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Staycalm
Casual Contributor

Stuck for Ideas while we wait for Spectrum

I am looking for advice on whether our daughter will get any benefits from having private health cover.

 

My husband and I are carers for our 18 year old daughter with BPD, anxiety, depression and probably complex PTSD. We've had a lot of ups and downs since she started struggling with her mental health at 13. My bright lovely girl left school at Year 10, can't find paid work and struggles to get to her once a week volunteer shift. She has pretty much no friends, having managed to alienate most of them over the years and is now going through a painful breakup with her boyfriend who can't cope with her self harm,  suicidal ideation and continuous dramas with him and his friends.

 

She started with support from Headspace, had two admissions with Origin and two admissions to Royal Children's mental health unit a few years back. Since then her long term psychologist moved out of private practice and it's taken months to get her a new psych, who she's only seen twice but seems very good. 

 

Her mental health has been spiraling down since Christmas and the last two weeks have been horrendous with self harm and actively wishing to die. Initally we took her into emergency, where she eventually got to talk to a mental health person. She had calmed down but after we got home she went hyper and caused the final breakup with her boyfriend. Since then we've called the ambulance twice, having them not come the first time while she screamed and got so hysterical I thought she was going to have a stroke! The police ended up arriving at 3am, which was incredibly unhelpful. After two hours of this she exhausted herself and we were able to get her to take a mild sedative.

 

The second time they came and were fabulous and took her and me to hospital but then she was left in the corridor for a couple of hours, crying and having panic attacks while a dozen paramedics and four police just hung around. Finally she was admitted overnight for observation in the Behavioural Assessment Unit and was released at 8am with no aftercare advice or support.

 

At her first hospital visit we were told about Spectrum and how it can provide the proper therapies for her BPD and so we got a referral from her wonderful GP and she faxed it all off. I thought I should also ring them to see how the process was going. Imagine my horror to discover the waiting period is 6 to 8 MONTHS!! 

 

So here we are. Exhausted, confused, sad and frustrated. I've had to take time off work and will have another 2 weeks of leave but what do I do after that? She's actively suicidal, even if there haven't been any serious attempts. Neither of us trust her on her own at home right now.

 

So what do we do now? She's booked to see her psych fortnightly and they will need to work to develop some sort of crisis plan I imagine. We now know that in general, going to emergency or the ambulance is not the solution and she was told in no uncertain terms that a psych ward is not going to be suitable for her.

 

We are considering getting her private health/hospital cover if that will get her access to more services. What experiences do others have with this? We've never been able to afford family cover as I only work 11 hours a week and my husband works 4 days a week. I just don't know where to go now. I would appreciate advice.

17 REPLIES 17

Re: Stuck for Ideas while we wait for Spectrum

hello and welcome to the forum my friend @Staycalm 

thank you for sharing and remember that you are not alone my friend 

how are you and your family going today xx

@Former-Member, @Determined@greenpea@BlueBay@Faith-and-Hope@eth@outlander@nashy 

Re: Stuck for Ideas while we wait for Spectrum

Hi  @Staycalm  and welcome

Sorry to hear  things are so hard for your family at the moment. 

I support my wife who lives with BPD

We have been married 20+ years and have 3 children.  

We have had a few rough patches like you are describingover that time. While it is a struggle we have found that for us private health cover has been essential. Kind of dreading our upcoming premium but too scared to drop it.  Our worst year of crisis my darling spent over 4 months in a private mental health ward across 6 admissions. Most of that was under supervision due high risk.  There have been 10+ (don't want to remember really exactly how many) admissions over the past 5 years. 

We (I) initially tried to get a public admission but like you were told it was not suitable. That was when we had to make the private health cover work. I only work part time combined with centrelink benefits so it is a stretch. 

Finding a good psyc has been our biggest challenge. When we found one darling refused to go due to the 2 hour round trip to visit. (We are semi rural so local services area bit thin).  Unfortunately there are No easy answers 😔

Hope that ramble was of some help. Happy to listen and answer any questions where I can. 

