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You are the bees knees! Thanks for your support and dedication! Mx

well hello!

1. staff should not make you feel guilty for trying again if you already have children. my second fresh ivf doctor said to me, almost like he was covering his tiny toned bottom, "if this doesn't work, you can't really complain. you already have children and so many infertile women don't." i was perfectly aware of that fact, and didn't need him making me feel selfish for trying again.

2. staff should ensure records are accurate. my former clinic in toronto once called my father in law's house to inform him that my transfer time had been changed....however that was not where i was staying for this FET. they had assumed my former address was my current address.

3. if a patient is crying after receiving news like, "no embryos survived the thaw" (always a fun one), or "your beta was less than four, you can come off the progesterone immediately...you're not pregnant" the staff can insert a sympathetic phrase. a heartfelt, "i am so sorry" from someone who sounds like they really are, is a compassionate phrase to hear when your dream has just been crushed for another month.

4. i know one clinic that basically assigns staff members to patients. this allows a rapport and familiarity to build, so the file and patient isn't a complete stranger when they walk into the clinic for a repeat treatment. the patients liked knowing that they were known and that they had a name to ask for.

5. if you are in a very early stage of pregnancy and hospitalised with ohss, a nurse should not say, "you know, the morning after pill would take care of this."

we were lucky, we were basically always treated wtih respect and care. good for you for taking on this topic, i hope the staff can see that you are not attacking them, rather helping them help others.

xo
ps - did you get my email re: nina??

A negative experience I had: When my clinic botched our IVF cycle by missing ovulation, the doc blew me off with a "your insurance covers at least another cycle, so it's not a big deal."
I don't know that I've ever had a medical professional so thoroughly miss the point on something. Even if you have coverage, it means one more bite at the apple and not the two that were covered. And it's still a failed cycle, still a huge loss, still a huge amount of effort and pain and injections to go through again.
As one of the haves (as in having insurance when we were in the States), we still didn't go back. For us, there was little point in putting our hopes and dreams in someone who was unable to appreciate them.
In Israel, it's completely different. First off, it's covered by insurance. And second, the amount of caring and effort and attention put into it is a model for other nations to follow. I don't know that it's cause and effect, but the success rates here are much higher too.

I remember there was a thread on this topic on IVFConnections.net but I can't find it. Bummer.

My 2 cents: If the husband wants to be at every wanding, every whatever, let him.

If the husband doesn't like the 'collection room', have some other options to discuss.

Clever sister I have, brilliant gene pool clearly part of the family.
I do think bedside manner is everything and while I have never had the infertility heartache, I do deal with bedside manner at the hospital all the time. I have seen how different medical staff behave in the government hospital and how despite limited resources, some are so much better than others. What saddens me is meeting the students and seeing how lovely they are with the women just knowing most will not be the same in 10 years time.
For a state hospital...
Eye contact
Calling the patient by name
Caring physical touch
Voice
Not treating them like stupid children
Information.... they are seldom told what is happening which increases anxiety
Empathy
RESPECT
Well done arsehole, I am proud to be your sis.

The single thing that made me the most uncomfortable, throughout my pregnancy, birth, and recovery, was when no one in the hospital ever asked me or bothered to learn what my son's name was, including my doctors, his doctors, the postpartum nurses, the NICU nurses, the lactation consultants. He was always referred to as "your baby." They called ME by MY name, and he was a patient too, maybe they could at least find out if he HAD a name.

Other than that, I think that doctors and nurses might give a little thought to the old golden rule of treating their patient with the same respect that they'd like to get. A little human warmth, not assuming that we're ignorant, obstinate children. If an infant is in the NICU, try to be at least a little kind to a parent who's spending their time there with him; it's a tough place to be and being treated as though your child is the reason they can't get any work done is terrible. When you have to deliver bad news, do it with some empathy--don't just throw it out there and then turn around and walk out of the room. Give your patient a minute to absorb whatever you've just said to them.

There's just so many. I keep thinking that in my history as a patient with a chronic illness, and, more recently, with an official diagnosis of secondary infertility, I've met every unpleasant, egotistical, condescending, uncaring, indifferent, cruel and self-absorbed medical professional on this earth, and then I run across one more OB who says something like "Don't worry about having another one. You've got one already."

To me, communication is key. It's so frustrating when you can never call to speak to a doctor or nurse directly but have to leave a voicemail message, and then they don't call back the same day. If you're stressing over something that's going wrong in your view, and of course the whole world tells you that to be successful you need to relax, it doesn't help that your stress level ratchets up with every hour of waiting and every increasingly tearful and frantic message. And then when the nurse does call back, they should try not to sound like they think the patient is an idiot, or to sound bored.

One other little thing - telling me that cancelled or failed cycles at other clinics "don't really count" because they weren't at that doctor's own much better clinic. Oh yes, they do count, especially when they cost me so much money and emotional effort, not to mention time were invested in them.

And it really does make you feel so much better just to hear an "I'm sorry" or a "hang in there", or get a nice cheery greeting from someone who remembers your name. Or even "you know, I've seen this work when everything was looking bad" to give someone a little bit of hope if things are looking bleak. It's the small things like that that can make a world of difference.

