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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    Update

    To my surprise Ive got a letter from the HCSCC, the Complaint Commisser from my complaint about Disability services which was put in ages ago (umm was it mid last year I put in my complaint? and then was dealing with it from). Im surprised at this as obviouisly I'd gotten confused as I thought they'd dropped my case a while ago when I got told to contact the Disability Advocacy and Complaints Service. I thought when they had said that that they were ditching me. The person dealing with my case had also said my case didnt fit the things they deal with and told me to contact that other complaints place for an advocate (this happened after a previous phone call to me in which they said they were going to issue a section something or another (forget what) on DisabilitySA if they didnt sort things out.

    Unless they did ditch my case as it was "too hard" DisabilitySA was ignoring them, but then picked my case back up due to my online public protest?? (as HCSCC oversees all the other health services including DisabilitySA).. maybe the HCSCC has heard about or seen this or seen Im wanting to get hold of a lawyer so picked my case recently back up??

    I do know that DisabilitySA has seen stuff I have put online as recently their regional manager I think it wsa said to me she wants to talk to me about it (they told me I cant mention names etc.. but I'll do what I like, they cant do me for slander when everything Ive said is true!!!. Im wanting to take them to court for what they've done to me and would if I wasnt basically housebound and Im not about to shut up about what they are doing, how they are treating those who have ME/CFS, so Disability services can threaten me all they want. If one of their employees treats me badly, they can expect that I will be posting about it PUBLICALLY.

    So due to thinking that HCSCC were off the case, I havent been contacting them at all about anything as I didnt know to be still doing that. So I now got a letter from there in which I now need to respond to and update them on everything. Im feeling overwhelmed as I have to do that by 21st of March and it can take me weeks to do an offical letter like I now need to do. (Im still not going well right now as Im still sleeping 14-16hrs per day since I further declined).

    So not only do I now have the appointment with the Disability Advocate to deal with and then a follow up appointment on another day with DisabiltySA .. and also needing to get to urgently get to my allergist as I still dont know what I had the very bad allergic reaction too (I still have a couple of the apointments they granted me.. mind you for themselves to gain info on me rather then really doing it for me, nothing they have done have they actually done for me.. everything Ive got has been a real hard fight to get)..but now I also have to explain well a whole lot of things DisabilitySA has said to the HCSCC in writing.

    :( I dont know what to do right now.. Im worried I cant do all this.. attend the appointments and do this letter in time, responding to this letter is extremely important as they are the ones who can force DisabilitySA to start treating me right. So Im now wondering if I should cancel the other two appointments so I can focus on this letter to make sure it gets down by the date they've specified I need to respond to it by. Its all too much (Ive hardly been at PR much of late .. not like I usually would of done...as Ive needed to be in bed sleeping so much).
    Last edited: Mar 7, 2014
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  2. AndyPandy

    AndyPandy Making the most of it

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    I'm wondering if asking HCSCC for an extension of time in which to respond might help you. You could nominate a realistic timeframe yourself, or say that you will respond when you are able. Perhaps explain that you are currently very unwell and simply not in a position to respond at present.

    Best wishes.
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  3. taniaaust1

    taniaaust1 Senior Member

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    anyway.. here's the letters I just got which I need to properly explain and offically respond back to... so completely overwhelmed wondering how the heck can I do everything I need to do (I really doubt Im going to be able to when others what things done... Im either going to be just not doing things properly or I need to start cancelling stuff).
  4. taniaaust1

    taniaaust1 Senior Member

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    6th March 2014 HCSCC letter.jpg anyway.. here's the letters I just got which I need to properly explain and offically respond back to... so completely overwhelmed wondering how the heck can I do everything I need to do (I really doubt Im going to be able to when others what things done... Im either going to be just not doing things properly or I need to start cancelling stuff).

