Hurler syndrome treatment in 30 Oncology clinics in Germany

We also experienced the worst possible care. We were there the same night, September 11, 2023, when Marcia Lorena recently posted about the inhumane treatment toward her 87 year old grandmother, who the ER refused to treat. We are witnesses to this horrible treatment/nontreatment. We also were ignored for 3 and a 1/2 hours. We believe we were ignored because we are Americans. Several wonderful German women helped us by asking in German when my husband would be seen. They helped us four times. They were appalled that no one would see us. The desk person kept telling us that we had to wait and that they did not speak English. However, they told us a female doctor spoke English and would see us soon, but never did. It was 10pm at night and no one was in the Emergency Room and they still ignored us. During the 3 and 1/2 hours, we saw lesser cases come in and get assistance, while we continued to wait. We eventually left. I can tell you this would never happen in the United States of America. In the United States, they take you and care for you, no matter what country you are from. I wish these ER hospital personnel could experience the helplessness that we felt when they ignored us, when they are sick and outside of Germany, but unfortunately, if they are traveling in the United States, they will be well taken care of. Shame on them! Also, the Hospital Northwest should receive ZERO stars, but I had to give one, to do the post.

I was in for a sleeve gastrectomy and I could not have wished for better care in the week I was there. Absolutely amazing staff!

Management needs to be improved. A lady called me to cancel my OP the day before and said I have to wait 2 months even though I did all the pre-OP exams and of course arranged my work for sick leave before 1 week of hospital stay. When I asked if I can have the surgery with the same doctor who examined me, she started to yell, HE'S NOT MY CHEF ANYMORE in German and hung up before I responded. So I had to find another hospital to have OP. I don't understand how they can throw out a patient when their own doctor strongly suggests a surgery urgently. Also, why do they have to get ANGRY at patients just by asking questions who's already suffering and feeling already miserable?

If you call them and are lucky enough that your call gets picked up, and you ask the receptionist (in german) if she speaks english, she would in a very harsh tone say "NO" and slam the phone. I think she shouldn't be working in any field where communicating with humans is required let alone humans in distress at a place like a hospital/clinic. Pathetic!

Everyone waits in ER and i was happy to do so. The attending ER doctor was amazing anf really listened despite the chaos. I was admitted to Station 5A and the nurses were lovely. The rest fo teh doctors need to grow empathy and a heart. The hygiene of the Station was filthy and blood from my Roommate was not cleaned up for several days. The Orthodox Jewish female doctor gave me a heavy antidepressant that was touted a "to help me sleep", was totally uninterested and with an air of contempt and later that evening as were the rest of the doctors there, the male nurse tried to steal my phone charging cable thinking i was unconscious from the medicine, that thankfully i vomited. To the red headed trainee nurse, thankyou for looking after me and believing me, your hunch was correct. I have since been diagnosed from a real hospital with Post Vak (Uniklinik Marburg) who laughed at the arrogance and poor attitude in the Asklepios Artztbrief. Everything that was "unaufällig" turned out to be pleural effusions, neurological damage and a blood clot that SHOULD of been discovered easily by Asklepios. SHAME ON YOU.

I was extremely sick with high fever and attendees at the help desk was so rude and even deny to let the doctor see me. Pathetic people with no humanity!!!

Unfortunately, the attitudes of almost all the staff during a recent outpatient trip to emergency were extremely regrettable. I was initially refused any painkiller for hours, despite having a broken bone. I was made to wait 7 hours, more than all the other people who had come in, not all of whom were acute cases. And I was not given a medical report on leaving, which meant I had to make a separate trip back to the hospital to insist on receiving it. I attempted to politely follow this up through normal channels but the response was excessively defensive and factually incorrect. No apology, no points acknowledged. Very disappointing indeed. All I can say is that 80-90% of the staff there were unpleasant, seemed to hate their jobs and made a difficult situation for me and others like me far worse.

Supportive, very friendly staff and fast help. Large site/area needs time to orientate and find your way. Treatment was top and newest available.

Non-professionals, there is no good communication with the patient! If you have a serious problem, it s better to look for another hospital! It takes a very long time for them to respond, and when they do, they are never clear. It seems like they want to get rid of you or respond in a way that makes you give up and look for other doctors or hospitals. Be clearer that you are medical professionals! For station mund und kiefer.

Came with toothpain on sunday,didnt wait too long cca 2 hours, doctor and nurse were very kind,spoke English,helped me with pain,so im happy i came there,just parking is pretty expensive.