Please make sure to bring up my star experience with my previous gynae that didn't even bother to phone or email back after I left five messages over a space of a week when I needed some basic questions answered (e.g. when do I drink the Clomid, when is my husband suppose to be in town to do his handjob etc.), now this all happened in the month before my scheduled AI. I eventually spent some time talking to the front desk lady, who knew a few answers from previous AI's. Then her highness made me feel like I'm wasting her time when she finally phoned me four days before the AI was suppose to happen, all irritated, and then even humiliating me more when I shared with her that my husband is now no longer in town on the right day, as he had to get his flights booked the day before. I'm sure she had no idea how incredibly insensitive she was being and how she really wasted our time and emotions. But, hey, what does she care, she's a hotshot gynae with a full waiting room. Very frustrating and humiliating. I'll never go back to her.

My advice would be for everyone who works there to think about what it would be like if it were happening to them. My worst experience so far was when I was nine weeks pregnant and started bleeding. I called my doctor's office and the nurse told me "oh, well, you are going to miscarry, if you haven't finished miscarrying by the time you have your next scheduled appointment, come in and we will take a look." I did not need to have a miscarriage diagnosed over the phone by someone who had never met me. She sounded like she didn't care at all. And she told me not to come get checked out if I had finished miscarrying. My doctor ended up seeing me over and over again to make sure everything was okay. I don't know what would have happened if I had taken her advice. Luckily I wasn't that dumb.

The same nurse later faxed a copy of my lab results to my office without a cover sheet on them. The nosy guy who works there found them and read them and wanted to know what kind of tests I had been having.

How about listening to the patients needs and wants, and caring more about them than the success rate of their clinic.

When I went to change clinic after 4 failed cycles, I went to a local RE who I've heard great things about. At the end of our meeting he pretty much said that he agrees with the treatment that I've had so far but that he doesn't see the reason for continuing with my own eggs. If I should decide to do donor eggs then give him a call. When I asked "So are you saying you recommend that I move on to DE, or are you saying you won't help me unless I'm doing DE?" He just repeated that he didn't see the point, and to call him if I wanted to do a DE cycle. Now, if I'm willing to put myself through another cycle, and if I'm willing to pay for another cycle, why not help me? Jerk! (No wonder that clinic has good stats - they don't take long-shot patients.) It would have been nice if he listened to what I wanted and agreed to do another cycle, but then broke it to me gently that I may want to consider DE if this one doesn't work out. I bet if that was his response I probably would have gone to that clinic and cycled with him instead of tossing his business card on the floor and walking out on him.

Such a great topic!

My RE and his entire staff are amazing, wonderful, intellegent people. My advice to an RE is to make sure that his ENTIRE staff is all of these things, not just the RE. It's about the whole experience, not just "open legs, insert speculum". The experience starts when you walk in the door.

I have a story I'd like to share...

I was coming in for an ultrasound after I knew I had already miscarried. My doctor was really busy so my husband and I were sitting in the exam room for a very long time. We heard a knock on the door and it was the receptionist. She said she heard I had a miscarriage that that she was so sorry. She sat in the exam room and waited with us until the doctor was able to se us. I will always remember her kindness.


Sometimes I think it would be nice if they had a separate waiting room for those that have just had bad news. There is nothing worse than getting bad news and having to wait in a room full of pregnant women for the nurse to finish with all your paperwork.

Oh, and it would be great if you weren't told that it's ok because you are still so young every time you have a miscarriage.........sometimes being young is just not enough, especially when your ovaries are on the point of giving up!

My RE leaves messages for me using her NAME, not "Doctor BlahBlahBlah." This is so nice - why doctors feel they have to have that titular Wall of Respect between us is beyond me. Helps that she is a woman.

I actually had the audacity (gasp!) to point out some of my doctor's insensitivities, and I was treated very badly from that point on.

Now, this was very hard for me. For one, I was already in such an emotionally and physically vulnerable state, this was just too much to bear. And two, since I'm usually one not complain and be a good girl, actually getting punished for speaking up for myself set me back in the self-esteen department by decades. It was very damaging for me emotionally.

As others have said, communication: My clinic was very good at letting you know when you could expect test results, which number to call to get them, and providing all the available information at one call. Yes, they sometimes had to get back to me if I had questions, but they did get back to me, and promptly (or let me know why they wouldn't be prompt, and when they would call).

Also, not treating you like an idiot: I may be a miscarrying bundle of woe, but although my glands suck, my brain is fine. So thanks for the diagrams, the summaries of current medical thinking, and the detailed interpretations of my chart.

And finally, empathy, or at least not horror or dismissal at displays of emotion. I am always sort of mortified when I cry in front of someone, so I understand why you might me, too. But do you have to show it? I'm thinking no. And when I had my first consultation with my RE, I said something about the box of tissues on his desk, and he assured me there were more where that came from.

My doc with the best bedside manner is the one who actually told me he was sorry when I miscarried at 17 weeks. He looked genuinely humbled and sad, unlike every other nurse and administrator I dealt with. He was straightforward without being dismissive, and empathetic without making the experience about him. Perfect.

The worst was the doctor who gave me the chromosomal analysis results after my second miscarriage. Not only had she not read my file to know that this was my second, she proceeded to tell me some long story about a woman who had two living children and two miscarriages. Um, so? I think she was trying to say, "It could be worse," but because she hadn't bothered to read my file at all, she didn't know that I had a worse average. Plus, who wants to hear that anyway? Read the damn file.