    oh. Ive just noticed on rereading this.. that it says I can contact them if I need more time to respond..thank God for that, I'll be doing that. (I read this letter twice before but my brain didnt absorb that line at all.. too much with all the letters to take in).
    MeSci likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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  6. taniaaust1

    taniaaust1 Senior Member

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  7. taniaaust1

    taniaaust1 Senior Member

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  8. taniaaust1

    taniaaust1 Senior Member

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    Anyway, I do have a heck of a lot to say to the HCSCC over the things DisabilitySA has said in their letter to them eg. of cause they didnt say that when those people spoke to me re transport.. that I was told they couldnt transport me due to my needs (it wasnt me refusing transport .. The St John Service people were left completely confused why even DisabiliitySA refered me to them as they sai not only they arent care workers so cant transport me..but also told me that their organsiation isnt for taking people to medical apointments and things like that!!... DisabilitySA has gone and made it sound like Ive refused help which is there for me. I think Im going to have to do a letter to those services and get it put in writing that they actually cant help me and send their letters to the HCSCC too (or otherwise it cames down to my word against what DisabilitySA are saying about me).

    The redcross transport isnt suitable for me either..once again my MCS but also cause they pick up more then one person, I sometimes have to actually lay down in cars and need my legs up and I cant be away from home too long (Im too sick for a day out with a car full of others)... and the wheelchair and collapse issue too.. I can collapse going to the car.. and in that case they'd be stuck for maybe up to half an hour waitin for me to recover on the ground with others they may of picked up to be taken home from appointments too.

    My health is so poor I need a support worker with me the whole time Im out. I often cant even wait in waiting rooms of doctors (they dont always have a spare room to offer me if needed, thou some of my doctors do) . So this causes me at times to have to wait in a car (and have the receptionist come out and get me when Im called)... so I cant be just dropped off at an appointment either and picked up after (like the redcross service do). I cant be left waiting around at all. (Its basically needs to be get me out to my appointment, give me any help Im needing and get me straight back home.. anything not like that isnt suitable. I crash far too bad ME wise).

    The transport subcity scheme.. allows half price taxi vouchers.. they wanted me to go to a doctors appointment (I would of had to use one of my appointments to do that or take it out of my 5hrs per week which no where already dont cover my care needs) and get a form for that filled in. Thing is Im too unwell to be able to catch a taxi myself!! I cant push myself in my wheelchair and collapse a lot so can not leave my house alone!! and taxis (and there is the MCS issue on top with taxi drivers deorderants).

    DisabilitySA hasnt considered my ME/CFS and all the disability it causes me at all!!! It bugs me that they've tried to make it sound like it is all my fault and like Im just being difficult or something rather then listen to me or go and do some reseach for themselves about severe ME. But then they arent listening to my doctors either or other wise, they would be allowing me to have my medical appointments when needed etc etc . Instead of it taking them a whole year to allow me to have support to get to just A FEW of my specialists as a "once of" thing. (for themselves).
    Last edited: Mar 8, 2014
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  9. taniaaust1

    taniaaust1 Senior Member

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    I got a phone call from the Equal Opportunity Commissioner place today (a guy called "Ian Law" .. umm would that be his real name or a made up one for that place?). They are now starting to investigate my case (told me that my story is a common one they are hearing, others like myself) and he said he'd phone the HCSCC and get a copy of the letter they sent me which includes the Disability services letter too.

    Much of my complaint thou to them about the discrimination done to me over ME/CFS throughout various gov depts has been done too late (he said things need to be reported to them within 12 months and I think its been several years now). That sucks seeing Ive been doing all I have been capable of doing and are like having to almost fight to survive day by day otherwise I would of put in complaints to Equal Opportunity Commissioner earlier.

    Hard when one is too sick to be doing complaints everywhere.. so now Ive been let down as time has expired for Equal Opportunity to investigate that, so Centrelink now gets away with the abuse they've done to me including the 2 smashed cars due to their threats when they forced me to drive while I was too sick). I was in such fear too at the time after Centrelink did with forcing me to appeal 3 times when very sick, just to get the pension they should of given me straight away, that I was terrified in rocking the boat after that hard battle and fight which made me sicker at the time to continue on fighting for justice.. due to my health I was forced to let it go at the time, no other choice and accept that I FINALLY got the pension .

    Scared also as ME/CFS is hard to "prove" if they expected one to prove it). I had less medical evidence back then if forced to "prove it". It emotionally hurts knowing they got away with doing what they did cause I was too sick to fight for further justice without further damaging my health.

