German medical system and complicated diagnoses

Hi everyone--

I've only posted a couple of things here before, but we're going through a huge ordeal here in Salzburg and I thought I'd see if anyone else had experience with the medical system.

Our son was born two months ago with some serious medical problems. He's currently in hospital in Salzburg. We have been waiting for two months to find out what's wrong with him. I know he's a complicated patient and that he can't be diagnosed through this site, but i have some issues with his care.

Lab tests always take a lot longer than originally thought. A muscle biopsy was ordered and performed, and expected to take a week. It took three weeks. We were once promised the results and the secretary who promised it just went home early instead.

Lab tests are performed and no one gives us the results. I have to ask on a daily basis about everything or no one tells me. And even then I often get a shortened version of the answer. It takes a lot of questioning and home research to find the right questions to ask in order to get a fuller answer.

I've never been through anything like this before, so I'm unclear on how this would work in the US. My family is starting to act like it's where i live and not my son's problem that's causing this.

Any ideas?

I would speak directly with the doctor in charge of your baby first about your concerns. If you feel he's not taking you seriously, press the issue with the hospital administration. Failing that, does Austria have a medical health board or some governing body? Don't overlook the power of the local press, either. Talking to a reporter is always a double-edged sword, but if you want public sympathy and immediate action, let the whole damn world know your kid's life is in danger through official neglect / incompetence.

Since when is not giving full test results to the parents neglect or incompetence?


The medical culture is different compared to the English-speaking world. They don't expect patients to take such an active role in deciding on treatment. They probably don't see the need to give you full results because you are not a doctor. It can be frustrating but that's the way it is.

There goes our chance to play Dr House.
Talk to the doc in charge of your child's case ASAP and good luck.

Siggie, sorry about what you're going through. I can't really offer anything regarding the system over here since I haven't been through anything near what you are at the moment. I haven't been very impressed so far here in Germany with medical treatment (had a doctor give me Ibuprofen for severe strep, thankfully I had some penicillin in my medicine cabinet to self-medicate).

All I can tell you is my brother was born with some serious issues because he was born over 2 months pre-mature. I'm from Chicago suburbs so my brother was transferred to Loyola Medical Center in Chicago for 3 or 4 months until he was able to come home. During that time the doctors were calling my parents at all hours to give them updates or just to reassure them things were going okay. My parents still talk about this from time to time; just how attentive the staff was and how they could have never made it through the whole thing without all that communication/education.

Maybe my parents got lucky, not trying to say its the norm. I sure hope what you are experiencing isn't the norm and that something could be done to make it better. They have to understand you are a worried parent that needs to know everything in order to have some peace and hope.

Hope it all works out for you.

Why is this thread entitled "German medical system" when it's about a hospital in Salzburg, which is in Austria?

How do you know it was strep? And what qualifies it as severe? How do you know how much antibiotics to take, which kind is appropriate and for how long to take them?

Hi Siggie, I am sorry to hear about your troubles and hope that your son's health and the situation will improve.
I would find an outside pediatrician and release any doctors or labs treating your son from their confidentiality, telling them in writing certified with receipt that any results are to be passed on to the ped immediately with copy to you. And keep badgering them, this is information that you are entitled to. Don't let them treat you like a pesky fly, you are the kid's parents and it's his life that's important, not the lab secretary's early leaving day. Up the level, talk to the head of department when possible.

Because I am smart enough to know because I seem to get it quite often (for one). And secondly I went to a different doctor (worked for a EU Organization that had an in-house medical facility) and she couldn't believe that the German doctor gave me ibuprofen (I brought the medication in what he gave me). She said it was one of the worst cases of strep she'd seen in awhile and sent me home for the week. And I know it was bad because I spent the weekend wishing for death because I was in such agony and my fever was so persistant. Proof enough for you?!

And about German vs Austria, I can read... and I do believe I wrote that I don't have experience for his situation. I just gave an example of my experience HERE. Are the countries so different medically, as if I made a comparison of treatment between Nigeria and Switzerland?

Now you are changing your story!

Siggie, first, I'm sorry that you have to go through all this. It must be extremely frustrating to not get answers when you really need answers.

My mother always said 'the squeaky wheel gets the grease' so do what Sarabyrd said and keep pestering them for answers. Nothing will change unless someone demands it. But, whatever you do, make sure you do it in a calm, rational way so they take you seriously.
Good luck and keep us posted.

Well it sounds to me as if Germany and Austria are pretty similar in that the doctors have no bedside manners and do not feel it necessary to explain anything. And saying nothing, of course, makes it that much easier to be unjustifiably negligent.

Why am I changing my story? I went to the 1st doctor on Thursday because I came down with a fever on Wednesday evening. He took 2 minutes to listen to me, looked at my throat, wrote something on a paper (prescription) and wished me a nice day. Come Friday night I was in such agony I couldn't begin to tell you. My fever was 103 (sorry, I had an American thermometer) and I couldn't even swallow my own spit. Saturday and Sunday I took the penicillin I found in a box of my things from home. Monday morning I hurried to my company's doctor who wrote me a new prescription and wrote me out of work for the week.

Is that better for you? Is it so important? I think you people should be more concerned with helping the OP than worrying about my stupid example of an experience with wonderful German medical care.