One of the things I loved about my RE is that his wife had actually undergone IVF. He really had compassion for what we went through. He also had complete faith that (given our situation) we would eventually conceive. His continual upbeat attitude helped a lot. When our daughter was born, he sent a personal letter congratulating us!

Regarding support staff, I had the nurse who called for my failed beta sound genuinely sorry and it definitely helped. The clinic also offered free seminars on mind/body work that helped me deal with the stress of cycling.

Finally, having phlebotomists that know how to draw blood are key. When you are getting stuck with a needle several times a day, you really don't want someone rooting around in your arm trying to find a vein!

I think first and foremost they need to remember that we are human and not simply a file. We are not an obstacle to overcome to help them report high success rates back to the government in which to gain additional grants. The clinic I used in the states batch cycles patients so bascially all ER and ET are done at the same time of the month so all patients cycling in a particular month are roughly on the same cycle. That doesn't mean we are not individuals and some are more needy of support than others. My first 4 cycles I was treated very, very well and had an overall wonderful experience and am blessed with a healthy 4 year old girl. But when we returned for 2 additional cycles it was as if I had never existed in their practice. There was an assumption that I would follow their "standard" protocol however my RE had decided on some different meds to which I had to practically beg the nurse to open my file to confirm. There is a point, unfortunately, at which a patient becomes an armchair professional in terms of their own care and desire for care and the staff needs to be aware the veteran cyclers may have some input to their own care.

My best experience was also after a miscarriage. The attending gynae (who was not my own gynae) seemed genuinely upset and sorry for us. He even walked us to our car and gave my teary husband a hug when we left.
The worst was at the next miscarriage when another attending gynae (again not my own) thought I was exaggerating what was happening (i was haemorraging) and told me that spotting was normal in pregnancy. All this before he bothered to check anything out! Once he had a good look and realised the severity his first words were "oh s*&t. you were right" Not even an ounce of empathy. Just irritation at being wrong. what an asshole.

Good:
Our doctor's office assigned a nurse specifically to us - if we had questions about anything (bills, meds, lab results, etc) we went through her and she got us the answer. We felt like she knew us and we knew her so we were not just a number. Also, very good, when our frozen transfer didn't work she called with the results and was very kind and compassionate, apologized to us and said they really had believed it would work and felt so badly for us that it didn't. She made a point of saying that if I felt that I needed to talk about it that I could call her at anytime and she would be there for me. I never would have called her probably (i'd turn to my family) but I felt very cared for that she would say that.

Bad:
On our 3rd ivf I started bleeding before the 1st HCG test. I went in for the test and told the nurse that. After they took the blood I was getting my things together to leave and the tech RIGHT NEXT TO ME told the next patient "Oh, if you are bleeding it's not a good sign". I got a number that was on the lower end of the scale, but still possible to be viable. The second test (still bleeding) was not doubled, it was something like 70 on the first and 100 on the second. So they wanted me to come in again so they could monitor the number "down to 0 to make sure it is not ectopic". So I went in for the third on a Friday morning at 7am and by 2pm still had not heard the results. By then (of course) I had convinced myself it was ectopic and was freaking out that I couldn't get results so I called the office and the nurse said "We're really busy here, they'll call you when they get in" in a very snotty, rude voice. I started crying and called my husband who then called them back and read the nurse the riot act. She then was apologetic and when my husband explained the situation she said to him, "You have to keep her calm, if her numbers were still rising she could still be pregnant". Maybe if she hadn't been a bitch to me I could have stayed calm. (Turns out my SON is 4 1/2 years old now)

Well, from the comments above - I see that overall I had a very positive experience.

However, I had one small complaint about it that is all about bedside manner. When you are by my "bed" please let me have those four minutes of your time.

Often, I would be waiting in the exam room for a follicle check, for a lining check, for a pg check - whatever and the wand monkey and nurse would appear and chat between themselves about - whatever - how this office policy had to be changed, the weather, what they were planning for the weekend and then - they would turn their attention to me.

It's such a small point - but the time I was there to check for the possibility of a sac and/or heartbeat with encouraging but slow progressing betas and a failure to find anything in the uterus at just over six weeks - I was a wreck - I'd had spotting for the several days before and (as they often due when caused in part by the meds) many of my pg symptoms had dissapated.

To their credit - when RE and nurse finished their chat and turned to me and my husband with a cheery - how're you doing? and I replied "not well - we're afraid its lost - I'm spotting and not puking anymore" they looked chagrined, got quiet and got down to business.

I know its their office and this is the pattern of their day, but it seemed discourteous.

So many good answers here Tertia...I'm just amazed at how many bad staff and Docs there are in the world. Even when I run into most of them!

Okay, so on the good side, getting a Doc who was willing to continue to treat me with my high FSH and not give up. He knew I knew the odds and he knew I wanted to try anyway, and he was willing to try some radical things like DHEA until I finally got pregnant.

On the bad side, his staff who constantly discouraged me and tried to cancel my cycles and make it clear that there was no hope. I complained about them directly to him.

Back to the good side---after he had such good success with me and other older women and high FSHers he started specializing in them, and his staff couldn't take it and insisted that that they didn't want to work with women who were just going to fail---basically they only wanted to have happy endings. So he let them go, and hired a bunch of new staff who were willing to work with the women who weren't going to be the easy cases. (Yes, I am friends with his secretary, who told me everything.)

