A New Chapter – A New Strategy

New strategy

Before I begin, I’d just like this say a few things. First off, I’ve met my new nurse two times now since I first started writing on this post. This has made me realise I won’t get all the help I need from the healthcare system in Sweden. It’s pointless trying to reason with the people at these clinics, they don’t care, they’re overworked, they misdiagnose. They suck. And it is not just me that thinks so, it’s a fact.
https://www.tv4play.se/program/nyheterna/3961274
https://www.unt.se/nyheter/uppsala/psykiatrin-far-kritik-nationellt-4376189.aspx
https://www.unt.se/nyheter/uppsala/psykiatrins-hus-far-hard-kritik-av-patienter-2417702.aspx
https://www.svt.se/nyheter/lokalt/uppsala/kritiserad-psykiatriker-anmals-igen
https://www.tv4.se/nyheterna/klipp/fortsatt-kritik-av-psykv%C3%A5rden-i-uppsala-3961274
https://www.unt.se/nyheter/uppsala/nu-granskar-vi-psykiatrin-igen-4339960.aspx
http://www.lakartidningen.se/Aktuellt/Nyheter/2015/04/Arbete-i-kontorslandskap-far-kritik
https://24uppsala.se/sjukhus-far-kritik-efter-sjalvmordsfall

My personal favourite

In 2015, a man, 45, attacked his nine year old daughter her mother with a knife – the woman survived, but the child didn’t. Mere hours previous to this, he went to the psychiatric unit to get help urgently. They didn’t deem it necessary and he was turned away.

Anyway, if I don’t get consistent help with my new contacts, I’ll tell them I want minimal contact so as to not remind me of how ****ing useless they are.

I’ll figure this out myself or die trying. Maybe I should have realised this a year ago, but I was still hoping I’d get help. Maybe I was naïve; maybe I made the same mistake I did and have done for the past 15 years. I don’t know. But enough is enough.

I’m going to try and start a new chapter, I’m working on setting up a new blog. I’m not sure if I’ll make it, but I’ll try.

Even though I give up on reasoning with them, I will go over their heads and force a change on a higher level, to the extent that I can.

Moving on…

I finally got an appointment to the psychiatric unit…

And it was a catastrophe in the beginning, although towards the end, it got better, but… Unless the psychiatrist changes her way of thinking significantly, I won’t get all the help that I need.

So, this far, so bad. Then she says we need to separate these two things – physical and mental. It’s ironic, seeing how the best treatment for depression is to exercise, have a good diet and getting enough sleep… I.e. physical things.

I might get help – with certain things

I might get help for my PTSD, or my depression, I’m not sure. Thing is, she didn’t know I had the diagnosis PTSD. This is because I apparently don’t have one.

You see, I did a screening, which doesn’t diagnose you. It just gives you a general idea of what’s wrong. And at my last meeting with the nurse, a couple of weeks after the meeting with the psychiatrist, she couldn’t find it in my records…

Hopefully I’ll get help with the depression a bit, but I’ll still have fatigue. How should I deal with this? I’m trying on my own but getting help would make a difference. It’s like most illnesses most people get – you’ll survive without help, but you may never heal fully, or you may suffer unnecessarily. Her suggestion was that doctor Else, Someone should help me. Not them though, most definitely not. Perhaps my local health clinic should. Which, for those who have read my previous posts, isn’t a good idea. My local health clinic refuses to help, as I’ve mentioned. Just a few months ago, they referred me to the Church of Sweden for counselling. And no, this isn’t a joke.

So, I just now got a psychiatrist specialised in depression. Depending on how you look at it, I’ve been waiting for a year, at least. I had a nurse I went to before this, but she switched teams, from the team specialising in depression, I had no contact what so ever with them for months.

Anyway, during the first meeting with my psychiatrist, she said every single thing she shouldn’t have. I can’t remember everything because the first 15 minutes, every word coming out of her mouth was just a cliché I’ve heard so many times. Something that most survivors have heard, something we laugh about – because what else should one do when faced with such utter incompetence?

