Friends, Family & Carers Forum

[MissContent]

Hi Brodie, I am in Brisbane and did my DBT course through the RWBH, there is also a programme that runs from Prince Charles hospital - both are excellent and are highly recommended. I also attend a support group that is exclusively for BPD sufferers, including those that suspect they are suffering from the disorder, family members/partners are welcome to attend as well. I am also aware of a couple of psychologists that specialise in BPD and DBT therapy. If anyone needs this info please do not hesitate to ask.

[Brodie]

Hey MissContent, I'm glad there are infact some good programs in Brisbane! My psychiatrist on the Gold Coast is also really great with BPD.

[chemonro]

Maybe get into contact with the BPD foundation?  

http://bpdfoundation.org.au

To deny someone treatment when they're in crisis borders on criminal negligence imo, but it's distressingly common with BPD which is woefully under funded and has huge stigma in the medical community. 

Do you have a mental health complaints commissioner in your state? Call them. Ask for a second opinion / diagnosis.  Remember it's the squeaky wheel that gets the oil. 

I think this guy Fred Ford talked about caring for people with BPD at the recent conference: 

http://www.snswlhd.health.nsw.gov.au/newsroom/GSAHS-Archive/caring-for-young-carers.asp

Also about the extreme amounts of travel and commitment needed to get treatment at the moment. It might be worthwhile trying to contact him? 

Good luck! 

[joeflood]

Thanks Brodie but It's Melbourne.

Unfortunately the rest of the family have private cover but my stepdaughter does not as she is over 18; and she would be in trouble anyway with a "pre-existing condition". My experience of using private facilities is that even with cover you end up with huge bills one way or another, which we are very poorly equipped to weather with no family income and other children.

We already have a major protest in with the Commissioner, which is the proper vehicle here in Vic, but after a month, apart from clucking sympathy they have done nothing - afraid to take on a whole establishment of doctors and the latest BPD fad we suppose. 

The irony is that my own son, who usually has nowhere near as severe symptoms, gets a bed whenever he needs one and has generally had a Rolls-Royce treatment from the same hospital for nearly twenty years - because he is diagnosed as schizophrenic, and knows very well how to play the game.

If the new Mental Health Act in Victoria had declared it an offence (as in Britain and WA) to "ill-treat or wilfully neglect a person" we would have a firm ground for complaint. The reason for this omission in Victoria is not clear. 

[joeflood]

Yep I agree there are plenty of resources for what might be regarded as "moderate BPD" - in fact it is such a hot topic that these establishments are now all over the place. She has been to Headspace but she is way too severe for their terms of reference. 

The hospital itself has laid down a perfectly reasonable plan and support for a "normal" BPD sufferer - but the plan remains completely useless as long as the patient is in a crisis state, barely able to recognise anyone or respond to commands or questions, in the middle of deep delusions and hallucinations, biting, spitting, violently destroying any sort of constraint, and homeless because not even a crisis centre will take her. 

All we want is for the hospital to give her drugs to stabilise her, exactly as they have done in San Francisco, Oregon and even Tamworth, how can they refuse to do something that has worked? But because of the prevailing dogma, which I believe the current BPD conference is busily reinforcing, they won't do it. And because they wont put her in restraints or sedate her, they say she "disturbs the other patients", is "behavioural" and is "dangerous to staff" so they dump her into the street, not apparently caring at all that she is dangerous to herself, the police, the public and us.

And the funny thing is, we know from half a dozen past experiences that as soon as she is stabilised she will be a model of cooperation and compliance (at least until she gets bored with it.

Our grievance here is not about long term plans like Spectrum etc, which I'm sure are perfectly good, it's about the lack of any crisis intervention or stabilization plan for anyone diagnosed with BPD, whether they have BPD or not. Surely this has to be a prerequisite for any long term treatment.

[Brodie]

I have BPD and have had private hospitalisation on many occasions, if your private hospital cover level is top level, there should not be an access. This should be shown in your insurance contract, or should be made clear by the admitting team at the private hospital before admission when they check your insurance plan.