So the staff you are speaking might want to think about their job security. I want them to be compassionate for moral reasons, but if they can't muster it up for real, make it clear that they should learn to fake it or they just might not have jobs for long. Some REs believe the patients.

i dont usually post comments here, but always read your blog....i am a fellow south african and the province i live in has 2 fertility specialists...the first one i saw had absolutely brilliant bedside manner, his staff where fabulous, even the set up was great...but two ivf's later we decided to try the other doctor and i'm not sure if its because i was used to such great service or this doctor and his staff really lack social skills but they leave me seriously annoyed...that is really a brilliant topic, is it a national thing? or just local?
the difference between the two is the first doctor has had all his staff trained in dealing with infertility...the doctor himself is also very sensitive and thoughtful ....the set up is very comfortable...whereas the other one is sadly lacking in all the above.

haute

http://blogs.24.com/haute

1) Read My Chart. You should especially read it if you can't remember me after three IUIs and four IVFs, even if you are just the ultrasound tech. I do not appreciate being asked if I'm doing IUI after you've already inserted the probe and are wanding my left ovary for IVF #4. It make me worry that I am responding to medication even more poorly than normal.

2) If I ask a technical question give me a technical answer. Do not assume you are smarter than I am. I have a physics degree from a top university, and I dumped the first RE I saw after just one visit because he would not do this. I had to assume the guy was a dim bulb.

Don't try to make the patient feel better by telling them what could be worse, I was told I was probably miscarrying and "when I miscarried I was in Singapore, they didn't even have ultrasound" and blah blah blah I tuned out.

Also if the patient shows that they are informed there is a difference between explaining and being condescending. An uniformed patient may need to know "such and such is an issue", an informed patient should be told that "as you know such and such is an issue, however...." and then be given the real choices rather than the assumed choices.

I never actually consulted a RE myself. But I have found in general that doctors go into baby-related disciplines in part because they want happy endings - even to be the heroes.

I think what most needs to be said is that they really need to take the time to become experts also in how to handle not-happy endings.

My daughter's NICU staff had done this and it was an incredible comfort to us. I think they knew from when she came in that it was unlikely that she would be a "happy ending" but they had SO MUCH expertise in that. The very first night when the nurses discovered that I had never gotten to hold her, three of them coordinated all the tubes and wires to make sure I did.

When it came time to make decisions ALL the staff came in - the nurses, the doctors, the chaplain (after asking us), the social worker. We were all in the room together. We felt there was a team of experts at our side, not that we were being handed off from person to person.

And when she had died the nurses invited us into their own personal rituals - bathing the baby, making molds of her hands and feet, cutting a lock of her hair for us. There was as much care for her as there had been when there was possibly still hope. It was very holistic.

It was clear that they personally were doing the emotional and psychological work of dealing with their grief in a professional, yet open manner. At one point a (male, if it matters) technician reading the results cried, just very silently. It was clear that this was acceptable and although it was heartbreaking to see because duh, guess what the results would be, it was so very human and real.

The staff were taking the time to honour that side of things and experience our daughter as a person. And they really opened the door for us. I cannot say enough good about them. This was Sick Kids in Toronto for anyone wondering, although I hope no one ever needs that.

I would suggest for your organization, once it gets big enough and has enough funds, that you contact the NICU there and see who has been spearheading their understanding of loss and get them to come speak.

I am a postpartum nurse who has also been a patient. I'll tell you what I try hard to get right and what I am trying hard to do better (or what could be better):

Right: I treat patients rooms like THIER homes, not mine. I knock before I come into the room, ask before I turn on a light and try to leave everything the way I found it (bedside table in same position, bathroom door open or closed, etc.). I really try to make my patients feel in control of their care. I try to tell them their options (for example pain control, timing of tests, breastfeeding issues) and let them decide. I also try to tell them what my plan is for my shift (checking them, controlling their pain, assisting with bf, teaching baby care) so they know what to expect from me. Regardless of how busy I am, I refuse to have one foot out the door. I don't turn away from the patient until the question "Can I do anything else to make you more comfortable?" is answered.

Need to improve: talking to the dad. They are the one family member who isn't a patient and I do tend to talk around them. Also, the touching thing. I am not a touchy feely person myself and don't care for people holding my hand without being asked so I don't do that to other people. Need to work on deciphering better who might need that kind of support. I feel in my hospital, convenience overrides respect sometimes. I definetly think our unit needs a seperate section of room for people experiencing loss. There is no way to jusitify putting a mother who lost her baby within earshot of babies crying. When I was pg with my son, I was assigned a woman who had lost her baby. She was exactly as pg as I was. I refused to take her and walk in as a living reminder. Just too cruel.

Customer service in health care is such a difficult balance. I have a collegue that takes 1/2 with every patient for consultation whether the problem is minor or major. The patients love his bedside manner but because he's so regimented the waiting time to get in is very high. The research shows that patients mostly judge us on our empathy, physical surroundings and wait. These tangibles are used because expectations are largely unknown and the technical side of care is not within most patients field of expertise. A good clinic and clinician will work very hard to balance not only bed side manner but access, wait and technical skill. www.waittimes.blogspot.com

How about introducing yourself or at least acknowledging my existence before sticking a foreign object in my vagina? During my IVF I went in on a Saturday for a blood draw and follicle scan. I don't know if the doc on duty that day was pissed off that he was missing the golf course or what but he came in the room, never looked at me, never spoke to me, did the scan, counted off the numbers to the nurse and walked out. It was almost 5 years ago and it still pisses me off when I think about it. A little courtesy goes a long way.

