In an open letter to Children's I wrote the following but then decided not to send it. My momma read it and her response was "if you don't have anything nice to say . . . well, then don't say anything at all."
So, since I am not going to send it I thought I would post it here. Hey - at least it makes me feel better.
What are your thoughts --- send it?? Don't send it?
To Whom It May Concern:
I am writing to inform you that my son, Nathan will no longer be a patient of Dr. T or Children's Medical Center of Dallas. Nathan's medical records have been transferred to his new endocrinologist and we have already had our fist appointment.
I am also writing to let you know that this is the 1st time in the past 8-months that I feel really good about my son's health care options and his treatment plan. As you know, Nate was diagnosed with type 1 diabetes at 14-months of age. In a few short months Nate will have had type 1 for longer than he has not had it and to me that is huge. Nate will have diabetes his entire life --- that will be a lot of highs and a lot of lows & hopefully a lot of in betweens too. As a mom this diagnosis was devastating and from the beginning I have had nothing but problems with Children's Hospital and their level of service and care for my son.
On diagnosis day we went through the ER and waited for hours before being seen, we were then taken into a small room with a nurse that spoke little English and watched while he poked and prodded on our screaming son. I won't go into all of the details but it was certainly the worst experience of my life. Once we were transferred to a room the experience got slightly better when we were met with the smiling faces of the nurses working on the 6th floor. Unfortunately, our relief was short lived once we had a chance to look around the small, cramped and disgustingly dirty room we were given. We spent 3 long days in this dirty room with our infant son, trying to keep him off of the filthy floor and away from the filthy bathroom. We were also bombarded with hours of training after sleeping for only 2 hours on the very small, very dirty and very uncomfortable chair/bed that was in our room.
The educator that came in the 1st day gave us a ton of information and we tried our best to absorb it all but it was very overwhelming. We felt that she was frustrated with us because we could not give her our full attention but the fact of the matter was that Nate was in the room at the time of training and he required a lot of our attention too. The hospital was on lock down due to the swine flu epidemic and we were not allowed any visitors for the entire time we were there. What were we supposed to do?
The educator that came in on the 2nd day quizzed us on the things we had learned the previous day and then gave us more information to digest. At this point I had had a chance to go home and collect myself enough to do a little bit of research on type 1. We had a lot of questions for educator #2 and when we asked them she made us feel completely stupid and incompetent. It was not a good feeling.
Once we were released from the hospital we came home and sorted through the MANY prescriptions & instructions we were given and began our new normal life with a son diagnosed with type 1 diabetes.
We were devastated, confused, scared, and dealing with a 14-month old with a chronic illness and a complete new lifestyle for our simple family of five.
Then the nightmare really began. Calls to the 24 hour line, messages left, calls not returned, one ridiculous answer after another from fellows, interns, doctors, and nurses who had no idea who we were and clearly did not understand how to treat diabetes in a 1 year old child. Promises were made, promises were broken and there was absolutely no follow-up by anyone at Children's Hospital. Life Specialist? Nope, never cared enough to call.
We attended Diabetes 101 and then requested the Take Charge class. We wanted to learn, be self-sufficient and do the very best for our son. When I called to schedule that class they said there was only room for 1 so my husband would not be able to attend. I attended this class by myself, feeling frightened, sad, overwhelmed and very disappointed that my husband, my partner, Nate's father was not there to learn these life saving skills with me.
There are never appointments available, we were forced to book 4 months or more out. Nate hated coming to the appointments. He never felt comfortable there because we never saw the same person more than once. How can we build a good rapport with anyone there when we only see them one time? Children need to be comfortable in their surroundings and feel trust and comfort from their medical team. That never happened.
We continually asked to at least be able to work with one CDE but were always turned down. There was no consistency between all of the different educators. One would tell us to do one thing and another would say the opposite. The system is broken!! It does not work. Nate is not a number, bar code or a case number! He is a little boy with diabetes that never received the help he needed from one of the leading children's hospital in the country area (although ranked #30 out of 30 for their Diabetes and Endocrine Disorders hospital). We have been sad, frustrated and angry and now we are leaving. My concern now is for the other parents who will be devastated with a T1 diagnosis and feel not only the overwhelming emotions of the diagnosis but also the complete frustration with the CMC system.
I do not want there to be confusion about my frustrations - - - there are some very lovely people in the endocrinology department. The frustration is that we never get to work with the same person. I am very grateful for the help we received getting Nate on the pump. I just wish it had not seemed like such an uphill battle once we made the pump choice that we did.
The billing system and department is a nightmare. We have been billed for things we should not have been billed for, we have bills for classes that our insurance will not pay and the overall confusion over what is an actual appointment versus a training class is RIDICULOUS. There is NO way we would have attended pump start if I had known it was going to be billed as a training class -- I am pretty sure I could have slapped that pod on Nate's bum without driving 30 miles and being billed $300 for a training class. Pump follow-up - - - again, I would not have driven 30 miles downtown with Nate to have him poked and prodded, his A1c tested, & blood pressure taken if I had know that that too would be billed as a training class. That is another $500 that our insurance will not pay because they only cover 3 training classes per year. Jim and I know what our insurance covers. We found out the hard way last year. If I had known that these appointments were actually classes - - - we would NOT have been there. Now, we owe CMC a ridiculous amount of money and if I have to decide between life-saving insulin for my son or paying for ridiculous charges from CMC -- the choice is pretty obvious isn't it?
The final thing that I would like to mention is that in the short time that we have been working with another practice, Nate's A1c has already gone down considerably. Whenever I had concerns about Nate's high bg levels I was told that A)highs were not as important as lows and someone would call me when they got a chance and B) at his young age an A1c of 8-9 is acceptable. How could I not be frustrated with this system? As I mentioned earlier, Nate will have diabetes his ENTIRE life. I find it hard to think about the complication he may have to endure because of high bg. Even at his young age it is so important to keep this terrible disease under tight control to avoid future complications.