What did the doctor precribe you on Thursday and did you take it?

Regarding the OP, I wish you and your son well.
There is an ombudman system in Austria. I know someone with medical / Salzburg connections and if you have no luck finding the right people to push with,
send me a PM and I could ask him if he knows where to go.

I've always been well informed when going for my ops in Germany, but I think in your situation as that is not the case, you should go and speak to the Director of the hospital, if Austria is like Germany than he/she should be quite accessible (in my case, he performed my op himself) or at least the Oberarzt or Chefarzt if it's a much bigger hospital. If you speak to a nurse and ask her to get the Oberarzt or Chefarzt for you so you can speak to them re your sons condition, they should always get him for you (at anytime).

I hope your son improves and is home with you soon.

Hi Siggie,
I'm sorry to hear about the troubles you're having. My daughter was in hospital for quite a while, and I found it really frustrating, especially as I had another small child at home needing a mother! We were mostly on the cardio ward, and most of the staff were really friendly and helpful, especially once they realised WHY I was so distressed. I found it best to go to the ward doctor's office at appointed times, rather than trying to get information inbetween, and they were much more open with information after I'd explained I NEEDED to know exactly what was happening with my child (and this on a daily basis).
Outside of the hospital, our KINDERARZT gave me his home number and told me to call whenever I needed. This seems to be quite a common practice here for difficult and/or distressing cases.
One more important thing: in Hamburg we've got a wonderful organisation called DIE HÄUSLICHE KINDERKRANKENPFLEGE, which is a group of highly-qualified nurses who come to your home as often as necessary. This means your child can be at home (and only someone who's already been through this knows just how important that is), receiving proper medical supervision, with a doctor called in whenever necessary. Would you like to me find out if there's a similar organisation down your way?
Apart from that, all I can advise you is taking deep, long breaths, and stroking your child as tenderly as possible.
Thinking of you,
debby

P.S. They often have psychologists trawling the wards, especially when there are children involved. Grab the next one who comes round and get him to listen; medic to medic often achieves a lot more than when the parents try on their own.
Good luck!

what a helpful and sympathetic post, debby. it's nice to see someone genuinely offering to help someone else (and a stranger, at that).

for the original poster, my heart goes out to you and your baby, and i hope things turn out alright! keep bugging those docs!

I've really got to say that my experience of Austrian hospitals, in particular 2 in Salzburg and surrounds were overwhelming positive...and definitely superior to anywhere else I've been (UK, Australia, Spain, Germany.) Maybe you are letting your worry for your child cloud your judgement? Perfectly understandable...but be happy for what you've got...

Thanks everyone for the kind and encouraging words. This is the hardest thing I've ever had to do--trying to be a first-time parent in the middle of a very difficult situation, manage the language and manage my son's healthcare. After reading some posts this morning I went and had a long talk with one of the nurses. She was very sympathetic and very helpful, and as it turns out our doctor (who is the Oberarzt for the clinic) is just as frustrated as we are. It has a lot to do with the communication style here in Austria, but now that I've read a few posts as to how to go about getting the information i need--i'll try harder because they need to understand me just as much as i need to understand them.

And i think you're right about my clouded judgement Pirulero. I will try and be more patient. I just can't believe lab tests can take so long! We are told a potential date for a result, and then it always gets changed. Not the hospital's fault, i suppose. These are not things that can be done in house.

and it can't be so different from Germany here--not for what i was asking. Sure, if we're talking about the system, or the insurance or that sort of thing.

I should count my blessings that I'm not fighting my way through an HMO system in the US.

I'm also pleased to hear so many people come to Salzburg for treatment. I will take a deep breath and give it some more time. Thanks again for the kind posts.

Hi again Siggie,
I'm glad to hear you've been able to have a helpful & sympathetic talk at last.
My daughter's nurses have just supplied me with a list of people who might be of help to you. I don't know how to organise links (computer virgin!), so I'll just write it all down for you.
In Salzburg: www.hilfswerk.at Frau Buchmeier, Tel. 0662-434702-36
In Traunstein: provita.boehme@t-online.e Frau Shawky-Böhme, Tel. 0861-209180
In Munich (but they cover a huge area): goetzgmbh@gmx.de Frau Götz, Tel. ++49-89-35789827

My experience with the team in Hamburg (mentioned in my last posting) was that they came into the hospital and spoke with all the necessary doctors AND nurses before accompanying us home. They come once a day, or several times, whatever's needed - and you call an emergency number if the child pulls a tube out or whatever & someone comes ASAP - meaning you only need go to the hospital for tests and/or consultations with the doctors. I found it an enormous relief being home again!
It might be far too early for your baby to be able to leave the hospital yet, but knowing about these services is not a bad thing.
I have "normal" german health insurance cover, and didn't incur any extra costs for this. The nurses were great, and now, 9 years on, still take a great interest in my daughter, although we only see them 2 or 3 times a year (thank god!)

If you want a virtual shoulder to cry on at all, feel free to send me a PM any time. Sometimes it really helps to be able to rant to a stranger!

Why dont you go to a different hospital?When a doc is bad i just try a next one.If they seem not to work properly then go to a better one.time is precious when a kid is ill.So dont waste it waiting.Good luck