Also take the time to listen, don't assume that you know everything. When the time came to deliver my twin girls I was induced for a vaginal birth. About 30 minutes after they broke my water the pain was getting very intense and I kept telling my nurse that I felt like I needed to push. She kept telling me it was too soon, not to worry, I would be getting my epidural soon, etc. After this went on a few times my husband finally intervened. She kind of huffed a little and said fine, I'll check you. Well, guess what, I was at 10cm and ready to deliver. It got very chaotic after that (the different teams coming in to get the carts ready for my girls' delivery and I kept asking about my epidural and kept getting ignored by my nurse. I understand that she was busy but this was also my first delivery and I was freaking the hell out. A more senior nurse came in, saw my distress and immediately came over to the bed. She held my hand and told me we're sorry, it's too late for the epidural but to relax, the worst was over (dilating) and that nothing would hurt any worse than it already had. Who knows if that's really true or not (luckily it was true for me, I had a super easy delivery) but it helped calm me down. I'll never forget both of those nurses, the first one for assuming that I was just a first time mom who didn't know what I was talking about and refusing to take the time to just check me already instead of ignoring me; and the second for taking that small amount of time to listen to me, allay my fears and help calm me down.

Can't wait to hear how your speech goes!

Great topic.

My RE and his office did so many things right. It wasn't just what they did, but how they did it. They understood when I was upset, sad, whatever. I never felt rushed or as if I was just another appointment on their calendar.

I could ask questions of any of his colleagues, nurses, etc in the office, but there was one that I felt more comfortable with (due to how amazing she was, not anything the others were lacking) and never was I told that I couldn't talk with her. They always offered to get me to someone else if I wanted someone sooner than she was available, but if I wanted her, they gave me her. I felt like I had someone who knew my story well, remembered the details of my situation and she held my hand (figuratively) through the process. She always had my chart in hand when we spoke, so there was never a time when she confused me with someone else.

They were realistic and upfront with me about expectations, the plan, etc and not afraid to discuss the next step or options. They LIKED that I was informed.

I trusted them, but they also trusted ME. When I called 7 days past my IUI to say "you're going to think I'm crazy, but I have a very strong feeling that this cycle worked but my progesterone is too low." Normally they tested it at 14days past but they went ahead and called in an order for a progesterone test and sure enough, my progesterone was DANGEROUSLY low. I'd have lost the darling boy sleeping next to me if they hadn't trusted me. I will never, ever forget that.

What a great topic! I personally love my RE, which is why I wouldn't change their office for the life of me. When I first met my doctor, I thought he had the personality of a fly, but once I realized he just had a dry sense of humor we got along just fine.

The things I like about the office are a lot of the things others have mentioned before:

- They don't make me feel like one in a million patients. They know me, that I have one child they helped make. They always know what's in my chart (and it's 9 years thick). When they are there with me, I am the most important person in the room.
- They explain everything, and if I have any questions, they are always a phone call away. If I have had any questions about medication instructions, there is always someone on call after hours to talk to and I don't feel bad for asking to talk to them.
- They know this is very emotional. They have often been available with tissues in every room, and the nurse did not hesitate to hug me when we found out we lost the heartbeat of our 10-week pregnancy.
- The conversations with the doctor about next steps are always a conversation. He asks what we would like to do to proceed and he makes recommendations. We definately feel like we are part of the process.

What a great topic! I personally love my RE, which is why I wouldn't change their office for the life of me. When I first met my doctor, I thought he had the personality of a fly, but once I realized he just had a dry sense of humor we got along just fine.

The things I like about the office are a lot of the things others have mentioned before:

- They don't make me feel like one in a million patients. They know me, that I have one child they helped make. They always know what's in my chart (and it's 9 years thick). When they are there with me, I am the most important person in the room.
- They explain everything, and if I have any questions, they are always a phone call away. If I have had any questions about medication instructions, there is always someone on call after hours to talk to and I don't feel bad for asking to talk to them.
- They know this is very emotional. They have often been available with tissues in every room, and the nurse did not hesitate to hug me when we found out we lost the heartbeat of our 10-week pregnancy.
- The conversations with the doctor about next steps are always a conversation. He asks what we would like to do to proceed and he makes recommendations. We definately feel like we are part of the process.

You can tell them, that from a patient to a fertility sister I would recommend that they all get a copy of your book and read it as if they're going through it, and realise that any one person that they see the next day might potentially have to live through that experience. I have not lived through all that you have T, but I have vicariously and I know from there how to empathise with the worst of cases.

The fertility clinic's greatest asset is that nurse that is empathically aware and emotionally alert and knows how to socialise all the staff around her to behave in similar ways, and the one who can translate this in the very small amount of time spent with a patient.

They could all learn a great deal about the world of their patients by dropping in at Fertilicare every now and then.

Things I have loved about past OBGYN (have not seen an RE).

1) One nurse was always the one I talked to, so she was always "UP" on our history and knew my case. I always knew to whom I would be speaking when I called with a question.

2) Both of the OBGYNs I loved the best talked to me FIRST in my street clothes about any concerns or questions, then left to let me get undressed and on the table. Both of them also made me feel like they had all the time in the world to listen to everything I had to say or ask. I HATE when doctors are like Speedy Gonzales and they won't let you even finish a sentence.