The emergency department is just a disaster. Organisational chaos. As a result- hours in a waiting line.

I really hope Google will someday let me give negative score to this place. I had to wait 2 months for an appointment, only to come here and sit in the waiting room for 1.5 hours (and the appointment is for a 2 minute consultation). The level of inefficiency and incompetence is just astonishing

I have been to this hospital twice, and both times I got disappointed. First time I needed a paper from the doctor that I was sick. She wrote incorrect information on the paper, and I only noticed it when I was home. My documents were not accepted by my uni as a result. Then, today I went to the Blutbank to donate my blood. I have a rare blood type, and I already had experience donating. I am also completely healthy and have enough muscle mass to donate without any conscequences for my own health. First, when they took a small sample of my blood from the ear, they put a plaster straight onto my hair. It was very hard to get it out of my hair later, and, mind you, very hurtful. Then, I had a talk with a very incompetent doctor/nurse. I speak english better than german, and at one point I asked her if she spoke any english. By the way, I do speak german, I just understand english better. So, I was told: "We speak german here, if you cant speak our language then there will be no donation." Excuse me?? I didn't know that the people I wanted to donate to have such a LUXURY to only have blood from people speaking fluent german. You would refuse half a liter of healthy blood on such a basis? So, in the end I did not donate, I got told to "come tomorrow". Honestly I don't think I will come here ever again. In less than 30 minutes all my will to help people got destroyed. I will make sure to avoid this hospital at all costs, and you should too.

Very long waiting times and you get send from one place to another. Some of the places have no real waiting areas. Once I did get seen the nurse was very friendly and helpul though.

Most racist doorkeeper ever :(

I was transferred back to the emergency department where I waited for hours in excruciating pain to be seen by J. Straub and Dr. med T. Mederer for less than 5 minutes each completely ignoring my recent scans and the notes from the referring hospital. One of these supposed medical professionals told me they have a program that could help me but that I couldn’t be treated any further because I only spoke English. They administered Iv pain medicine that made me feel worse and pushed me into the waiting area until my family could pick me up. I am requesting a formal response from the hospital administration and the head of Neurochirurgie Prof. Dr. N. O. Schmidt. I will also file a complaint against the hospital through Tricare.

US military here. I would definitely not recommend this hospital. Poor communication, rude staff (case management). Make sure they can 100% confirm your appointment on the first day of your visit (at least on your pre-op appointment)! Make sure your surgery is not "selective", otherwise they would schedule you and let you know 24 hours prior that your surgery was rescheduled for in another 6 weeks (almost like on aspace-available basis). This happened to me. If you are an active duty military member feel free to reach out to me. Unless you wanna be your commander's favorite and put in and cancel your convalescent leave as if you're a civilian... Also talk to your local Tricare office about this hospital.

I was extremely honoured to have been at Regensburg University Hospital. They outmost trained professional students and their highly educated doctors. Their program is unmatched and superb. Simply the best!

Two weeks ago I got a fixed appointment to see a specialist. When I showed up on time for the appointment, we were told that no doctor would be there today and the appointment would not take place! I was kept there for 4 hours with unsuitable staff and in the end I was just given a piece of paper with a different phone number so that I can try to arrange a next appointment. I was present with my mother in a wheelchair, who is chronically ill and in severe pain. The emergency room didn't help us either! Thank you, I hope you stay healthy!!

I had vomited 4 times, was in sever pain and fever. I went to the emergency for some assistance at 6am in the morning, the doctor and the receptionist refused to take me in and instead said you won’t die if you dont eat for another 2 days. Extremely rude and racist behavior. Never EVER anybody with a person of color should go there. Don’t deserve even 1 star.

Extremely rude attitude even at the reception. Then we visited the eye clinic and there the "head" of the department was arrogant, rude, mean and disturbingly angry. I would not recommend EVER! We were waiting for an examination of a child, but it never happened.

Extremely inflexible and unhelpful.

👌🏽👌🏽👌🏽

If I could give a no star I would. The worst experience me and my family had in this hospital. My dad was put into the ICU-intensive care unit. U would think each patient is in good hands Once handed over to any hospital but I wouldn’t say in this case. We waited for hours and hours until someone finally came back to tell us even what was going on..it was a mess and a poor communication even for a German citizenship like me. Unclear what he even had after so many hours waiting in the waiting area. Once my dad was “stabilized” we were able to enter. 2 nurses were attending him laughing and joking about some ridiculous joke they were talking to each other. (Keep in mind my dad was on the machine with pipes unconscious) and we as a family stood there in shock! A doctor in charge came along fiddling with the oxygen machine since it kept making noises. He just casually went oh get another cable from the Keller or any fake Chinese one will do. Well it hadn’t to do with any cables in the end. IT WAS BECAUSE IT WASN'T EVEN CONNECTED TO ANYTHING!! Starting with this and throughout the night readers can guess how it ended up with my dad! To the lady nurse who was a visitor that day from the neighboring hospital we thank you for giving us the time you gave us explaining us that dad had good chances of survival and giving us hope that our dad will come home again.