Words from my mum, dying of cancer, during the meeting

My mum was there – after listening to the psychiatrist’s deflective responses she said that, “I’m dying from cancer; it’s only a matter of time before I’m dead and I would like to know that my son will be getting the help he needs before I pass.” Mum went on, telling the psychiatrist that if they can’t help me with these issues, who can? They are supposed to be specialists in psychiatric care.

She also brought up of funny story. Sweden had an election (relatively) recently and local politicians went around knocking on doors, hoping to get voters’ attention. We spoke about the issues our family have with the healthcare system with these politicians, and specifically the issues I’m having with the psychiatric unit. I didn’t even have to tell this politician which sub-unit at the hospital that I was getting treated at. She just said, “OK so you’re at Affektiv mottagning 2?” (Affective disorder patient facility 2.) Yeah, they’d heard about them…

Let’s get back to the meeting to the psychiatrist though.

Basically, the psychiatrist knew nothing about the situation I’m in. Which is fine, but not when I have to lecture her for 15 minutes to get through to her. On top of this, she hadn’t read my medical records much (she said so herself and it was noticeable). She said that, “You’ve been having issues with depressions…” To which I replied, “Yeah, and diabetes, damaged pancreas, epilepsy, fatigue etc.” But that was totally not important, at all! No, it’s the depression we’re treating, and it has nothing to do with that. Like, at all. And I didn’t have a diagnosis of fatigue. The only two diagnoses I have are depression and a “crisis reaction” in 2012. What’s frightening about this is that this can easily cross over to PTSD and should be treated promptly if the issues remain. Often, they say, according several sources that the patient doesn’t realise they need treatment, which makes things worse as it gets worse and worse. So yeah, making the assumption that the same applies when the healthcare system doesn’t realise it makes this grossly negligent on their part. But then again, they let a man kill his own daughter so what can you expect.

Educating a doctor

Either way, the meeting went on for a good while. She didn’t believe me initially when I said that I’m not getting help from anywhere else with most of my issues. She suggested that there might be some patient advocacy groups I could go to to find help… Yeah, there are, and I’m highly active in one and very familiar with another… And no, the chance of getting help is slim. Also, the mere fact that they’re referring patients to charities says a lot in and of itself.

I told her that I’m a member of the YCE, I’ve travelled to four or five European nations, going to conferences regarding our issues as survivors. I’ve delivered a speech at a PanCare-meeting regarding depression after child cancer treatment. I explained to her that SALUB (Swedish) have had guidelines in place that meant I should have been provided with care, but they weren’t enforced. I told her that I have a project where one of Sweden’s leading expert in child oncology and late side effects plays a role (more on that at a later date). I also informed her that I’ve also asked him for help…

Earlier on during this appointment, I asked her what she knows about survivors. She didn’t know much. She saw no reason to either; it wasn’t relevant to her.

However, later on, she did eventually soften up a little bit. She started to listen, I told her some names she could reach out to, to learn more.

Few changes

Sadly though, in terms of treatment, nothing substantial has changed. There are two things happening. First, despite me having had a deteriorated mental health for a while, I’m now reducing the dose of the medication I need to remove before I get treated for PTSD. Or whatever diagnosis they make up. I’ve asked to get some help to be in a situation where I felt more comfortable doing this for a long time. But it’s not happening. I could have quit with this medication more easily a year ago with my GP. I’ve gotten worse as time has passed. I also get less support from the psychiatric unit now, as I mentioned above. I do have a psychiatrist now, but I do question her value at this point.

She wanted to refer me to the addiction clinic initially. I’m on alprazolam, extended release, and it’s an addictive sedative; it’s just a fact. Here’s the thing though… They require you to submit to random drug screening through urine samples. I’ve said this before, but I’d rather die than to submit to this. I’m a cancer survivor, not a drug addict. I don’t care about the arguments here; I’m on a medication prescribed by a doctor, I’ve never taken illicit drugs. This is simply wrong. Maybe this seems suspicious to some, like I am taking other drugs. And in a weird way, I’d like to leave a urine sample just to prove that I’m not. To show that yeah, this is about principles. But that defeats the purpose…

Why I criticise

When I criticise systemic failures, people often respond that, “Yeah, but that’s how it is, better get used to it.” Herein lies the difference between a patient advocate and a patient. I’m not criticising for criticising’s sake – I want things to change, and I’m willing to do whatever I can for this to happen.