A few years ago, I went to the ER of a major teaching hospital in the college town where I lived. I had appendicitis, but my symptoms were atypical, and they thought it might be my ovaries. So I had my very first encounter with a speculum while I was scared, in intense pain, sobbing and surrounded by medical students and a doctor who talked like a robot. After they all left, one of the residents came back by herself, sat down, asked me if I was sexually active (they hadn't asked before, and I wasn't), and told me not to be worried, that Pap smears, sex, etc., would be fine and not that scary in the future. I understand that the ER is a fast-paced place and that some businesslike manner is appreciated, but what she said only took a minute or so and made a huge difference for me. I wish I remembered her name so I could thank her somehow.

My bad bedside manner experience: Nine weeks pregnant, in for an ultrasound scheduled to check for twins (no reason to think there was a problem). Got the frowny face from the U/S tech, who tells me she isn't authorized to give me results because she's not a doctor. I ask to talk to a doctor and am told there is one (radiologist), but that he'd prefer I WAIT UNTIL THE RESULTS GO TO MY OWN DOCTOR and speak to him. I mean, sure, nobody wants to be the bearer of bad news, but don't you think he owed it to me? (I, btw, gave him a piece of my mind when he finally came down -- I should NOT have to beg for information.)

Hearing, "I know this really sucks."

I know I have tons of things to say here but I am too busy to think right now. Just one thing comes to my mind: during my last IVF in Cape Town, I had a very sweet, soft-spoken nurse during the transfer. She kept pulling the blankets on top of me (even during the procedure!) to "protect my decency". After having a public vagina for so many years, I thought it was kind of cute...

Worst experience: Having my RE tell me in a very matter-of-fact way, when my most recent IVF cycle produced a whopping ONE egg, "The odds of success are not good. I think when this cycle fails, you need to stop doing IVF. I think that you are done." Yeah, I was done, but he could have told me that in a more compassionate way, I think.

Best experience: My first RE had a private waiting room where they'd put you and your husband while you waited for important test results (like that all-important HCG test). The doc would come in and give you the news, and you could stay in the room as long as you needed to. It was nice not to have to wait in the waiting room amid strangers, when you really felt like you were ready to cry. And it was nice not to be rushed out of there. There were comfy chairs and lots of Kleenexes in there too.

-Read the chart BEFORE you come in the room. It's not just more respectful, it's probably also more efficient.
-Be honest and thorough when explaining the risks of what you do, including the very real risks of twin pregnancies, and remember that your patients are not at an objective point in their lives. They may understandably need a little compassionate leadership about what is reasonable.
-Make sure all your staff have active listening skills.
-Encourage patients to find support, through support groups, blogs, therapy, whatever works for the particular person, and give information on how to access that support. You may not be able to provide them that type of support, but let them know exactly who can.
-Don't push the envelope about how many embryos you'd like transfer when she's in a gown, on Valium, and her chart clearly states that she's not comfortable transferring more than 2.
-Don't refer to embryos as "crappy to middling" or similar. One of my crappy-to-middling embryos is currently napping in the next room (or upstairs, who knows which is which?), and regardless, please use the precise terminology your expensive education provided you with, because that just isn't helpful.

-Thanks, T - I feel better!

I'm fortunate to only have had good experiences at my fertility clinic in Melbourne, Australia. Each Fertility specialist has their own nurse who deals with their patient's test results, appointments etc. I've formed a special bond with my nurse who has always been sympathetic, understanding and patient with me and I never have to deal with a stranger. I've found this very helpful especially in a difficult time like this.

We had a "counselor" (a session with her was mandatory) start telling us about a sperm donour in the States who, years later, came to claim "his" child from a couple who used his sample and then she said "Oh but I'm sure that won't happen to you". - It had never even dawned on me that was a possibility. Of course it's highly unlikely but what I don't need is more anxiety.

Also, if you are a doctor who can't be supportive (that just isn't what you are good at) make sure there are people on your staff who do have those skills (and they are skills). Be straight with your clients and say something like "Look, I'm not the kind of person who is going to hold your hand. If you need someone to talk to here are some resources for you. I know this will be hard but I'm not the type who can be available to you that way". That way there are different expectations and your patients are clear about your role. I expected emotional support by the time we got to an infertiliy specialist because I was basically very desperate/sad. What I got was clinical detachment. Great topic Tertia.

Lurker from the UK (our healthcare system is paid from taxes, if you pay privately undoubtedly the care is different):

Good stuff - a separate room with comfy chairs and boxes of tissues where we were taken after being told we'd miscarried at 13 weeks (attached to the Early Pregnancy Assessment Unit at the hospital for women before 16 weeks pg, they also have a dedicated Day Assessment Unit for women 16wks+ which takes the pressure of the antenatal clinic, and has CTG machines and very sympathetic staff).
- taking us out a different door of the ultrasound room after bad news so we didn't have to walk back through a waiting room of pregnant people
- kind staff who know your name and recall your history
- hugs from midwives giving you bad news (again)
- the sheer, honest pleasure on the same midwives' faces when they then see you in the antenatal clinic with a very viable pregnancy
- intelligent medical staff who involve you in the decisions, give you their considered advice but then give you your options allowing YOU to make the decision so that you are truly involved in your own case
- those same medical staff who speak to you as if you have brains as well as reproductive (or not) organs

Bad stuff - a very experienced ultrasound tech checking for signs of ovulation and endometriosis, who tells me that "the best cure for endo is to get pregnant you know" (this with an inch thick file, 3 miscarriages and numerous fertility problems)
- as a fertility patient having to share the ultrasound waiting room with pregnant women, even worse going for follow-up post-miscarriage scans and having to share the same waiting room...I know they don't really have the space, but it would have made a huge difference not to have to sit and see huge pregnant bellies when you're miscarrying or failing yet again.