I want to give Zero star. There is not a single thing good in this hospital. I broke my foot (multiple hairline fractures) on 17 July. I went to the emergency department (Notfall) and waited almost 6-7 hours (there were hardly 5-6 patients). The doctor did only the XRAY and said no bone is broken. Please take Ibuprofen and sent me back home with an appointment to see me again after 5 days. On Monday i went again, the pain was unbearable. I told the doctor and they did CT scan (waiting time was again 4-5 hours). She told me later that my bones are broken and they put Gips on my foot. After every two weeks, i came for a basic check-up with an appointment but still had to wait 4-6 hours. Today, 04 Sept, i had an appointment at 11:00. I came on-time and still waiting (it’s been more than 4Hrs+). Is this how a developed country’s hospital should be? Why they are unable to manage a small amount of patients? There are hardly 20 patients. I’m really irritated, disappointed and angry on the public health care system of Germany. Better to get treated from a developing nation, where doctors are more competent and you get better service and treatment.

The worker here are so lovely and caring…despite I don’t understand German but I was loved

I made an appointment on Friday at 11:15 . I come to the appointment and they say they don't have it. They send me to the emergency room instead, where i wait for 3 hours. You sit there, without any clarity, afraid to going to the toilet so not to miss your precious turn, getting hungry and anxious, watching all your day plans crashing apart. Story #2: I've made an appointment, at "Notaufnahme", the doc told me "make it early", so I scheduled for 8:30. I spend 130eur on taxi to reach the Klinik from Clausthal (the only way to reach at this time). They have a complete haos (bad weather, understandable). Aftet 6h of waiting, it turned out that THEY LOST MY FILE. (and I asked about my file at the 6h of waiting and received then a rude "you have to wait", instead of them checking if my file was present). In total, my waiting time: 8;30-20:30, that is 12 (TWELVE) hours. From the nurses/admin I received no apologies nor kind words nor anything of this kind. The doctor was the only person who got into situation, and applied good "comm skills", kudos to him. So it happened twice: first, they lost my appointment and told me they didn't have it. (story #1). Second, they lost my documents (story #2). Story#3: that is a normal interaction: had an apntmt at Notaufnahme at 8:45, waited 1h, got invited, then doc said "surgeon is busy wait for more 30min, go have a tee if you want", came back after 30min, got "serviced". Thanks to the doc for clarity ("go have tee for 30min"). That is a positive interaction: only 1h30min waiting in total, everything was clear. Added one ⭐ (now one, prev 0zero). On the negative side: turned out my Monday visit with 12h waiting was absolutely useless. Story#4: so they gave me a receipt for physiotherapy, but put the WRONG name on it. I ve an appointments with the physio, waited for three weeks, attended 3 sessions, and the physio now cancelled all the other appointments bcs of the wrong name on that receipt that they gave me. Now I need to get another physio prescription from UniKlinik, then wait another three weeks (?) for new appointments with physio. And all this while doctors are urging me "you really need therapy, or you have big troubles with your joint". Lesson: always check the documents they give you, they make mistakes.

I spent 6 days in the urology ward. Both the doctors and all the nursing staff were always very friendly, helpful and made a competent impression. They took their time with the patients and always had an open ear. I have nothing negative to report. 👍

Absolutely .... No problem, nobody likes going to the hospital, but the people here are very friendly and helpful. It doesn't matter whether you're registering or on the ward. Medical ? I can't allow myself any judgement. I, for me (blood cancer) am very very satisfied. I feel looked after and cared for by professionals all around me. The nursing staff also has a professional knowledge that inspires. A very big thank you to the Department of Internal Affairs ab and cd. And to the kitchen ;-) I thought the food was ok. PS: very tasty roast beef. Thanks to

Worst experience.. I waited almost an hour. They simply sent me back because it’s not emergency. As a doctor., their minimum responsibilities to treat the patient. I have been suffering from itching from past 2months. Same thing I told them as I’m not getting Termin with Dermatologist. She simply said we can’t treat you. What kind of hospital is this , the god knows.