"AN and ASD discrimination through the health care system"

I believe EDOS should provide care to someone with a formal diagnosis of Eating Disorder (ED), not be discriminated against for separate diagnoses of Autism Spectrum Disorder (ASD).

Fitting the ED requirements under the DSM5 for AN/ASD/ARFID is what NDIS is there for. I believe NDIS can manage the ASD, I feel they’re doing their job.

How Toukley ED clinic feels I have the right team around me when I was discharged with no community support, removed from their program after almost a 2-year wait, I believe knowing my diagnosis at the very beginning at my initial assessment at Toukley that I have ASD. They gave me information on Home Enteral Nutrition (HEN) treatment for false hope.

My previous 6-day admission, as for the team saying I was on solids when discharged is a lie in my belief. I was nil by mouth during my short stay, I believe they realised they screwed up, I wasn’t given enough hydration. I was without nutrition 5 hrs while I believe they lost my feed, I quote as I recalled, ‘’Go raid the fridge, we’ll deal with the consequences later, they've been 5hrs no nutrition’’. I believe I was given some 80-year-old sick person's nutrition. I feel the lack of staff and my 1:1 not being there most of the time, to even qualify the allegations written on my discharge summary.

A nurse broke my NG. After a team meeting, I recall they told me that discharge would be setting me up, due to failure in recovery and sending me home unable to maintain it. They gave me a sandwich, I became unwell, hot flushes, felt I was coming down with a virus, nurse said as I recalled, ‘’that’s your body metabolising’’. Feeds back on 8pm to 6am, I asked for a doctor and I believe was ignored, requested pain relief that I felt took hours. Feeds turned off again that next day, I had up&go and was discharged not long after.

It went from not sending me home due to, I believe, me not being able to maintain their goal as I hadn’t in hospital, to being discharged. They asked if I would like to go home, I was honest and said I was scared and didn’t think it was a good idea. The DR came to discharge me, they said the staff member from the psych team wasn’t there and asked if I was seeing anything/hearing voices, have thoughts of harming myself or others? which I responded, well I guess I wouldn’t know if I was having delusion as people tend to think they’re real? But no I think I am fine. Apparently, that was good enough for them.

The current state of my body/mind has relapsed since the end of 2019, my body/brain has been starving for 2yrs, what form of cognitive functioning in your opinion in the field you work in do they think I am at?

Just because I am no longer in denial, with nowhere to go, prime example I can’t turn to the one thing I should be able to, Toukley ED clinic.

It's appalling. We’re told to reach out and ask for help, to I feel, be dismissed and discriminated. I believe COVID has had a massive effect on an already corrupt and careless system. I feel if I could do more intake than I am it would not be called AN. I am doing my personal best and asking for additional help. Where does that leave those who have ED/ASD. 

I chose HEN because I have no other options. In my opinion, they can continue to pretend I am doing well while I manage HEN at home, risky it is, sitting here with nothing is worse to my health/mortality. I am happy to do HEN, continue my regular appointments, NDIS covers ASD, do HEN with OT on sensory issues and introduce solids. Another clinic thinks this will be beneficial towards regaining cognitive functioning to move forward with recovery. 

The reasons for HEN is to gain cognitive functioning to provide the nutrients to my 2yr starved brain, I believe you know being in the industry, it’s key to the road to recovery. I am able to cope and manage that, so surely you can see from a medical point why NG can be an essential part to kickstart recovery. They keep saying if I feel these symptoms to go to the hospital. I do go, I get sent home.

10wks constipation, blood filled the bowl and dripped onto the tiles, I was so scared. I had abnormal ECGs, low iron, very dehydrated, checked for ischemic heart attack, echos, I wore a Heartbug for 4wks 24/7 ECG recording at my parent's request, coming back with heart problems, surprise. Racing, palpitations, blacking out, dizziness walking around the house holding walls, do they have any idea how painful having your rectum tear repeatedly and a nurse roughly shove their finger with I feel, no dignity splitting it open again, laying weak already with a finger in your rectum bleeding in agony in their words as I recall, you’re not sick enough’. Dehydrated, no fluids, at home I crawled to my dog's bed as it was closest to collapse onto. Scared of not waking up feeling weak to feeling I am having a heart attack standing up to go to the bathroom. 

What part of that with a BMI 13-14 was stable to go home?

You don’t fit it if you end up in the morgue either, a little late I believe when you’re dead and end up with a lawsuit on the hospital's negligence from family. That’s the reality of a bad outcome. Your clinic knew all of the info prior to the initial assessment, hence the acceptance call I received.

If I didn’t ‘fit’ I feel you should have told me then with a BMI of 13.2, HR 42bpm. What they did was wrong, nothing but excuses given in my opinion, no humanity/care, no apology that would mean admitting they're in the wrong leaving them liable. I believe they’re still liable. They can’t cover this discrimination. 

AN according to the DSM5, fit requirements for support, admission, programmes, HEN and Medical and psychological care.