    Now that Im in the situation in which my health has been completely destroyed by various gov services doing the wrong thing.. Im prepared to keep fighting... Im not going to let go this time even if the fight is going to kill me!!

    Turns out much of my complaint about the state Disability Services they can probably get away with as it would be hard or near impossible to prove.. eg the discrimination they've done towards me re not giving me enough support hours as they can quote "funding issues" as being a valid reason I dont get the support Im needing (kind of sucks as I know some disabled people get "funded" to get taken to the beach and outtings etc with their carers while I got left missing my meals with not enough hours to help me cook when Im on a special diet..umm maybe if I could prove some are being funded for "outtings" maybe I would still have a case there. I guess I could try to get evidence of that).

    They have thou done things that does PROVE they discriminated against me to which they wont be able to find a excuse for eg not refering me to their physio place where their referals go to, to get a wheelchair much sooner.. taking YEARS to do that... leaving me humilated time and time again due to ending up collapsed on supermarket floors, in carparks and everywhere else. When there was a whole warehouse full of spare wheelchairs sitting there unused. So equal opportunity commission thinks there is case.

    I forgot to ask the equal opportunity commissioner about the rejection I got over getting the heating and cooling rebate (yet another dept who discriminates against ME/CFS) if they can cover that case as I still come under the rules that they wont give it to a person who has ME/CFS in this state! this rebate... even if my rejection letter was maybe a year back? (or maybe I wasnt.. I cant remember if I mentioned that to them in my complaint or forgot to do so).

    I think I need to follow that up.. if they say its too late there, all I need to do is apply again and get rejected again and hence then it will become a current discrimination on the bases of ME/CFS when I have severe issues with heat. These gov depts illegally discriminating against us all need to be fined by the equal opportunity board. They all need to be forced to stop their neglect and abuse of ME/CFS.

    I think I need to put my important medical appointments on hold and even thou its very bad on my health, fight these things as these people/departments keep getting away with it as we are usually too sick to fight things and we are denied the benefits we should be getting, we are denied the support we should have and do need. (the fact that time limits have expired with some things so some have got away with the terrible abuse due to me..emotionally hurts. I dont want that to keep happening. I now want to stand up for myself even if it KILLS ME, I know Im already doing too much and shouldnt be putting my sick body under my stress and strain). The system is really working against us with the time limits when one has been terribly ill the whole time and not being able to keep up with basic life stuff.
    Last edited: Mar 11, 2014
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  10. Indigophoton

    Indigophoton

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    I haven't been reading your thread for long, Tania, but, for what it's worth, I think you're doing incredibly well dealing with these issues despite your health. It sounds as if the tide might be turning in your favour, and that you've found some people who are really listening and can help.

    All my fingers are crossed for you that you succeed, and that all this labour and struggle doesn't have a long term impact on your condition; it sounds like a wise idea, as you say, to limit or reduce everything non-critical for a little while, to ease the strain. Hopefully, in the not-too-distant future you will have all the support you need, and things will get much better.

    Plus, then you can be really proud of yourself for having achieved it! :thumbsup:
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  11. taniaaust1

    taniaaust1 Senior Member

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    Thank you indigo. (unfortunately Im having to limit what may be critial things too to focus on thiis fight.. getting back to my allergiest may be essential as I had what could of been easily a life threatening allergic reaction and still dont know what that reaction was too (my lip and mouth swelled to something I'd ate. my tongue got affected too) but instead now that weather has got cool enough for me to be able to make that appointment and go and I now have approval for suitable transport to get to that one appointment with him.... instead Im having to deal with doing letters and trying still to get this other stuff sorted out.

    By the way things are I think there will end up being a long drawn out court case (if I can work out how to engage lawyer when Im basically housebound) as no matter what the outcome with equal opportunity commission and even if they fine the state services for discrimination in my case. Im still going to be left without the support I need as Disability services can still discriminate against me and get away with it by using the excuse "lack of funding" and they are responsible for my downturn into worst health.

    But yes..what has happened is certainly heading in the right direction to start to get things sorted out.
    .......................

