Complaint Respaldo

When I first started at Respaldo, Aruba’s National Mental Health Foundation, I was immediately informed that there probably wouldn’t be fitting treatment for me here on the island. That I’d have to move abroad. Or try to get sent abroad for medical treatment. I was informed that the chances of that happening would be pretty much non-existent.

As residential mobility is my root, unresolved and as yet still untreated trauma, I decided to go for the latter option. Why add to an already existing trauma and make myself worse, when there is another option? One that would allow me to experience returning to a house I lived in, to friends I love, and animals I adore, to possessions that are mine, no matter how slim?

I’ve never experienced that before, and considering my root trauma, I would think that would be a great way to start breaking cycles.

What I’d need for medical treatment abroad

In order to start the procedure for medical treatment abroad, I’d need a written diagnosis. I would receive some treatment in the meantime. I started with my first therapist. We formulated a treatment request specific to me (it’s all about safety). We decided to put off diagnosis until a later date, when my crisis point had abated. We started EMDR, to which I had an adverse reaction (agoraphobia – not the fear/panic kind but the, shit I lied to myself since childhood. I never had a safe place growing up, even though I pretended I did. 40 Years later I still don’t, what now, help!).

At that point my therapist told me he suspected cPTSD, not PTSD as had been diagnosed previously. I started researching cPTSD and found that where other possible diagnosis were missing about 60-70% of my symptoms, cPTSD or DTD encompassed them all.

After the first therapist parted ways with Respaldo, I was put on the waiting list for a therapist who was trauma informed, but usually only treated children. Then her situation changed and she no longer had the hours available to take on new patients. By this time I was getting progressively worse. Both my psychiatrist and my GP told me to write letters of complaint to the Ministry of Health, or the Inspector of Health. I could barely read, let alone retain information. Let stand write anything remotely coherent.

Now, a few years later, so much has happened that I decided to send in a formal complaint retroactively.

Gist complaint

Not receiving treatment that was trauma-informed

Each consecutive therapist decided to try a new treatment, which progressively made me worse. That was taken as a sign of me not cooperating, or faking, or a huge, nasty personality disorder. I had no idea at the time that my reactions, were quite normal in cPTSD patients. Which I inadvertently discovered through a post by a psychologist who also works at Respaldo. One who I have never met, nor communicated with. And whose knowledge about cPTSD had apparently not been shared with my therapists.

Instead of actually listening to me, I was placed in double binds, which was very triggering to me. Definitely another untreated trauma.

Move out of your house, or forgo treatment. Better yet, move away from Aruba.

I’d been here before, chosen the treatment over the protection of self, in my early twenties. I got worse instead of better. After which that treatment center admitted they had been wrong to force their protocol on me, considering my background. Yet twenty years later, I was placed in the same situation. And this time the therapist decided that there was no point, I should just be passed onto the next therapist. Que more months and months of waiting with no therapist.

Participate in this therapy, even if you don’t think it’s a good idea, or we won’t assess you.

As I needed the assessment to start the procedure for medical treatment abroad, I chose the assessment. The therapy not only made me worse, it skewed my assessment, and was never completed, so I got to deal with the effects of reliving traumatic events as ‘homework’, on my own.

Let’s try EMDR again! Action is what’s needed

After one session of EMDR, that therapist informed me that she didn’t feel qualified to try EMDR after all, and that we’d have to postpone it till she found someone to advise her.

“Oh, and by the way, did you know that hypercognition is perhaps a sign of a spectrum disorder? You should read up on that!”
“It’s also part of my normal personality profile and trauma disorders. And the last therapist saw it as a sign of a personality disorder.”
“Oh well, women are often misdiagnosed when it comes to spectrum disorders!”
“Could we please look at complex trauma and cPTSD before we go down this path?”
“Well, that’s not my area of expertise. But I firmly believe in taking action when it comes to therapy!”

Rather unsurprisingly, I got worse yet again.

This last therapist promised me I would receive support until I left for treatment abroad. I was then informed I wouldn’t be getting any support. Now, as a stop-gap, I speak to a nurse every other week if she’s available.

On being told I was the captain of my own recovery

Nice in theory, but when what I wanted didn’t follow ‘established protocols’ it was not an option. I was captain of my own recovery as long as they were in line with what Respaldo’s protocols were.

