheumatologist as no doctor has ever recommended this since I’m in the subset of CFS patients without pain symptoms. I would like to appeal the recommendation for CBT and exercise therapy since they don’t meet Centrelink’s definition for ‘reasonable treatment’.

    Centrelink describes reasonable treatment as treatment that is low risk, with a high success rate and where substantial improvement in functional capacity can be reliably expected. CBT and exercise therapy do not meet these requirements, as exercise therapy risks worsening of symptoms in CFS, and both CBT and exercise therapy have proven low success rates in patients with CFS. A substantial improvement in functional capacity cannot be reliably expected for either treatment.

    There is no evidence base to support the notion that CBT or exercise therapy could lead to substantial improvement in CFS. A large study called the PACE trial was used to justify recommending these treatments to CFS patients worldwide. The study showed just a 22% recovery rate for these treatments, which does not meet the reasonable treatment definition. However, in 2016 the data from this trial was released and re-analysed by numerous independent researchers. This proved the trial was highly flawed and among its many issues, it changed the definition of recovery part way through to inflate recovery rates and did not use CFS diagnostic criteria so many participants did not actually have CFS. When the original trial definition of recovery was used, only 4% improved with exercise therapy and 7% with CBT, which definitely doesn’t meet the reasonable treatment definition of high success rate and reliable substantial improvement. When you consider that many participants did not have a condition as serious as CFS and the recovery rates were still so low, the actual recovery rate for CFS patients is likely even lower.

    Additionally, an evidence review conducted by the US Agency for Healthcare Research and Quality has shown there is insufficient evidence that CBT improves function or employment rates in CFS and there is evidence that the treatment does not impact quality of life in CFS.

    In recent years, research worldwide has proven that CFS is a physical condition, not a psychological one. Patients with a proven physical condition should not be required to undergo a psychological treatment. This would provide no substantial improvement to functional capacity since psychological treatment cannot treat the actual physical dysfunction causing symptoms. Unless all physical conditions such as MS or paralysis require CBT to be classified as fully treated, then CFS should not require this psychological treatment either.
     
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  17. Alvin2

    Alvin2 If humans were rational...

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    You post reminds me of my reply to this thread
    http://forums.phoenixrising.me/inde...lity-hearing-tomorrow-any-pointers-usa.52510/

    I still think legal help is suitable in your case, they will know how to make the case for not using treatments that could make you worse while keeping the focus on your condition and not the state of research. In the end someone with say Parkinsons would be approved not because of the state of research (there is no cure) but because its well known to be debilitating. It seems your not interested but by not using resources that could help your case your reducing your chances of success.
     
    Izola likes this.
  18. purrsian

    purrsian Senior Member

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    Thanks Alvin, you make a good point. It's not that I'm not interested in pursuing legal help, I actually think I should do it, I think I've just been a little overwhelmed and afraid about it all. I've never required legal help before and anything unknown causes me anxiety (thanks in large part to CFS isolating me so much). So I just need to suck it up, face my anxiety and go get the help I need. Don't worry, I'll get there :) Just always takes me much longer than the average person to get through things (but don't worry, keeping an eye on my time limit for appeal!)
     
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  19. Snow Leopard

    Snow Leopard Hibernating

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    The key with the PACE trial is that the study showed that patients were less likely to be working and more likely to be on welfare after CBT than before (though there were no differences between any of the groups).

    Please appeal! I did and I was successful (this was years ago though). Try getting advice from your local ME & CFS group.
     
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  20. Alvin2

    Alvin2 If humans were rational...

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    Sorry for being pushy, i want to see you succeed but i don't want to make you feel bad. When i first applied i did it myself, i went through the appeal myself because i didn't have the experience i have now. Finally when i did look into legal assistance i had exhausted several options that may have worked out for me because you don't know the ins and outs until you've gone through the process but once you go you can't go back and redo them better, i had used up some of my chances.

    Around here lawyers are very friendly to clients because they have seen it all which is nice because when i needed reassuring the lawyer was patient and understanding and explained every question i had to the best of his ability. The reason i suggested you look into it soon is because they don't work well last minute since they are juggling clients and need time to build you the most winnable case, but i do believe with a not cut and dry ME/CFS type case they can work well on your behalf to put together a tight case. If you had a disease like Parkinson's or Alzheimers you would be approved much more easily because there is no arguing its not a real disease, they would be laughed out of any court well before they walked in the door. Since we have no disease mechanism plus the stigma they can argue "plausibly" with the goal of denying you what your entitled to which you have to overcome. I guess i am also talking to my past self when i suggest legal help and again i apologize for putting you on the spot.

    No matter what you decide to do i am happy to give you the best advice i can, and i hope you succeed :hug:
     
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