Twitter, I’m about to get VERY grumpy. I have some of the smartest, caring people trying to support me. But despite literal hundreds of pages of evidence, @NDIS have said “insufficient evidence submitted” I’ve been in hospital 16 nights. Second fall admission in as many 1/
Months, with all due respect @NDIS @billshortenmp @stevegeorganas @PWDAustralia @JFAPurpleOrange @PictonChris @NatCookMP what the heck more can I possibly do? Enough gatekeeping, evidence is supplied by multiple specialists and allied health. I already have multiple 2/
Documented avoidable adverse reactions, more frequent hospital admissions and longer admission. I really need out of inpatient services and back home, but without #NDIS supports that’s not going to happen. #AusPol it’s 2023, we’re meant to be a 1st world country that cares 3/
For those most vulnerable, I’m struggling in so many ways, this isn’t safe or sustainable. All I’m asking is for appropriate help. What is it going to take @AlboMP less talk, more action for #PWD needed, before I end up injuring myself worse than I have already HELP ME! ENOUGH!4/
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More from @iPilko

Jun 18
Someone again has made changes to my drug chart with out advising. I don’t know what the hell is going on. It’s written multiple places on “My health plan for today” board in my room. EVERY knows this is tricky, don’t fiddle if you don’t inform the patient. Changed at 14:00 1/
Today never advised, never handed over. Let’s see if I can get this fixed without calling a consumer MET. It SHOULD not be this hard. 2/
When I was seen by the junior doctor today, they were told I was having issues with pain and that it would have to be dealt h with tomorrow when everyone is back on grand rounds. But no, someone fiddled, ward TL confirmed chart change, I’ve asked for Dr on call, let’s see 3/
Read 6 tweets
Jun 8
It will come as no surprise, I’ve undergone a massive setback health/mobility wise in the last month. I’m not currently ambulant. I have been “compliant” with physio, but in the words of the consultant “we have quite a few things to work on” that friends is “my life” a team is 1/
Working on, I don’t want to alarm folks but the last 1/52 especially has been incredibly frightening. It appears I have had 2 falls in last 6/52, still can’t determine LOC or underlying cause. Make no mistake, absolutely hate being in hospital, especially and acute hospital. 2/
I was at octogenarians bedside daily post his fall and nursed him home through the active dying stages. That’s brutal beyond words itself. Since the most recent of falls, I’ve experienced some of the most challenging medical moment of my life. If you know even part of my story 3/
Read 5 tweets
Aug 19, 2022
Something I’ve not posted about is the financial pressure octogenarian and I are under. I’m still learning how to manage his financial affairs as both an unpaid family carer and power of attorney. Last year with two weeks notice, I secured residential aged care (respite) 1/
For my dad, I then had surgery, discharged home, bumped back into hospital and spent essentially 6 months in hospital. While an admitted king stay patient, in the country, up to 90 minutes, one way from home. Here’s some of the things I had to sort through. I’m going forget 2/
Stuff, because this is like when you start to list people in a thank you and you always forget some poor bastard! Anyhow, so after about 4 weeks in inpatient rehab they decide they can’t help me at metro facility. So the way they deal with this is the 3/
Read 23 tweets
Aug 18, 2022
I was going to try and detail just some of the hats I wear as a unpaid family carer (for my 83 yo octogenarian father) you know I got overwhelmed at the job list and just started sobbing. yeah, that happened. Probably explains why I can't sleep. I like to resolve things 1/
When you get to the deep level of "hard adulting" I've had to do over the past decade for my dads well being and safety, virtually everything is a mad challenge. How the hell you build skills and resilleance to deal with such, fork me, don't ask me. You've seen my tweets 2/
Over the past few days/weeks/months/years those twitter breaks, where I disappeared without warning, basically a breakdown, I had to withdraw for safety. I see twitter as privilege. It's a privilege to get an insight into other's journey and you share yours. 3/
Read 9 tweets
Aug 18, 2022
I'm in the process of applying for the Disability Support Pension. Wowers what a broken process. I've submitted a huge amount of information. Just had a 35 minute call. A report is then written. Then that report goes to the Disability Team @Centrelink for review. A letter 1/
Will then be generated. Either saying approved/denied/more info. A further review by a GAD Government Approved Doctor may need to take place before a decision is made. I'm living in financial poverty due to #Auspol social welfare policy. Just what am I meant to do in the 2/
Mean time? Reached out to local federal member @stevegeorganas a good local member. But seriously, My understanding is Centrelink is part of @ServicesGovAU formally "Human Services" there is no humanity left in this process. What's being done to me, to gate-keep. 3/
Read 4 tweets
Aug 17, 2022
CW: Mental Health/ Suicide/PTSD
I don’t want to jinks anything but I think I may finally be getting somewhere in sorting out the mess that is my life and insanely complex health issues. I won’t probably comment on how close I got to the advanced stages of planning I got to. 1/
In regards to doing everything possible to not see tomorrow. But let’s just say the past month has been scary. Those times I’ve just disappeared in here? That’s me going to “can’t see the edge cliff, because I’m right on it” because of systemic mismanaged at most levels 2/
Of various health services, It’s challenging to seek support. Because the last time I tried it was handed poorly and I’ve been literally trying to hold on. Ironically my physical disabilities probably saved my life multiple times. Cause fuck with octogenarian in care the 3/
Read 8 tweets

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