    This stuff wakes me up in the middle of the night. I must think about it and stress about it even in my sleep hence Im up now (been up before 6am cause its stopping me from being able to sleep). I woke up remembering something which was said during the that phone call from Equal Opportunity place but hadnt absorbed the info and what the words meant till just now. Equal Opportunity Commission told me they dont have the judistriction (or a word like that), to deal with Commonwealth departments. Apparently they can only deal with state level things. Hence my complaint re my past Centrelink treatment and discrimination, action wouldnt have been able to be taken on that anyway even if I had put in the complaint at time. (the ME/CFS discrimination over the electrical rebate thou.. would come under state level as other states have different rule and give it to ME/CFS people).

    Its interesting how the ME brain allows me to slowly understand phone calls sometimes over days sometimes longer.. as bits of info from them come back and slowly makes sense of things the brain couldnt absorb at the time due to the fast pace of a phone call. Makes me wonder what else from that phone call I havent "got" understoood yet.
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  12. AndyPandy

    AndyPandy Making the most of it

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    Hi Tania

    I posted the above for you in this thread back in December 2013.

    You may want to pursue your complaints about Centrelink with the Australian Human Rights Commission (see link above). They deal with Commonwealth discrimination matters and Centrelink is a Commonwealth department.

    Best wishes.
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  13. Indigophoton

    Indigophoton

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    Yes I find this too. Anything the least bit complicated I have to deal with in writing, so that I can give my brain the few days it needs for proper comprehension. I can't process phone calls in real time! :)
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  14. taniaaust1

    taniaaust1 Senior Member

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    Ah thanks andy. That was something I cant remember ever reading... obviously didnt absorb your other post. That info is good to know if I can maintain it in my head and not forgot about that option.

    There is no way I could currently add yet another gov dept into the mix of the 3 Im already trying to deal with so I have no other choice but to leave that the time being.

    I also as yet havent had a change to do letter and a complaint over the bad treatment I got at the repat hospital with the head nurse (the one who made fun of me over my MCS) late last year/this year?. I really need to do that complaint soon too esp since I also do have a witness to support that she did this. I really need to put in the complaint there as otherwise, Im likely to run into her at some point and her mocking me again. (When that complaint goes in I hope they can work out who the head nurse the day of my appointment was.. as they actually refused to give me her name when I rang up and asked for it so I could put it into my complaint).

    That is a vet hospital so I wonder if the veterans who have GWS get made of fun by her too for their MCS.
    Last edited: Mar 12, 2014
  15. taniaaust1

    taniaaust1 Senior Member

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    Here's some more advocacy Ive tried to do for myself which I will be giving the Advocacy and Complaints person today to help her to understand that just how badly my ME is deteriorating due to the not getting enough support.
    "
    ME is a post exertional illness which can be made far worst when a person with this is over doing things!
    Time flow of how much my ME has degressed due to lack of enough support and hence over doing things too much just to live



    (others can back this up... I have a couple of past carers support phone number etc who can share how I used to be (before I moved, then after the move etc). Also one of my current ones who has been with me for several months, has also noticed Im sicker and having more trouble then I was)

    The year before early Jan 2013
    . 5 hrs was covering my care needs all except I needed only about one more hour per week or fortnight to help me do some cooking and freezing. I was doing my own floors, own washing etc ok without it causing my health to decline. (I was okay with doing things except standing things!! which are bad for POTS and dysautonomia, standing is worst then walking for many POTS people... so standing at sink doing dishes was far harder for me to do without a collapse then doing my own vaccumming). That 5hrs per week covered my support worker taking me shopping, post office, chemist etc and doing the dishes. I also was needing help to get to appointments. My level of ability was I was feeling okay except if I was just standing or when I did too much and then ME crashed.

    I did have trouble with my POTS back then as in I was collapsing once in about every 12 times I went shopping. (so was really needing a wheelchair at this point but most shopping trips werent ending in disaster.. but the collapsing forced me to restrict leaving my house and stopped me from leaving my house alone (as I collapsed and got stranded on a few occassions.. left crying in a gutter one time in the cold as I couldnt get myself home). I was trying to get a wheelchair as I needed one as my condition was so unpredictable while out.

