Another BlueBoard Refugee

@BeeGee I can totally understand you being over student life. I don't quite understand how a bunch of humans can put themselves through the sacrifice and gruelling routine for so many years. Only to spend a career seeing everyone's problems, sickness, trauma and death. There are so much complex rules and regulations as well - and like you have alluded to in your second previous post - sometime you cannot so much as fart without the risk of being sued. That's the debit side of the balance sheet - catching a few babies must be a bit of a buzz and seeing people getting better would be rewarding, plus the scientific aspect of it could be intellectually stimulating and intruiging... and for doctors (unlike you) without compassion and social justice principles, the pay can get pretty good sometimes too 😛

I'm discussing with my pdoc whether to have ECT but because my mood is so high and stable it is hard to justify it just at this stage. Even though I have bad days, my recovery is very quick. I don't know if I mentioned in previous posts that my ketamine dose has been too high the past two times. While the experience might be extremely pleasant its not therapeutic at that level and my goal is to get well (as is the prescribing doctor's) not for me to get stoned.

I'm especially disappointed by the comments of the Manager about the service being for her staff as that was the Manager who had agreed for the service to house a ketamine GP if I could find one. Since our discussion I have come across squandering of scant mental health resources and treatment almost bordering on legal discrimination of clients due to their mental health diagnoses. There are other red flags that have me believing at this stage at least that helping that service find a GP is something to put on the back burner.

I have found a gp who works at the local hospital who specialises in chronic pain. At this stage I think is our best candidate and I will discuss with the ketamine team today. I also have a genetic metabolic illness that creates extreme fatigue and I find all day commute to and from the ketamine clinic by far the most difficult aspect of my week yet it is the most essential aspect of my care.

You would be well placed to know whether the type of meds you are on should take effect by now. It sounds more likely they are antidepressants and as you know they take far longer than mood stabilers to take effect. (Which sucks... hypomania is much more pleasant experience than depression).

(In a brief mention about Don Dale, I was happy to read in the Australian today - a right wing newspaper - pointing out it doesn't take a royal commission to immediately stop violations of human rights. As you say rarely do people in power get held to account. It's only if they have fallen out of favour with their counterparts do they not receive "protection" from accountability. Giles may do that to Elferink but only to save his own political skin.

Hi @GingerWhinger, @BeeGee

Thanks for both of your contributions to this thread, it seems like there has been some really productive discussion and support going on here.

I just wanted to jump in and say that we have realised that some mentions of specific medications (e.g., ketamine) have gone under our moderation radar in the thread previously. The Guidelines don't allow mention of specific medications, and so technically these posts should not have been allowed through - you can read more about this here. However, seeing as they have been up for a little while, we have let the most recent post through, are going to keep the others in the thread.

For all our other users who might not be aware, ketamine is a drug often used for anaesthesia, sedation and pain relief. The Black Dog Institute are currently running clinical trials to determine the safety and effectiveness of the drug for the treatment of major depression (see here for more information).

In accordance with Forum Guidelines, we won't be allowing any further discussion about ketamine or any other medications.

All the best,
supernova.

@Former-Member Thank you for being so flexible about the breach - I wasn't aware of the rule. I do try to comply with the law of the land wherever I am. Can you clarify the rule a little more for me please -

1. Does it preclude discussion about other medical treatments like ECT and TMS although they are not medication?
2. Does it preclude discussion about various psychotherapic modalities like DBT, ACT, EMT, gestalt, etc etc?
3. What about group programs based such modalities or 12 step support groups like Grow or AA?

I appreciate your clarification because being able to talk about treatment and sharing how we are getting well seems to be an important part of peer support.

@BeeGee I explained to the pdoc and gp the difficulty I had attenting appointments due to fatigue. I provided the doctors with the details of gps in my area who may be good candidates to provide the service in my area. I asked them even if they couldn't convince the gps to take up the service fully to others, on the basis of my difficulty getting to their medical care, whether they could they see if I could provide it to me in my local area. They agreed. I still go into the city next week but from there, my care should be transferred to a local gp. As it happened candidate they felt the most promising is a gp at my existing surgery who I already have a relationship. Although he has never been my regular gp he has been fantastic when my usual gp has been unavailable.

Thank you so much for your insights into what a gp's perspective may be. The doctors were very impressed with the quality of the candidates I put forward. That was helped by your tip to go for gps with anaesthesia training or hospital experience. Thank you.

Hi @GingerWhinger

@Former-Member's not around, but I thought I'd introduce myself and have a go at answering your questions. So hi! **waves**

To answer your questions let me start with explaining why we have that certain guideline pertaining to medication: Essentially, it's because as this is a peer-to-peer service, content shared on here cannot be perceived as medical advice. There are particular concerns with medications because everyone is so different and there are numerous factors that need to be considered before starting a new medication such as drug interactions, diagnosis/diagnoses, health, biological make-up and so on. This is why we encourage members to get health professional to make the required assessment before prescribing a medication - it could be harmful otherwise.

In terms of discussing therapies (gestalt, DBT, ACT etc), its ok to talk about these on here. Talking about medication and medical treatments is ok to as long as specifics are avoided, and discussions are general and broad For instance, not naming the specific drug and dosages.