 

Re: Stuck for Ideas while we wait for Spectrum

Hi @Staycalm  i am sorry to read what you and your husband are going through with your daughter. I can understand as I have BPD. 
I was diagnosed 10 years ago at age 44. Very difficult fir me and my hubby and three adult children. 
ive been in a public hodpital by ambulance a few times. They were very good. 
but I do have private cover and go into a hospital once or twice a year. 
I have been to spectrum last year and did a acceptance and commitment therapy one on one fir about 4 weeks. 
I feel if you can find a great psychologist where your daughter can talk to would be good. 
I feel for you as a mum myself I would be worried. 
I hope you can get some help fir your daughter. 
happy to chst anytime. 

Re: Stuck for Ideas while we wait for Spectrum

It's bad tonight. She's been cutting and has messed up her arm. Rang the CAT team but she won't talk to anyone. We are so tired. She saw her psychologist today but she still doesn't have a crisis plan. Another two weeks before her next appointment and I'm dreading every day.

Re: Stuck for Ideas while we wait for Spectrum

@Staycalm  feeling for you at the moment.

Hard to know what to say at times like this, 

I know though when my darling was going through this having someone to listen helped more than any words so here listening. 

Re: Stuck for Ideas while we wait for Spectrum

ohhhh @Staycalm  thinking of you lots today my friend xxx

how are you xx

@Determined@BlueBay 

Re: Stuck for Ideas while we wait for Spectrum

Hugs @Staycalm ❤️ I really feel for you. 

Re: Stuck for Ideas while we wait for Spectrum

Thankyou everyone. We had another ED visit last night and she was kept overnight at the BAU. We are slowly working out what needs to happen, hopefully, and will try to not think too much about what an uphill battle it's going to be.

 

I broke down again yesterday after getting an invoice of over $1200 from the ambulance because we didn't know she wasn't covered on our family plan as she's not in fulltime study. That is more than I earn in a fortnight and It just seems so unfair that, because we are stuck in the middle of this nightmare, trying to get help, we are struggling to keep on top of all of this financially as well. The person I spoke to at Ambulance Victoria suggested we get her registered at Centrelink but the thought of all that paperwork and process is the stuff of nightmares! We have had the form for her to get her own medicare card printed out for weeks but haven't been able to get it done because we've been trying to keep her alive.

 

Medicare only covers half of what we pay for her psychologist and she's had 3 visits of her 10 already. We have got a referral for a psychiatrist so that's coming. Thankfully her wonderful GP is bulk billing her appointments at the moment. Most of the quotes for private cover are around $50 a fortnight for the initial cover and then in two months we do the gold upgrade which will double the cost but theoretically opens up the private psychiatricservices. She needs it desperately but it's going to hurt us financially.

Re: Stuck for Ideas while we wait for Spectrum

Hi @Staycalm, I realise it's been a few months since your post but I am new to this forum so only just came across it. I can relate to your post as I also have a daughter with BPD, she's 17. 

Just a quick run down - my beautiful, happy, intelligent, emotionally attached daughter started having difficulties at 13, we first became aware of her self harm and eating disorder at 14. We also started at Headspace but were quickly transferred to a high care multi disciplinary team. My daughter was/is not receptive to talking and refuses her diagnoses of BPD. Long story short - after seeing a private psychologist she advised we get Private Health Insurance to cover Top Hospital, my daughter was admitted to a private facility the night of her first appointment with the psychiatrist and it was the worst decision we've made! She spent almost 5 months in hospital and was worse by the end.  There is a reason why you've been told hospital stays are not ideal for people with BPD - her psychiatrist refused to believe this and wanted her to become dependant on him!

I realise all doctors are different and all situations/experiences can vary but I would be very careful of any suggestions of long term hospital admission.

We are back with the public system and I have been very happy them but it's come to the time that they cannot help us anymore until my daughter decides to talk so we will be on our own soon which is very scary! 

Good luck to you - I know how incredibly difficult it is!

 

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