    - summary.. could do my own floors, could do my own washing without issues but was needing some more support for those other things

    Moved early Jan 2013
    Horrifically was left without home support for many weeks (cant remember how long it was now. I remember I ended up dishes sitting on my sink for 3 weeks unwashed (one minute of standing can be causing me bad dysautonomia and my legs.. maybe due to having low blood volume which is often part of POTS, very quickly go to sleep if Im kneeling on a chair at the sink). I was left without milk/food for over a week before my elderly friend could come and visit and help me by taking me shopping (if it wasnt for him I would of been weeks without food!!).. fridge had been cleaned out when I moved.. All this caused me severe stress and with it me attempting to do too much due to everything being in boxes).

    After the move during support agency change over (they screwed things around doing that time.. put me with one agency who was about to give me support but then I found out that they hadnt done a contract for me with that agency after all as they'd decided it was too expensive..then the other agency took quite a while to sort its stuff out. They'd been given lots of warning by me before I moved to have had things ready for my move but they left it all till after I moved). I then didnt get any support with any packing after I moved (didnt get any help till over 6 mths later with that). I was left without even my bed set up for 6mths so was sleeping on mattress on floor where I was getting bitten and woken up all the time by ants. This increase in activity for me after the move (trying to look for essentials in boxes, trying to unpack some stuff here and there on top of already struggling) caused the ME/CFS to get worst.

    I went from previously collapsing once in every 12 shopping trips with support worker to collapsing once in every 3 (so it made that symptom 4 times worst!!). My brain also got worst too.. more often memory issues, more trouble with my concentration... worsening of my ME/CFS complex (so other symptoms worsened too). Now I was getting ME viral symptoms back in which I hadnt had in a very very long time.. eg regular night fevers, viral symptoms and needing even more help then before!!!

    Before I could go shopping with one support worker but now my collapses were so bad, I now needed TWO workers whenever I went shopping (so now needed an extra hour of support time there). Not only that, now I was stuggling more with things at home.
    I developed new health issues too during this time, started to get chest issues etc eg asthma and got diagnosed with it by a dr so now have a puffer. (I think the worsening of my condition along with the dust from a shockenly dirty house due to sometimes my floors dont get any support time to be done for months.. caused me to develop this to the point I need the puffer). I also developed a fungus issue on my foot bottom (from dirty floors I think) which I then had for many months. With mattress on floor and ant issue, I got ants in my ear and had to ring for medical advice etc (Ive had ants in my ear 3 times in the past year).
    End of 2013

    Further deteriorated as still overdoing things without enough support for my ME. Now I need wheelchair for every single shopping trip cause I'll collapse. In the year without support I went from collaping once in every 3 shopping trips to I would every decent shopping trip. So three times worst.
    March 2014

    Now Im struggling with things I was okay with before... eg now Im having trouble doing my clothes washing. Areas of my memory more affected. ME/CFS in general worst still. Before I only needing 9hrs sleep per night and 11 hrs when I was crashing.. now Im regularly needing to sleep 14-16 hrs per day as a baseline of my condition (and needing to sleep 18-19hrs after Ive exerted myself too much). Im getting so exhausted often that Im falling asleep while trying to do things at times. Im now often/usually needing to go to bed and sleep after my support visits and some times then sleep right throu to the next day!!! (new reason why Im now missing meals.. Im often now missing dinner as Ive slept throu it).

    My cooking before.. I struggled with it due to the dysautonomia issue and often burnt it due to forgetting it was cooking.. but now, Im often burning it due to falling asleep and not waking up while its cooking. This is happening to me up to 2-3 times per week (so causing me even more work as now as I hate the smell of burnt food.. Im having to attempt to scrub burnt pots so all this is probably just going to lead to further declining).

    I now can hardly go a day without having to have a sleep during it!!! Im now longer just housebound but now partly bedbound too!! It wont take very much at all for my condition to go to basically fully bedbound from here and DisabilitySA will be entirely responsible for this as it would of been directly caused by them not giving me the support I was needing for the severity of my condition (for ignoring the fact I have ME or ME/CFS if people want to call it that)

    At this rate if something isnt done to sort things out so I arent over excerting with the severity of ME I have, it is extremely likely (based on my past history I'd say 95% likely.. there is no reason to think that the slow and steady decline in the ME/CFS will stop when Im still being forced to do the things which is causing it).. that I will be fully bedbound in the near future as I have been in the past. This will end up causing me to have to be put into a home to be cared for (which will cost the government a lot more money) or for the Disability SA to have to use even more funding for my case when that happens (very bad management on their part that they arent considering I have a condition which worsens and can worsen rather badly when I do too much!!.. I loose the baseline of it I currently have and it can take years of doing the right thing for my baseline to improve).