On following the complaint procedure consistently, without effect

At various points during my ‘treatment’ I did as Respaldo asked. When things went wrong I talked to my therapist, or the case manager, if I had been assigned one. Or both, if the situation called for it. At various times, various agreements were made in order stop the same things from repeating themselves.

It turned out I didn’t have a back-up case manager, nor a treatment plan. I vaguely remember starting one with a nurse. Can’t remember what happened to it.

One after the other each therapist or support staff who was assigned to my case, either suddenly left the organization, were reassigned or I was suddenly reassigned, or…well honestly I lost count at a certain point. Each time I was assured the next one would deal with the complaint, or looking at cPTSD, or the diagnosis, or the treatment plan.

I did get okay-ed for medical treatment abroad, after I had to start a LAR procedure (procedure to force the government of Aruba to finaly answer the request for medical treatment abroad, after it had been left on a desk at a legal department somewhere) against UO AZV (our national health insurer) myself. But apparently I was not okay-ed for treatment of cPTSD. I only found out about that during my online intake with the treatment center abroad. That led me to realize that the agreements I had made with the assessor before she suddenly left, had not been adhered to either.

The official complaint

Enough is enough. After 5 years of receiving barely any support, my request to rule in or out cPTSD having been completely ignored and my initial treatment request being ignored in favor of treating…?

The therapies I did start in order to maybe get the written diagnosis I was promised made my condition progressively worse. Having to tell each therapist my story over and over again, while losing more of myself and what little faith I had left in possible recovery, was well, mind-numbing.

Every single effort I made to discuss what was happening, even with the help of dissertations and medical publications, were ignored or trivialized.

I am fed up. And I am now capable of writing semi-coherently again. Plus it takes me less effort to read and understand things like Respaldo’s complaint procedure.

The complaint procedure

The procedure states:

1. talk to whoever is treating you, or who you have a complaint about. Check. Done that for 5 years.

2. If that doesn’t work, go to their supervisor to talk.

Check, done that for years as well. Their supervisor is my psychiatrist, and though we didn’t have a lot of contact at times (I’m not particularly medication heavy, or the meds that we’ve tried had no, or adverse effects), he always handled the situations correctly and swiftly. But there really wasn’t much he could do about people suddenly leaving the organization, the waiting lists being long, no availability when it came to therapists or departments being downsized or closed.

3. If this doesn’t work, send in an official complaint.

Issues with the complaint procedure so far

The first issue, it’s in Dutch. And writing or reading in Dutch, when it comes to personal things versus business letters, is far from a skill I possess right now. Non-deterred, I filled in the form, and pressed send. Then…nothing. I knew Respaldo had to reply within 5 days from the date of the complaint, but I had no proof that I actually sent in the complaint.

So I sent an e-mail with the question to please confirm receipt, and, if possible, try and reply to the content of my complaint asap.

And that’s exactly one of my recurring issues with Respaldo. Even when I did make agreements with the various therapists, nothing would ever be put on paper. If I’d refer back to the conversations, I was told there was something wrong with me, for not trusting them. Even when they did agree that mistakes in this vein had been made often before, acknowledged that my ‘mistrust’ was justified, not an ‘inherent flaw in my personality’ as they kept saying, their solution just never materialized.

Their solution was to promise I’d get written confirmation, or that conversations would be recorded, or summaries of conversations would be recorded in voice notes.

I’ve never actually received any of them.

So besides the factual complaints about my treatment question being largely ignored, and that I apparently still not had an actual psychological assessment that even considered cPTSD, I also complained about the fact that Respaldo:

a) just doesn’t do well when it comes to adhering to their own agreements, nor
b) when it comes to handing over clients and their complaints when the next therapist or case manger finally becomes available
c) and that communication skills at all levels could use some work.

Examples of that last one?

I was told I had been removed from the waiting list because my paperwork was not in order, and that I would be moved to the back of the list until I rectified it. After a frantic call to my psychiatrist I was assured it was rectified

On multiple occasions I have been informed that I was expected for an appointment at Mahuma. When I could barely manage to set a foot outside my own bedroom door. Not very helpful.

