Topic Tuesday // Feeling excluded in a loved ones treatment journey // Tues 21 Aug, 7pm AEDT

[CharlieBravo]

I can relate, but I'm here to learn what's worked for others.  I find the wall erected around the therapist and their patient to be virtually impentrable to the family.  And if you attempt to penetrate the wall by trying to pass what might be crucial information about the patient on to the therapist, they constantly quote "Patient Privacy", even though you aren't asking for info, you're simply providing info!  The problem (in our case) is that the patient doesn't want the family to know what's going on!

[Adge]

Yes I can very much relate to that @Lynne1

Feeling unable to find ways to be (or feel) heard, especially by service providers.

I'm unable to think of any advice to help, at this stage.

Adge

[CharlieBravo]

I've asked therapists whether they're aware of the US experience which tells a story of improved patient outcomes when the family and support group rallies around the patient and gets involved in their recovery, and they just go blank.  My concern is that therapists consider the condition a bit of a "dustbin diagnosis" and dislike treating it, let alone having to be involved with familes, too.  Anyone else feel like that?

[CharlieBravo]

Sorry about the spelling BTW I am trying to type quickly to keep the conversation rolling...

[Former-Member]

Sounds really frustrating @CharlieBravo Particularly given that outcomes are often improved when family and carers are involved in a persons treatment and recovery. 

[Lynne1]

Well said, Charlie Bravo. There are quite a few papers on how a service provider might use privacy concerns as a way to avoid engaging with carers, it's not easy for them in many cases. At the same time, when service providers have explored why this is the case, they say they feel caught in the middle: that they have been working with the client towards building trust, which is often a sensitive and difficult task ... the service provider doesn't want to risk this trust. In my experience though, there are many ways to engage with carers without risking trust. 

[CharlieBravo]

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@Former-Member wrote:

Sounds really frustrating @CharlieBravo Particularly given that outcomes are often improved when family and carers are involved in a persons treatment and recovery. 

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Do the therapists generally seem to know that, though?  I get the feeling they think the patient is better off dealing just with the professionals.  They seem to forget who carries the can the other 167.25 hours of the week when the patient isn't sitting in their office.

[Lynne1]

That's so true Margot. It's about moving from the old model of service provider as expert towards seeing carers as partners towards recovery. 

[outlander]

thanks @Former-Member @Lynne1 for arranging this chat
i need to duck out though, some of the words are becoming triggerring for me. will try to read a little later

[Lynne1]

Charlie Bravo, you've summed up the topic, feeling excluded in a loved one's journey. I've felt that way too. Service provider training is changing though, and are becoming more aware although it can seem like a slow process. More on that later!