    The fact Im needing far more care now then I was.. would of been entirely preventable if I was able to manage my condition and pacing like I know it needs to be managed (Im good at managing it and know how to avoid crashes if I can limit my activity) instead of being forced into trying to do to much just to live which has happened entirely due to lack of the support I was needing.
     
    Yours Sincerely
    Tanya Selth"
    ...............

    I hope todays appointment (first meeting with the advocacy and complaints person) goes well. Im very nervous about having to try to advocate to her well enough so she can understand this illness enough to be able to properly advocate for me. (I didnt sleep well last night and was up very early due to Im stressing over this). Its hard to get people to understand our issues and ME and even harder to get someone to properly understand in one meeting. Im tired and not at my best today (Id still be in bed asleep if it wasnt for this meeting coming up this morning). I best go and rest up for this appointment.
    Last edited: Mar 12, 2014
  16. taniaaust1

    taniaaust1 Senior Member

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    Quite tired after today.. have just woken up.... its like adrenaline still hasnt settled from todays meeting.

    The meeting went very well. The Disability and Complaints Advoacacy person Leatha, didnt want to have the meeting in my backyard when she say its state (she was probably fearing snakes!!! due to knee high grass) so the disability taxi guy and my elderly friend who managed to come today, had to spend a bit of time and effort trying to get her in her electric wheelchair inside my house when I have no ramp! (so that part was the drama of our meeting).

    I cant post the latest letters I have here on my case as I could get into legal trouble otherwise cause of who it was addressed to it being stamped onto it only they can legally share it and seeing that person wasnt me.. looks like possibly trouble if I did even thou its about me? (not sure where I'd legally stand if I shared it seeing its been stamped in that manner). Anyway.. its a copy of the DisabilitySAs "Need Assessment and Profile Plan" for me.

    To come to me.. this was sent to the HCSCC re the complaint I put throu there, and then from the HCSCC onto the Equal Opportunity commission due to my complaint I put throu there and then onto to my Disability and Complaints Advocate.. and from there I FINALLY got to see what DisabilitySA had written about me. (thank God she was willing to show this to me and open up the disability services need assessment info for me to discuss (before I had no idea where the issues were stemming from). So now I know what Im trying to fight against re state Disability service and what they've done and got there.

    If Disability Services was willing to share with me from the start.. there would of never been issues as I would of known what areas of my case where hitching things up.

    Anyway.. from seeing "their" need assessment of my case.. several things come to light
    1/ They've never changed the mistake they had in their file saying that I regularly see my daughter (so I suppose they were expecting her to help)

    2/ Says I self reported a heap of my medical conditions (to which I actually have medical documentation of and which I do think I have provided them in the past). So its reported in ways I said this or that without saying I actually do have them. (and obviously they didnt bother to ask either of my specialists on what symptoms ME/CFS causes). If they werent sure about anything they should of asked me for a medical report or test to show it. (if they, their case worker, ever bothered to properly work with me and home visit to sort this out.. it would of been sorted out ages ago)

    3/ They go on a lot about the issues I had back when they were refusing to give me any home support at all so I was then falling completely apart in all ways due to not being able to cope eg I was suicidal (at the time I was suicidal due to lack of care needs met and issues I ended up with around that).. then they go on about how I went to court over arson (that was over me nearly burning MYSELF up so I had a jerry can of petrol somewhere.. thou I NEVER lit anything..just thought about burning myself...something which ended up being thrown out of court..but yeah they dont mention what its over.. so yeah.. I have the nice word "Arson" written on my rdated Oct 2013). They are just soo determined to try to throw mental health stuf into things and try to make me look like a criminal while they are at it!!