I was offered support through FACT, but the condition of continuing to receive therapy through FACT was moving out of my house. This was communicated AFTER I had already been assigned to FACT.

I was removed from FACT without explanation, despite still barely being able to leave the house. I still don’t quite understand how a condition that studies now show cause the brain to develop differently, which can cause life-long physical effects, is not considered to be ‘heavy’ enough to be part of FACT.

When I did receive help at home once every 2 weeks from a nurse, she was reassigned by my therapist, without informing me or discussing the reasoning. Having help at home would somehow interfere with my therapy?

The nurses didn’t cause my condition to worsen, and they at least did what they said they would do.

It’s even worse than expected

After I sent in the complaint I informed my psychiatrist that I had finally done what he had suggested years ago. I explained what I had sent in.

He then admitted that:

a) he was unaware that my first therapist had suspected cPTSD
b) none of the subsequent therapist suspected cPTSD, but did mention either personality disorders or a development disorder (spectrum disorder specifically)
c) that he was unaware of my initial treatment request

I went a little bit mad at that point to be honest.

My mind started racing, my old survival mechanism of shut out all feelings, go numb, endure, and fix the crisis at hand ASAP, kicked into high gear. I started asking question after question. When he asked me how to even diagnose complex trauma, the importance and weight of that question even passed me by. I was so focussed on what I might still be able to confirm. I knew I had plenty of old e-mails with proof of a lot of what I had been saying, so I told him I’d send him an e-mail with the info I had.

Into my old archives I went. In e-mail after e-mail I kept referring to 2 things: my initial treatment request and the request to either rule in our out cPTSD officially.

I found e-mails where whatever symptom the therapist had told me was part of a personality disorder or spectrum disorder, was answered with research that also put those symptoms squarely in trauma disorders. With the request if we could please make time in the next session to talk about it.

Never happened. Instead we’d talk about how this was an example of my distrust of authority, how that was inherently wrong, it would get in the way of my relationship with my therapist and would I just accept that there was something greatly wrong with my personality that needed to be fixed ASAP.

And then I found an e-mail which caused me to freeze in disbelief.

Psychological Assessment – negligent or unethical?

I had sent an e-mail with the agreements I made with the assessor as to the 6 week period of my assessment.

Something had always bothered me about the whole situation. I’d had a proper assessment done in The Netherlands in my early twenties. The way this assessor handled the assessment was so different. When I tried to talk about it, I was told in no uncertain terms that she had the highest degrees in when it came to diagnostics, and that I should trust the ‘authority’. Again – flaw in my personality, e.g. see! personality disorder (she had explained to me early on that was her specialty, and she didn’t really treat anything else).

Okay. Yet at every stage I kept checking.

“I have an issue with filling these forms out in Dutch. I know there’s a disconnect somewhere.”
“We’ll go through them before the final report, to make sure you understood correctly.”

“Do I fill in the forms as I feel now, after you’ve asked me to artificially recreate feelings of anger as part of my homework assignment, in anticipation of ‘angry child’ therapy, which you want me to do after the assessment? Or should I answer them as I feel when I’m not artificially holding onto anger I don’t feel, or even have never felt? In the meantime why do I need keep holding onto that anger when the only way to do that is to suppress other feelings which is a known unhealthy coping mechanism I (mostly) got rid of in my early twenties?”
“Fill them in as you feel now.”

Every time I was told that this was part of my disease, my issues. “Trust me,” and “you’ll be able to review my findings before I turn in the official report” were repeated. In the meantime I was getting progressively worse, due to a variety of reasons, including suppressing emotions in order to fulfill my promise of ‘doing the work, and trusting the process’.

When she sent me the draft report I was astounded by her findings and conclusions. I wrote down everything, from factual mistakes in the report, to rather glaring omissions, to, again, that most of her findings were symptoms of cPTSD as well. Plus that we were still supposed to go through the lists in English.

When she called to review the report with me, she informed me that she was leaving the organization to return back to Holland. That this would be our last session. We wouldn’t be able to review the lists, but that that was fine. She promised to add my commentary to the final report and then hand it in to be used to ask for medical treatment abroad.

The aftermath

After my waterfall of forwarded e-mails and questions, my psychiatrist provided some answers. He explained certain things about Respaldo, especially about its staffing and administrative issues.