Hope that make sense. Feel free to ask more questions if not.

CherryBomb

Thanks @CherryBomb for taking the time to respond to this.

Of course you are right to point out that everyone's physiology is a little different from each other's and therefore responses to medications will differ - sometimes wildly. There is a fundamental flaw with your logic though - prescription medication is only available in Australia on a doctor's prescription, thus it is not possible to do anything other than "to get [a] health professional to make the required assessment before prescribing a medication". More than "being harmful otherwise" it's simply not possible otherwise.

This is simply not the big scary monster that it can be perceived to be by some. I know that Sane is not the only site to have this restriction - Beyond Blue is the same. On the other hand, DepressioNet and the former BlueBoard do not have this restriction, and to my knowledge this has not proven to have caused any harm. On the contrary, there have been many positive and helpful discussions around named medications that have been of great benefit. Every conversation I have seen in this vein has - without fail - included the caveats noted above, that individual responses will vary etc.

Sane has many great attributes, but this level of "nannying" is not one of them. I encourage the moderation team to revisit this rule to see whether it might be relaxed or removed altogether. I don't believe it achieves the probable intended goal of "keeping members safe" so much as constraining free conversation for no real purpose.

@Kurra @GingerWhinger @BeeGee

Always willing to listen - but can't make any promises. The only promise I can make is that throughout the year we do discuss matters such as this - test our own logics and risks, and why we do or don't allow something.

The risk I see with 'relaxing' the guidelines around medication is that the line becomes blurry. What's okay and what isn't, isn't clear, so it gets confusing and frustrating for members to know what is okay and what isn't.

Can I ask with BlueBoards and Depressionnet where the boundaries were. As a member what did you see as off limits and what was okay to talk about?

Thank you @CherryBomb for you response.

A constructive conversation.

@NikNik I'd maintain that the medication rule is already blurry. Because it it isolating one form of treatment only and that the reasons for the rule would extent to all treatment options. I imagine Sane did not come up with the rule to be restrictive on its membership's discussion of medication for no reason. I am only assuming - but I imagine that there were very real and difficult incidences that made the admin team decide that a medication rule was for the best for the forum and members. I'm not privy to the history.

In rare circumstances when people are very unwell, they will see only their own journeys as the "truth" and dismiss other peoples journeys. It doesn't happen just with medication. For example only some people who had "their lives saved" by voluntary ECT cannot comprehend the trauma others may feel if they had multiple courses involuntarily inflicted on them, that has left ongoing issues for the person. I believe most people who have been helped by a treatment will empathise with and validate people who have been harmed. Similarly, in other rare cases, some people will not own their own traumatic experience as their own and may go on an anecdotal vandetta against the treatment. This is not just isolated to medications - it's all treatments - and it is rare.

I'm an ex social worker. We used to have the occassional sharp instrument fights in our kitchen. Did we close the kitchen off to the clients for health and safety reasons? No. We dealt with the individual incidents as they arose. We continued to teach the great majority of people the important lifeskill of how to cook and did some of our best informal case management in that kitchen. The kitchen was the heart of the facility and to make a blanket rule because of the occassional incident would have disadvantaged all clients. There are always some costs to rules we make - rarely is anything black and white Thankfully now organisation do review the pros and cons to their existing rules, and decide whether they are still relevant, not say "because that's just the way we've always done things".

In regard to Blueboard etc, various forums attract different membership with different personalities and different behaviours. All have their unique incidents to manage and find their own ways to manage what comes up within their membership. Human beings are complex and human beings with mh conditions even more so. I don't know if there is a "formula" that is transportable, although obviously in regards to "drugs", it is important that it be strictly restricted to the use of substances that have been prescribed by member's medical practitioners. That is why I made sure I was talking about medical k, practitioner administered, very closely medically-monitored treatment of my mental health condition.

There is also another aspect of my thread which I think @Former-Member kindly picked up on and that is advocacy. For years I have been active, in various mental health consumer rep positions, attempting to improve the mental health roll out inour high needs community. Increasing treatment options is just one small side interest I'm doing at the moment because I can see the need. Mostly I'm about negotiating with local managers to try to get as much of mental health dollars to hit the community, (not squandered within the services that put there to the provide services).

That is what I do when I am well enough. The other times is hanging on by my fingertips like everyone else.

Thank you Sane for having such an open, honest conversation about this, regardless of what you decide.

Thank you @BeeGee for flagging this discussion for me.

I looked at Depression Net when my son had his episode 2 years ago ... and found that interesting. I uess I can go have another look if needed, but it could be good to have a discussion area on this site. If a whole person plus meds approach is the standard MH ideal ... then it is better if both can be incorporated on the one site. Possibilities for an interim setup could be another large section like the carers forum ... that had limited access but a medical moderator.

I am interested and respectful of the consultation process. @CherryBomb

@GingerWhinger's position seems very convincing to me.

I guess an issue would be having a suitable qualified mod to be able to manage issues as they occur online.

I agree that it is a bit nannying for some of us with enough background that we are not intimidated by all medical issues.

Absolutely. Do what you need to protect the site users and Sane in doing its job. These are early days yet and developing protocols needs thorough investigation.

I will remain interested.