    So anyway they brought into my report for end of last year.. my mental health freak out/breakdown which happened when I was getting no support from them back in 2010. They did that thou Ive had no mental health issues for ages (thank God Im currently mentally holding strong trying to fight the bastards!!). I'll probably mentally break down again thou if I ever get back to bedridden all the time stage due to lack of getting the services I need!! I truely do not think I could cope going back to that again.. I'd rather dead then like I was in the past.

    4/ It states that my nutritionist said Im well enough to cook!! sighs.. Ive had two nutritionists, one of them terrible so I bet this comment come from her. This nutritionist didnt listen to anything I said.. after asking me my likes/dislikes, what I cant eat etc.. she emailed me out a diet plan and in it she had ignored EVERYTHING I said .. even put the things in it I cant eat or wont eat due to religious reasons. Not only that, she had a section in her report saying that CFS was caused by watching too much TV (and I didnt even have a TV for years).

    So I dare say thou the nutritionists name isnt mentioned.. no doubt it was this one who has told DisabilitySA I can cook all my meals (I'd also told this nutiritionist that I did have a lot of trouble cooking and that I was struggling with the previous nutritionists advice as I was having trouble cooking).

    I was going to put in a complaint over her comment on CFS is caused by watching TV in her report to me in the past but I misplaced the report. (that was certainly overstepping her place to say that when she knows not a thing about ME/CFS)

    5/ DisabilitySA for some reason, this to me seems purposely done!!.. as I KNOW Ive told them who my GP is, Ive had to put it on forms to them. (Ive had 2 good ones since then who believe in ME/CFS).. they've thou ignored me and put my old one from 2-3 years ago down, this old one wasnt a believer in that ME/CFS exists, he ignored my specialists etc, he ignored the fact I was having collapses even when I was in his office crying cause I'd had a bad one and hence been stranded somewhere in the cold unable to get home. Not only did they put his name down as being my GP currently they also quite conviently didnt note down my last two GPs Ive had for during the last 2-3 years.. who were fully supportive and even have sent them letters and called them!! Letters and phone calls they ignored.. they left out their names on the document!!

    Anyway.. from the looks of this recent assessment, The Disability service is trying to make me look like Ive got mental health issues!! by using stuff from years ago (2010 when I had a mental health breakdown as I was so distressed and struggling) and putting it in ways in which makes me look the worst possible and ignoring mentioning my GPs and what they've said for past few years re me needing support as I have ME/CFS.

    Quite conviently even they dont even mention ME/CFS in my history till years into their report thou they mentioned I had Staphylococci in 2006. I think the first time they mention ME/CFS into their report is 2012. (They'd given me two rejections of getting any home support or services from them over the preceding years and it was being requested for ME/CFS.. but yeah.. they fail to mention any of this.. and just focus on mental health stuff.. completely ignored even reporting I had ME/CFS thou that was what I was having all the issues over. till I broke down when they kept refusing to give me any support at all).

    Im even more angry when I read this.. it shows in writing what I knew all along... they choose to completely ignore my ME/CFS throu those couple of years before after a third rejection they FINALLY decided to take me on as a client and give me some support

    I guess it would be okay for me to copy this part out of the confidential letter..this is the grounds in which they breached the disability discrimination laws

    "Tanya's complaint of disability discrimination seems likely to be linked to a claim via the Act that Disability SA has failed to provide specialist assistance or equipment required by her as a consequence of a disability or disabilities -s.66(d). With this definition, there is a reasonableness test, one where it would seem that she would have to show how any alleged failure was unreasonable in all of the circumstances."

    Anyway.. this is what I now will need to prove for this to become a law case. Now it will come down to .. should they have expected to have realised I was truely disabled? or have they got reasonable cause to fail to provide me the services I was needing?.. can I prove that they should of known...or not. (they could use things like the nutritionist's comment that I can cook against my case and use that to help back that it is reasonable that they were confused).

    I have till the 28th March to let them know if I wish to procede with a legal case throu the Equal Opportunity Commission.
    .........

    So what is peoples views? is it reasonable that they screwed up so terribly badly? ignored my need for a wheelchair for 3 years? have ignored my need for services including getting suitable support to get me to medical appointments etc etc? Should they have been expected to sort it out being a state disability service? I hope I can prove it by them doing things like ignoring my doctors letters (and even ignoring to even recognise who my GP is after letters and phone calls from her).