He explained about the norms and protocols they followed. He admitted that maybe judging me by established norms, when my norms considering my background and environment are very different, might not have been the best tactic.

That adhering to the set protocols, even when their own colleagues knew that those protocols might work adversely for cPTSD patients, was perhaps a mistake.

He explained that even if the first therapist had confirmed cPTSD, that for a whole plethora of reasons, they trusted the assessor more. I countered that the first therapist actually took my norms and background into consideration.

He actually spoke and understood my first language instead of losing things in translation. He took me as an individual into account, my background and environment. That he knew that what’s considered abnormal by Dutch or American standards, is not abnormal by international standards, or mixed ethnicity standards, or mixed cultural standards.

I am still waiting on my request to receive the ‘finalized’ assessment report to check if any of my notes have been added to the report as promised. I have asked for the promised recordings of sessions or the summaries. I have asked to be sent a copy of my file to check if at any point in time my complaints to the individual therapists and my constant requests about my initial treatment question and diagnosis regarding cPTSD have actually been added to my file.

Contact with the official complaint mediator

The mediator did e-mail back and call after 8 days. The delay had been due to technical issues with the email address. She explained that she only works at Respaldo on Wednesdays from 8-11 AM. She asked to make an appointment for the next week. She told me I didn’t need to write everything down again, that she’d look into my complaint and the link I had sent in my e-mail. I told her I was going to write it all down anyway, not just for her, but also for myself.

She indicated that communicating in English wouldn’t be a problem.

So now, bit by bit, I’m pouring over every e-mail I wrote. I’m going through old notebooks page by page, to find all my notes from all the various sessions and phone conversations. At the time sending e-mails with questions, and confirming what we’d agreed upon was draining. But now I’m so glad I forced myself to do so. Because if I would have taken Respaldo at their word, and trusted them that everything was handled, I’d have no proof whatsoever. Just my word against a whole slew of therapists who no longer work at Respaldo.

But it’s exhausting, and time consuming, and honestly, by now, even if I found every single note and correspondence back, what is the point? Plus I’d rather spend time on things that are positively impacting me right now.

The thing that did bother me about that conversation was the following. Three of the four therapists I named have already left. When the mediator mentioned that, I pointed out that my complaint is about the organization as a whole, not necessarily each individual therapist. She then asked who my psychiatrist was, and wasn’t he their supervisor?

Again, let me make one thing clear. He is the ONLY one, who at any point in time, acknowledged that mistakes had been made, did as much for me as he was able with the limited resources at his disposal, consistently took responsibility for his role in whatever issue was at hand AND never, not once, blamed anyone else, nor tried to justify anything.

The final complaints

How do you establish complex trauma or cPTSD?

The question. How do you establish if it’s a question of complex trauma or cPTSD? I don’t even know where to begin. A lot of the research I have gathered over the past 4 years, since my first therapist suspected cPTSD, which has been recognized by the WHO in its ICD by the way, I have sent to Respaldo. With specific questions about complex trauma and trauma disorders.

Most of those questions were left unanswered at the time. So I dug further, and read more, studied dissertations and analysed studies. Put things in piles according to how well documents were researched, and if I could confirm things using their references. If studies were large enough to draw conclusions, or if there were other studies confirming or disproving their conclusions.

Things I felt absolutely unqualified to do. But as I got no reply from those who were qualified, I kept pushing on, even when all I wanted to do was give up.

I still have a ton of books, articles and research to go through. It would be nice if I didn’t have to do that alone anymore.

All I can do, and have been doing, is just keep adding all the information that I gathered over the past 4 years to this site, and hope that someone, somewhere, can use it to prevent similar situations.

Norms, norms, norms

Last but not least: please stop using the DSM-4, it’s known to adhere to norms that don’t take culture, ethnicity and language into account. At least the DSM-5 tries to rectify that. I can’t exactly judge how those norms fit when it comes to Aruba. A country where hardly anyone is norm-conform when it comes to culture, ethnicity or language. But at least it’s better than knowing culture, language and ethnicity have not been taken into account at all.

And as I don’t even fit in the norms of Aruba, well, I honestly don’t know anymore.