What to do when something is really wrong, and you cant get help

[Pipkin]

I find it hard to cope with all the slogans and advice about getting help, but even when I recognise something is majorly wrong and i am not coping, I seem to be the one that slips through all the gaps in the system and I dont know where to go and I seem to be getting ping ponged backward and forward and going around in circles.

I have been so ill from anorexia and really physically unwell and majorly depressed and unsafe, and everywhere i go I am told I am too ill from anorexia to get help and no one wants to take on the responsibility of anorexia.

Everyone says I need to be in hospital but the wait lists for private hospitals and the exclusion criterias means I cant access care when I need it, and the local public hospitals just say they dont treat eds and they wont/cant do any proper ax or referral process.

People talk about early intervention but what about when you cant get treatment and just get sicker and sicker, and are effectively left at home on your own getting sicker and left to self destruct.

If people are ready to access treatment it would be nice if there was actually treatment available. When health professionals and services refuse to offer treatment when it is needed people just get sicker and sicker with more and more complications.

Everyone knows the death rate with anorexia is the highest of all mental illness, yet it is impossible to people with a severe and enduring eating disorder to access treatment.

[Baboo]

Thank-you for your post Pipkin.

i can not imagine how frustrating this may be for you, with not having access to support from your local hospitals when your ready to be assisted with recovery.

May i ask; do you have any health services your linked in with that know of your situation that you trust?

You can always ask ( for example) a doctor or hospital staff member: " if you cant help me, can you link me in with some one who can?"

Im hoping you can find a service that will work with you and what your wanting for support.

A call service that may help is:

-The Butterfly Foundation: 1800 33 46 73

Can any one else relate or give any words of advice for Pipkin?

[Hobbit]

Hi Pipkin,

Than you for your post, and as Baboo has sowhn, people are there to listen to you. Perhaps you might consider a support group? Can often be great help to talk to people in similar situations as yours, sometimes knowledge via experience can be more beneficial than clinical knowledge.

I have attached a fact sheet on eating dosorder produced by SANE Australia:

http://www.sane.org/information/factsheets-podcasts/179-eating-disorder

You might alos be interested to look at this website - the Naitonal Eating Disorders ollaboration.

http://www.nedc.com.au/

I hope this information helps you, and I encourage you to keep posting on this forum.

Is there anyone else out there that can give Pipkin some kind words?

[Pipkin]

Thanks
Yep, I am aware of them, and I have said where can I go when I can't get treatment here etc.
There is nothing in my area, wait lists are closed because the practitioners are "drowning in referrals".
I have checked out everything, and there is a dire need for more services.
I am on wait list interstate. By the time I get seen I will have been 2.5 years on the wait list.
Butterfly run periodical online support groups which I do.

[Max]

Hi Pipkin

Can I ask you some questions ?  How old are you and which state are you from ? We have a daughter with Anorexia and have had to work very hard trying to get her help. We feel a bit the same as you - the systems in Australia are really not too good.  If you are a difficult case then the "'so called" experts often throw up the hands and say we cant perform miracles.

The good thing about you is that you recognise you have a problem.  Do you want to get better ?  Are you eating regularly ?  Lots of questions - sorry Final one - how long have you had the illness ? 

[Pipkin]

Hi. I am 41 years old and have had anorexia for 28 years. I missed out on all the early intention and had had anorexia for 10 years before it was formally diagnosed, although my mum would picked up on it about 16 years. I am in nsw and in my area no one knows anything about eds and only treats psychosis. I get ping ponged between the gp and the local hospital and get sent home from the hospital even when deathly ill, with no one able to find appropriate referrals in this area.When a person has had AN for too long the hospitals don't want to bother, and when there are so many co morbidities they don't want to deal with it, and just take on the easy patients with "better chance of recovery". I guess when I have been turned away so many times, and have tried so hard to access care but been told I am "too old, have had it too long and the bed should go to younger patients", I guess sometimes I feel like well I can't get help so I will just give in to it. Even when I have been desperately sucidaxl and turned up to emergency, saying I was scared I was going to be take my life, I got sent home without even seeing the psych team as they were "busy". In 2009 I decided I was ready to do what ever it took to get better, and thought that everyone would be so happy I was finally ready to get better. I didn't realise that every where I turned I was consider "too ill", "too old" for treatment. I have fought so hard for treatment, and have just about given up now, and don't want to waste any more money on people who don't specialise in eating disorders and don't know what they are doing. Losing the will to fight for recovery when there is no one prepared to support recovery, so I may as well turn back to my maladaptive coping strategies.

[CherryBomb]

Hi Pipkin,

It sounds like you are caught between a rock and a hard place at the moment. On one hand, you want treatment yet on the other hand it's tempting to turn to old behaviours because treatment seems impossible to access. It sounds like you've tried so many options.

I'm wondering if have tried finding a psychologist? You can find one on the APS by doing a search based on where they are located and their area of expertise. So you can search for psychologist that specialise in ED. Under the medicare rebate you are entilted to six sessions, and then you can get reassessed for additional sessions. To access a pyschologist under the medicare rebate, firstly check with the psychologist if they offer it. Then arrange an appointment with your GP to get a referral to the psychologist. 

When things get stressful, old maladaptive behaviours can seem tempting particularly when it seems like there is nothing else. When you feel this way, it can be helpful to search for altnernative ways to cope and delay urge by seeking support, talking it through, and or doing other activities. Reach out, though it's geared towards young people, has some great self-help information that could be useful. In the link, that I've added at the end of the page, there's a number for the National Support  LIne for ED. 

Take care,

CB

[Max]

Hi Pipkin - Your story is really heartbreaking. I cannot imagine how desparate you must feel at times. Do you have any family support ?  Would you think of moving somewhere if there was more support ?

What about writing to the Health Minister in both Federal and State Government. You could ask TheChief Psychiatrist of NSW.  There is CEED NSW TEL 8587 0200.  The hospital we have heard is good in NSW is Westmead Hospital.  I think it is always better to put your concerns in writing with copies to the Health Ministers. 

I understand that even when you do this you still may get no satisfaction and I understand how annoying it is when you say hey I have this problem, yes I need help and you receive excuses & no help.  All I can say is don't give up - keep trying and just realise you have been so strong & brave to even reach this point.

Good wishes

Max

[Pipkin]

Thanks. Yep I have used my better access for this year. Psychologists that specialise in ed are limited, with long wait lists of around 10 weeks, or wait lists closed. cbt doesn't work for me, and I have been told they can't help me. And at around $400 an appointment, I am over spending my weekly salary, for a 50 min appointment that doesn't help and causes more stress because of the drain on finances. Sitting in an office for 50 min does nothing to get food into me, change my life situation etc. have to toss up cost benefit. tried psychological services for years and didn't change anything. I would be better in a group situation/program with connections with others.

[Pipkin]

Thank you. Yes westmead is supposed to be good for kids. I am out of catchment for the adult program.
I wrote to jillian skinner in may but no response as yet, although my local MP also wrote to her. Will probably take a while.
Would be nice to access group programs in the community/local area without exclusion criterias.
At some point you just have to get to the point that services are limited for those with complex eating disorders, and I have investigated everything. I am not the only one in this situation, and all I can do is advocate for better support services. I am not sure about the chief psychiatrist of nsw. Will look into that. Do you know who it is? Thanks