Whether or not this will change, I don’t know, but what I do know is that I will not be treated like a criminal, a drug abuser. I see no reason why they shouldn’t take my word in this scenario, when they do so at other clinics in different scenarios.

Accepting how it is – for now…

That being said, I’ve come to a realisation. Swedish healthcare no longer provides all the help that psychiatric patients’ needs. (Maybe they never did actually, I’m not sure.) I went to the Maxa Livet-conference, 2018, organised by the Swedish Childhood Cancer Foundation and I spoke with a survivor there, who is also a therapist (or something, I can’t remember the exact title). She’s a private practitioner, because the healthcare system simply won’t provide simple, “talk”-therapy. They use what they call evidence-based treatment. I’ve written about this before, and I do urge you to read it. You’ll get an idea how (in)effective it has been, at least for me. Evidence-based treatment is paramount, I agree. However, having someone to simply talk to is paramount as well, especially when the evidence-based treatments can’t be applied at all…

Anyway, she informed me that there’s an audit being conducted currently, where they (I can’t remember who “they” are) are checking why so many patients elect to go to private therapists to talk. Paying 50€ for 30 minutes? 100? More? I don’t know the cost, but I know it’s very, very expensive. Either way, she said that they’re no longer providing this form of treatment with funds from the government, at all. As far as I know without exception. If you want to talk, you’ll get a nurse, every other week. Not more than that though. Read on to find out why!

This is what we’ve been reduced to. They mess things up, you pay for it – in every conceivable way.

I’ve come to the conclusion that I will not get sufficient help from the state’s psychiatric unit. They might take me half-way, maybe.

It infuriates me knowing that Sweden’s healthcare system can mess so many things up, but when it comes time to clean it up, it’s always Someone Else that should do the cleaning.

Is it an improvement?

Yes, it’s good that I got to meet this psychiatrist, it’s good I have a nurse again. It’s good that we’ll slowly phase out the medication. Then I will get help with the PTSD. Or whatever. But I’ve screaming at the top of my lungs to get help for a year. Forgive me if I’m not overly impressed with this situation. I could just as well have quit with this medication ages ago if I knew I’d be stonewalled like this.

To make matters worse though, this nurse is fully booked. She explained to me the first time we met that she needs to prioritise patients. I’ll get to see her once every other week. Except for next time; it’s crazy busy before Christmas and as such, I’ll have to wait three weeks. Forgive my pessimism, but I’m pretty sure it’ll be the same story next time.

Oh, and another interesting factoid: If I’d need to meet her more often than twice a week, like say, once every week, I’d have to be admitted to the hospital. Because then they’d consider me too unstable. Yeah, need someone to talk to once a week = hospitalisation.

I have complained about how I’ve been treated to the nurse and psychiatrist several times. They get annoyed – they feel I should drop it. And yes, I should, and I will. But it’s not going to happen overnight. Especially since it’s not getting all that much better.

Either way, the nurse at the psychiatric unit asked me, “What can we do to help you now? We can’t change the past; what can we do now?” I told her, “I’d like to get support from you and meet once every other week.” She responded that, “Yes, and you’ll get support, we will meet.”

Which is a lie. I’d say this is the bare minimum of help I should expect. Yet, sometimes, I’ll have to wait three weeks. I’m going through hell; I don’t have just a depression and quitting with this medication could take well over a year. It’s not as if the pills I’m on are miracle drugs; I already feel like crap. I have no appetite, some days I don’t eat a single major meal of food. I’m starting to have severe issues with my diabetes, meaning my fatigue gets worse.

I’m still struggling, fighting to stay alive. My suicidal thoughts have gotten worse. I told the nurse this. She asked me how likely it is that I’ll take my own life in the near future. I said that it won’t happen.

So, I’ll see her in three weeks.

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