Support groups - what should be said/done there?

Crowsister - Hope your appointment goes well tomorrow, will you let us know? A support group that doesn't support patients can't really be called a support group, can it? :-)

Sorry about the links that didn't work, but am glad that you found some new resources and I hope you hear from those you wrote. It's a tedious process sometimes but it's critical in order to advocate for yourself.

We're happy to help, and looking forward to your report on your visit with Dr. Gee.

Take care,
Pat

Thank you very much Diane and Pat. I am still reeling around in my mind. Tomorrow I see Dr Gee for the second time and 'have it out' with him over the support group at the hospital he works at.

I have checked out all the links that I have been sent, some places I already knew about, and had heard of, some I did not. Some no longer work, or when I get in, the people are no longer there - email addresses that do not connect any more. I have notified the sites where possible that their info is incorrect - that is the Web, eh!

I am now awaiting replies from some places, and will see what transpires.

I really appreciate the time and effort you have gone to - thank you so much.

Crow

Crowsister,

Pat gave you tons of wonderful information, and I hope that some of it is a big help to you. I just wanted to add my voice in supporting you. I am astonished that more concern and respect was not paid to your disability and that you were expected to climb stairs, etc. This seems insensitive at best and dangerous for you at worst. And then on top of that to have had a traumatic experience within the group makes my heart go out to you.

You are not being selfish or unreasonable. From what you write, I can tell that you are an extremely smart and thoughtful woman who is doing a good job of managing both physical and mental challenges. It's not easy and yet you work hard at it and you don't give up. You should be so proud of yourself for this. And I hate that your good efforts took this difficult turn.

Please stay in touch with us. And don't give up on finding the care that's best for you. I think you are awesome.

Hi again Crowsister - First, I'm in the states and please understand that I am hitting some of this information cold but will do my best to share what I'm able to find with you.

In terms of the private insurance, which you said you pay for in order to get the specific care you need, I found information about an ombudsman service to help sort out patient issues.
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Private health insurance is provided through organisations registered under the National Health Act 1953. There are two types of private health funds: restricted membership organisations (such as employees of a particular firm or industry) and funds open to the general public.

Private health insurance funds are registered with and monitored by the Private Health Insurance Administration Council, a statutory authority. Private health insurance providers adhere to the the Private Health Insurance Code of Conduct, a voluntary, self-regulatory industry code.

The Private Health Insurance Ombudsman deals with inquiries and complaints about any aspect of private health insurance. The Private Health Insurance Ombudsman is an Australian Government agency but acts independently in dealing with complaints and is independent of the private health funds and health service providers.
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This link goes to a directory of services to assist patients: http://www.healthdirectory.com.au/Complaints:Legal/
This list includes this:

Health Quality and Complaints Commission (HQCC)

Brisbane, QLD 4000
The Health Quality and Complaints Commission is an independent organisation dedicated to improving the quality and safety of health services in Queensland through:
- setting healthcare standards
- monitoring health service quality
- independent review of complaints.

TTY 07 3120 5997 Toll Free 1800 077 308 outside Brisbane metro

Office of the Adult Guardian

Department of Justice and Attorney-General (Queensland)

Brisbane, QLD 4000
Protecting the rights and interests of adults with impaired capacity.

Phone 07 3234 0870 or 1300 653 187 (outside Brisbane)

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I also found a resource that may be able to help with issues related to the public healthcare system. http://www.nhmrc.gov.au/contact/index.htm

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Here are some links that may help in finding a support group that will meet your needs:

http://arts.monash.edu.au/behaviour/dissociation/index.php

http://www.dircsa.org.au/factsheets/dissociative-identity-disorder/

http://www.blackdoginstitute.org.au/public/gettinghelp/supportgroups.cfm

http://www.arafmiqld.org/

http://thelocaltourist.com.au/seq/Organisations/Chronic_Disability.htm

http://www.mentalhealth.org.au/MHAQ/About_MHAQ.html

http://www.health.qld.gov.au/pahospital/qtmhc/

http://www.womhealth.org.au/

An article I found along the way - http://www.abc.net.au/local/stories/2009/09/30/2700861.htm

Hope today was a better day for you, and that these links will prove helpful.

Take care, Pat

Thank you. This may take me a while but I will get back to you.

In Brisbane.

Crowsister - You are in Australia, right? Let me know what city and I will do some research for you and see if we can help.

I am taking a break from my Psychiatrist because he would lose focus so often and wander into his own stuff - so much so that I used to get really uncomfortable and upset. My GP knew about this, as did the Psychologist I see as part of my GP Mental Health Care Plan. The Psychologist used to give me strategies to try to bring the Psychiatrist back to dealing with my issues, and help me to understand that I was not being unreasonable in expecting that to be his focus. But I have lost patience - this has been a problem with him for over 10 years - so much so that I have 'walked' several times before. But I still need help - I really need help. I have a lived experience of abuse that needs addressing, I have Dissociative Identity Disorder, which needs specialist help - I struggle with suicidal ideation and I cannot allow myself to become desperate. The hospital that I used to attend have a day group also, but they make no allowances for people whose hands and body do not work properly at all - and I get very angry about that. I keep medical insurance because the Public Hospital system does not treat DID, so that I can attend these private hospitals who do run groups and support, but even though I am paying $250 a day I cannot find a place. To be fair, i have only tried two - but th eprocess of trying is gruelling - going to new places, all the new people, all the assumptions about my body and the questions I really don't want to answer. People are curious - "What is wrong with your hands/back/legs?" is a common question that is very hurtful and embarrassing to have to answer in a group of strangers. I guess that I feel that just because I am mentally ill and disturbed, does not mean that I should not be treated with respect. And just because I have physical disabilities does not mean that I should be treated as having no intellectual function. Because I advocate for women's rights, for mental health rights, for rights for folk with a disability, I get very steamed up. I don't know what to do, I cannot talk this over with anyone, because there is no one. I need a social worker, or a case worker, someone, anyone, to help me overcome the problems with my housing, with my illness. I just have no where to go with all this. My GP is very kind and supportive but he does not know what next either - and I hate going to see him often, avoid it, because I don't want to appear needy and pushy. I already know that the receptionists at the doctor's surgery have me marked as a permanent double appointment - which is okay, but embarrassing when I am standing at the counter and they are quite audibly seeking a space where they can make a double and the rest of the waiting room is listening and looking at this woman with her Rollator and hand splints and I feel about as conspicuous as a nude woman in a monastery. Sorry - just about losing it today.

Hi Crowsister - You're not expecting too much and you're not being unreasonable. It's disturbing to read your account of the meeting, and I wasn't even there. First, the lack of appropriate accommodations for a disabled person would make it an automatic no for me. Second, the facilitator of the group clearly had no consideration for your needs.

Finding the right group is a process. In order for it to be beneficial it needs to be one in which you are personally comfortable and will be able to do the work that you need and want to do. Sometimes it can take going to multiple groups before finding the right one, but it's worth it to not be harmed from being in the wrong one. The descriptions you've given of your impression of this group, and reactions to it, would seem to indicate that it would not be a helpful or comfortable environment for you. Do you have other options, either in your area or online? Is it possible to go back to your old group? Do you have an interim resource to go to for psychiatric care if needed, such as a clinic?

Subjecting a person who has been through a traumatic situation into another person's trauma can be deeply disturbing and in some ways is like being violated all over again. You have every right to expect to get support, not an experience like the one you had. I hope you will be able to find what you need and deserve.