    I think I can prove they didnt provide me was a good standard of service (but will it be enough to prove they discriminated against ME/CFS?). One of my old CFS specialists once told me that none of his patients who have needed support services from DisabilitySA managed to get them to take them as a client. umm If I can chase him up and get a letter from him saying what he's told me in the past about this.. this would completely back up they are discriminating against ME/CFS.
    Last edited: Mar 13, 2014
  17. Indigophoton

    Indigophoton

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    UK
    That's commendably understated. I think I'd be calling it unbelievably ignorant.

    It's good that you know what's going on now, and can set about refuting it/straightening it out. It sounds like you have got a good advocate too.

    Hope you are able to get some well-deserved rest tonight!
  18. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Yes.. she was good, she didnt want any small details and is trying to keep things simple (I only had just over 1hr appointment with her). She had a calming effort on me which was good. She didnt read any of the ME/CFS info I typed or copied as she doesnt think she will need it.. she thinks my latest doctors letter will be enough as it shows Im severely disabled and for that level.. Im not getting much support at all. So she's going to precede on that ground (without having to get bogged down by stuff).

    I dont think DisabilitySA is going to admit they were wrong that easily thou... so do expect things may turn out harder then she is currently expecting (and I may have to drag out the things then I need to back my statements). They ignored all my doctors letters before so Im thinking they probably wont change their views just cause she's there.. but I think she can be tough!! I got that impression from her.

    She was completely appalled I dont even have a ramp for my wheelchair yet!!

    I just got out of bed to update and going back to bed now. Thanks.
    Valentijn and Indigophoton like this.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    You might approach the letter you have to write like it was a school paper. First make an outline of the points you want to make. Them work on writing up the points one at a time. When you are done read and edit the whole thing to make sure you don't say the same thing in more than one place.
  20. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    :cry: I cant sleep as Im actually having nightmares triggered by the coming Disability services visit... every time I get to sleep, Im quickly having another nightmare over my issues not being believed by them.

    Im dreaming that Im living home with my mother (I actually dont live home.. maybe shes in my dream as mothers are supposed to be comfort figures????) but my dream goes someone sent out by disability services turns up at my house, a man.. and he precedes to try to convince my mother that Im severely mentally ill instead of recognising my illness. In my dream my mother and the guy they sent out then starts fighting and Im terrified by what is occurring, terrified as Im not being believed and terrified due to they not believing ME/CFS exists of being locked away for being mentally ill.. at this point the fear in my dream keeps waking me up.

    Im so very exhausted (hence why I havent even been here today, I had my home support visit yesterday, they always leave me drained)..I so need to sleep (its midnight) but keep having this dream about DisabilitySA people not believing me. I dont know what to do.. I very much need my sleep. I do have a few benzo sleeping pills here but if Im currently hoarding my drugs as I dont know when I'll be managing to get to the doctors to be able to get more. (I need to arrange another visit but have everything medically on hold so I can focus on the meetings Im having to have to try to sort out Disability services as I cant focus and pace well enough on everything).

    If this keeps up looks like I will be taking some of these before next Mondays appointment. I can deal with a couple of nights of constant nightmares but I wont be able to deal with more then that without emotionally having a meltdown (which could be a big one, in which I go irrational) due to no sleep.

    It just makes me feel all the more angerier..what Im going throu due to them. I have not one ounce of trust left for my states disability service due to YEARS of basically fighting to be listened too and instead being ignored. I do fear they will keep ignoring me and then just get me locked up to get me off their back!!

    I know I should trust that Monday will be fine... I have a nice advocate who seemed appalled by my situation and how Ive been neglected...but even with that.. Im still fearful due to all my past experience with this disability service due to being treated like I lie (my black and white Aspergers thinking think they must think I lie or are mentally ill seeing they havent listened.. nothing else makes sense to me. And seeing their bullshit letter the other day which focused on a mental breakdown I had years ago due to no support.. .. just confirmed to me they think that Im just mentally ill instead of having a serious illness ME.
    Last edited: Mar 15, 2014

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