In general my experiences have been overwhelmingly positive thanks to kindhearted staff who treat you as a person not merely another case.

We've done cycles in NZ and SA. We also have a South African GP here in NZ. We adore our GP as he takes the time with us that most NZ doctors do not. He has the most fab bedside manner and we like him so much that if he moves we'll travel miles to see him.

NZ negative experiences have to top out with DH being sent off to do his thing in the mens room which was a cruddy old chair on the way THROUGH to the mens toliet. So he had to lock all other men out of the loo to get his stuff done. He ended up doing the deed on a nest of clothes as men can't perform in that sort of chair anyway. The clinic had a pile of grotty magazines and DH nearly killed himself laughing when he opened one only to find 'Property of XXXX Clinic' stamped over all the ladies fuzzy bits!!

We get treated pretty much as a number here and they leave the bad news to the last hour of operation a day so they can get off the phone with you. The waiting room for IVF had three curtained chairs for the women to sit in and you could hear everything about the other cycles. The rationale was that it was a risk having partioned walls as something could go wrong with a patient and the nurses might not realise. You could also hear everything going on in the collection room! Now this is a top clinic in NZ and you can go private or public and you get treated slightly differently but you still have the same indiginaties.

In comparrison we loved CFC. It was modern, respectful and they weren't jumping up as soon as we got in the door with a bill for us to pay. Dr Le Roux spent 90 minutes chatting with us just finding out about NZ and our lives. We kept looking at our watches as we would usually get about 5 minutes with out doctor at our NZ clinic. We were told we could lie down for as long as 2 hours as the room had been booked for that long after our transfer! In NZ you get right back off the table as their are people waiting to get on it. Talk about a process line.

We loved CFC as they treated us like individuals not numbers. Yes, I do agree that you get what you pay for BUT you could pay in NZ and you'd still be getting the service I'd detailed above.

Tertia I've got lots more material if you want to get hold of me for more you will have the email address.

Gosh what a great topic to speak about.
I'm sure these sentiments were expressed already but here goes:
Knowing my name
Making those bad news phone calls with tact and sympathy (i.e. Your beta isn't rising, I'm sorry.).
Being good educators, making sure you let me know what to expect
No badmouthing other people in the practice, especially your RE! (This happened to me, the IVF coordinator questioned my drug protocol in front of me and said some snide remark about my RE doing things differently...unprofessional!)
Having the doctor know what is going on with you before your weekly meeting
Getting a hug from a nurse as she draws your blood to measure yet another failing beta
Having phlebotomists who know how to draw blood well
Having a doctor who calls you personally and hears that 'thing' in your voice so he asks if you are really okay
Being upfront and honest not full of bullshit, one doctor subbed for my regular RE and said to me, I shit you not, "Don't worry about any of this, we'll get you pregnant."

Wow, thinking about all this brought back more memories and feelings than I thought it would.
I would love to hear your talk.

1. Having a "back door" from the u/s room so you don't have to pass by the 16yr old pg teenagers.

2. knowing HOW and WHEN to simply say "I'm sorry", or "I know this sucks".

3. Having THICK walls in the collection rooms. DH can hear everything next door, which is why it always takes him so long!

4. Read my file before you come in my room. I had a nurse ask me when my last period was when I was there to schedule & learn about my options for miscarrying (ie natural or D&C). And didn't understand why it was so long ago.
Another time my doc was out, and her partner thought my next cycle should be clomid. After 3 yrs & 4 IUI's? After we (my doc and I ) had already discussed this being the last shot b4 IVF??? Read my file first idiot.

My bad experience happened at my first (and last!) RE appt. Without even getting my blood results back, the doctor decided that my PCOS meant I would likely only ever get pregnant using IVF. I told him that IVF wasn't an option for us -- we would have to pay out of pocket for all of it -- because we'd rather use the money for adoption (a sure thing in terms of getting a baby). He then proceded to argue with our decision, and told me that adoption was 'risky' and that adopted children often had 'problems' and 'difficulty bonding'. I then explained to him that *I'm* adopted, and don't feel that i have a lot of 'problems' and that I have a very close relationship with my parents! That didn't even phase him. He insisted that IVF was preferable to adoption in every way, and that was how we should spend our money. I found that entire argument offensive in every way:

1) If he wanted to argue for IVF, he should have done so on its merits alone, and not attacked adoption as a choice, and

2) he should have shown SOME compassion and recognized that this was a difficult decision for us and honored that!, and

3) waited until he got the full story from my bloodwork etc. before giving me all the doom and gloom by telling me that even WITH IVF, my chance of having a child were very slim.

I never went back to him, and based on his assessment my DH & I decided that RE's probably weren't the people to see.
So, I did acupuncture, herbs, and eventually Clomid and now have a happy 2 year old running around. The care I received from the 3 acupuncturists I saw was AMAZING!!!!! They trusted that i knew my body best, and listened intently to everything I told them. They were all so compassionate after my m/c, and one acupuncturist in particular helped me work thru my grief in the most caring way you could ever imagine.