As for "pre existing conditon" refusal, HCF covers children up over the age of 22 if the young person lives with family, and/or is a full time student. I was under my mothers cover until June this year when I turned 22. Because I live with my partner and not my mother, my coverage stopped. But prior to that, I had full hospital cover, never an excess from any private hospitalisation and I've had I think 4 private hospitalisations all exceeding 1 month which never had an excess.

I also have a friend who only got her private health insurance after her BPD diagnosis also from HCF...so hers would have been recorded as a pre-existing condition, too.

There may be an option for free public system treatment though through religiously affiliated psych hospitals...I don't know the Melbourne area so I can't name any, but I know in Brisbane an example would be Moonyah drug rehabilitation clinic...there might be mood wards in Melbourne similarly. It would be a good idea to contact The Salvation Army and ask if they have an inpatient ward which could treat a crisis patient, get her stabilised. 

Otherwise I know people who have used fundraising sites such as kickstarter and gofundme to pay for their private hospitalisations so that could be an option?

Just trying to think of ways you could get some more support, I know your situation must be very draining.

[joeflood]

Thanks Brodie this is helpful. I must have got my wires crossed when she first came to Australia when she was 19, as it seems I could have put her on the family membership at MBA which would have been a very good move. It seems I can put her on as a dependant even now, for an extra payment (though lord knows I am already paying too much). 

MBA are telling me she will have to wait 12 months before she is covered for an existing condition, which isnt much use at the moment.

I've never tried to use the hospital-only part of MBA, the few times I have been to hospital it has always been part of some whacking great procedure where I get nailed in all directions for specialist fees, theatre fees etc and end up forking over five grand. I thought It would be cheaper to send her back to the USA than try fooling around with private cover - if she was well enough to get on the plane - but there she would be on her own again. Even with the BPD diagnosis cursing her here, and the landlord ban on her being on our premises - I think she's probably better off in Australia with us advocating her case and supporting her. She was really getting pretty lost over there and her elder sister could no longer cope, hence the current collapse as soon as she arrived.

What I should have done is got her ambulance cover on arrival, given her history. Within the first month she ran up $3600 in ambulance fees before I woke up and got her the $40 insurance.

Pity, such a nice girl when she is well.

[Brodie]

12 months is an incredibly long time, NIB is who my partner is with and I was previously HCF...both is a 3 month waiting period for the high level hospital cover. You should also shop around with the private health insurance...Find out how much it would be with your current organisation to add her on for full hospital coverage, and then call others and compare. Tell them what the other organisations have offered and they might lower it for you for the purposes of competitive business.

She can get better, it's just a matter of finding the right channels. I'm not sure if you're aware, but therapy wise, DBT, Schema therapy and CBT are very good for borderline treatment. When I was still in treatment, the Australian government did have a plan thing where if you had to travel for treatment (I was travelling from Canberra to Sydney), they would help pay the travel expenses. I'm not sure if that still exists, but it was something available in 2011.

I hope you can get help for your daughter and I hope you have support yourself. If you need support, remember there is Carers Australia, The Salvation Army, eheadspace, and more who can be there for you, too.

[joeflood]

Hi Brodie

 Your prompting has led me to calculate that we can actually get better health care cover for less money (though you are never going to find that out from the call centre people). As you say - it turns out psych is excluded from the usual waiting periods. However - the cost of adding her to our private cover ($1500) is quite a bit more than getting her own cover ($900) and she would cease to be eligible when she gets a job again, so .... 

Yeah if we ever get there I have heard that these various therapies are actually curing quite a few BPD sufferers, though I think it far from certain that BPD is what she has. At the moment the focus is getting her housed and stabilised - and so far it has taken three times as long as usual because of the intransigence of the hospital.

[chemonro]

Maybe you should push to get a second opinion on the diagnosis?

http://www.health.vic.gov.au/mentalhealth/mhact2014/recovery/second-opinion.htm

When psychiatric disorders are diagnosed entirely on symptoms, BPD and bipolar with episodic psychosis might have identical symptoms but very different mechanisms and causes and the appropriate treatment might be very different... 

Sometimes it seems like you have to fight to get treatment....