Finally, the acupuncturists didn't treat me as if I was 'broken'. My favorite acu told me on my first visit "Your can carry a baby to term. Your body knows how to do it, now you just need to believe it." I thought she was nuts, since this visit came just 3 weeks after the RE experience. But turns out SHE was right and HE was wrong!


Perhaps this last thing is the one I would stress with the medical people you are going to speak to: we AREN'T broken! Perhaps we need some assistance, but we need so badly to feel like something isn't 'wrong' with us -- that our bodies are whole, just needing a little tweaking to work properly. There is nothing that shakes your belief in yourself more than infertility. It is the most powerless feeling in this world -- you can't do the thing which most 15 year olds seem to do effortlessly. I think that was the greatest gift my acupuncturist gave me: I stopped hating my body, and started believing in it again. I can never ever thank her for that enough. Of course, the 2 year old is quite a spectacular gift as well! :)

I was blessed with a good local clinic in the US. Not cutting-edge, technology-wise, but I did conceive my son with their help. And what I loved best about them was that Every. Single. Person. in the clinic (staff and doctors) was gentle, caring, concerned. And once a cycle started (even though they had advised me that it probably wouldn't work before I started), they were all positive and hopeful for me, every single time.

And they always met with me after the ultrasounds, after allowing me to -- get this -- put my clothes back on. Crazy, huh?

And if I wasn't happy talking to the person who had seen me that day, that is, if I had a difficult decision to make and wanted my own RE's input, they always tracked him down and got us in touch with each other.

* LOVED that my assigned nurse had e-mail - then I could bug her at odd hours and she could get back to me easily when the time worked for her.

* Didn't like that they seemed to expect everyone to meet their cookie cutter schedule and even though I ovulated early with first IUI they weren't willing to listen for my second IUI and had to give me the, "quick come in a day earlier" phone call AGAIN. Patients are UNIQUE and many of them are very aware of what their bodies are doing when - LISTEN to them.

* Was very grateful that they kept me on as a patient even after all their treatments failed and I got pregnant by some miracle 3 cycles later (using left over Progesterone). They had me get all my initial betas and first u/s there and were very very happy for me (and surprised as I was).
First hug I got from my RE.

p.s. the sisters at my first clinic had a very well paged copy of your book!

Quote from wishIknew: "Didn't like that they seemed to expect everyone to meet their cookie cutter schedule and even though I ovulated early with first IUI they weren't willing to listen for my second IUI and had to give me the, "quick come in a day earlier" phone call AGAIN. Patients are UNIQUE and many of them are very aware of what their bodies are doing when - LISTEN to them."

Amen to that! My specialist absolutely would not listen when I told him that I was an early ovulator and my schedule needed to be adjusted. He refused to take all the information from my 5 or 6 prior IUIs. He put me on his schedule, not the schedule my body was so insistent upon. This was the reason I believe that all my IVFs failed. I'm still a little angry about that.

Wow, great blog and terrific topic.
From my point of view, personal approach is absolutely mandatory. I hate it when I feel like stranger every time I call or visit the clinic. And I so hate it when the staff (docs or nurses) try to comfort me by saying: "oh, don't worry, you're both still young. My friend and his/her spouse got pregnant 'naturally' after 15/20 years of marriage, just when they gave up IVFs..."
Also, condescending tone or sentences make me mad... I am not stupid or uninformed if I am infertile.

And here's my 2-cents:
We had our 2 IVF's done in Korea, and it was a huge issue for us, even more so because none of the staff at the IVF clinic could speak any English, besides the doctor.
But still, all the nurses were extra kind and went ahead speaking to me and comforting me with sincere faces and voices, even though I couldn't understand a word.
During the egg collection procedure, which was the most painful of the whole thing to me, a nurse was standing right by my head, stroking my hair and looking into my eyes, saying "mihanne, mihanne" (which means "I'm sorry, I'm sorry") and "dwenchunna, dwenchunna" ("it's OK, it's OK") the whole time. My hubby couldn't be there in that spot at that time, as he himself went through a surgical sperm collection procedure and was recovering in the next room, so this nurse took over the role of comforting me during the procedure.
That's exactly what all of us who go through IVF need - sincere kindness and that human touch from the staff. Every woman has to feel that she is not the umpteenth case for the day or week or month, but that she is special in every way and needs to be treated that way. That's what pulled me through.
Good luck with the speech, and congrats with your new projects!!

We never got to the IVF stage, because we were so disenchanted with the hospital.

Here are my two cents:
- Make sure the same person sees the same patient every time. This way, you can build up a relationship.
- If you are only seeing patients every couple of months, be sure to have a good look and feel, just in case something (like a humunguous fibroid) has developed when it shouldn't have
- Don't assign the final appointment where your patient discusses whether to have IVF or not to the most junior, inexperienced doctor in the whole unit, who'll keep making unrealistic promises because she doesn't know the system.
- Be sure to tell them about the pros and cons of different ways of paying at the appointment, not in a letter sent out later
- Don't jump in offering IVF when you haven't even TRIED IUI yet.

Give please. You can't just ask customers what they want and then try to give that to them. By the time you get it built, they'll want something new.
I am from Uruguay and also am speaking English, tell me right I wrote the following sentence: "Air supply travel last minute travel,corporate travel and airline tickets."

With best wishes :), Landry.

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