Nate is my son and he has type 1 diabetes. Although I do not want type 1 to define him it is certainly a very large part of his life. I have hopes and dreams for my son as all mothers do. It breaks my heart to think about him not being able to live a long, happy life --- marriage, children, working hard, fulfilling all of his dreams. He deserves the very best and I will work hard my entire life to make sure he gets the very best treatment. Who knows what his future holds . . . he may be the one that finds the long sought after cure for diabetes. So, yes I am taking my son out of the mess that is the Children's Medical Center and giving him a better future and more control over his diabetes.
Great letter, Laura! Whether you decide to send it or not, they might read it here anyway! :)
Our A1C goal is always 7.5-8.5. If you want any pointers, let me know. I am SO happy you have a new team in Nate's corner! I am sure you will get that A1C where you want it with there help!
You know... I think I'd send it. Because they need to know what's going on. Things will never change if no one ever takes the time to point out what could be better. Great letter!
Reading your letter makes me even more aware of how wonderful Cincinnati Childrens is! We are truly blessed to work with them. So I KNOW what good care looks like- and it is not at all what you described in your letter.
I am SO glad that you have found a new practice and are loving it and doing well. ((hugs)) to you both (all)!
If you decide to send it, I would say it needs to go the chairman of the hospital (or whatever the highest leadership position is), and maybe copy to the board of directors because if you send it to the endocrinology department, it will just get buried. Someone higher up the chain needs to know there's a weak link! You might add a note acknowledging a tone of anger and frustration in the letter--but the facts are facts, and they led to that anger and frustration. I'm sure there are mitigating circumstances for some of what you've had to deal with, but surely some improvements can be made--and maybe you will be making life better for the next family that faces what you've faced.
Oh Laura - what a great letter! Absolutely dear - send it! Things don't change until people speak up. Heck, send it to the CEO of CMC! They should know. You were very fair and stated great points and your experience. They need to hear about this so another family doesn't have to endure what you did. I am so glad that you changed practices!
I would send it...they need to know. But I would send it to the right person. Don't know who that is...maybe you need to send it to a whole bunch of people to make sure the one person who needs to read it, does.
You know J had an awful experience when he was diagnosed with a certain hospital, and to this day, 12 years later, I still regret not sending a letter to let the powers that be know what a mess everything was.
I am BEYOND happy that you have found a new place that you feel comfortable with! The only advice on the letter is in the second to last paragraph, it isn't clear which place said they would call for lows only...the old or the new. I know it is the old, but I think you need to be clear that it was THEM who have these ridiculous standards.
It feels good to get it all out, doesn't it?
I agree with the mentality of "if you don't have anything nice to say", but this is not about your friend or your neighbor. This is a business and this is feedback. You have taken your business elsewhere and I respect you for wanting to explain why.
More importantly, I'm so happy to hear that you have found a doctor for Nate that you are happy with. That's a good ending to this story that started so very wrong.
Laura - it is a great letter & I hope you do send it. Maybe it will help other families get better care in the future. Maybe you should send it to a TV station and let them do an expose! I am glad too that you found someone else to see Nate that you like. We made a similar switch here from the Seattle Children's Hospital to a private practice and it as made such a difference for us.
I say send it! I'm stuck there for now, and if I can't send them something like that (Lord knows I have enough of a reputation as it is... :)) then YOU CAN. Do it for Liam, and all of the other kids who will start their type 1 journeys there because there isn't another option.
The child life specialist didn't ever call me either!!!
By the way, you are an AMAZING writer!
I'm so sorry your dx experienced sucked so much more than it had to. Totally send the letter, babe. Tell it like it is and let them know they have work to do so their hospital and staff are actually serving their patients and families. And, don't be shy about sending copies to anyone in the organization you feel needs to know about it. - Mo
It broke my heart to read your letter. We had such a good hospital experience. (Cooks in Fort Worth.)
I think you should send the letter. You put your heart and soul into that letter---and in such a respectful way. (I'm sure that took a long time!)
You just may help another family.
Are you kidding?? I am in healthcare! I have family with this illness!! Send it after you sign it with a Sharpie!
Send this letter ... YOU are his advocate and YOU could help someone else. Your experience should be shared. Send it to as many CMC officials as you have the address for ... YOU have a voice and it is powerful. Your letter is not nasty it is true and amazingly objective. May your voice continue to be a blessing to others as it is to your family. - Regina
As a parent of two children with Type 1 Diabetes who have been patients at Children's for the past 15 years, I feel sorry for your experience. We shared a totally different one on both occasions in the hospital with each of our childrenn ( a son diagnosed at the age of 3 who is now 18 and headed to colleg and a daughter who is 4 and diagnosed at the age of 6 months). I cannot imagine taking them to anyone else and am saddened that my son will have to since he is now of age. I know not everyone has a good experience, but I do feel they are a small percentage and that overall they are an exceptional center!
Laura, I am only now reading this and everything else that is going on with you and your family...I am so sorry, and I will be adding the Houston Family to our prayer list at church ASAP!!!
Having worked in healthcare for over 7 years, if only on the financial side, I say SEND THE LETTER and send it proudly and with confidence... My mom has had so many health problems my entire life only to see her living the rest of her life now basically sitting in a chair at age 67 that I don't have a lot of faith in ANY healthcare professional...sad to say... I think more letters like yours should be sent until Hospitals and Healthcare providers see that their patients aren't just numbers or dollar signs, yet people with real needs and people who love them and care about their care!!!
I love you, and I'm always here if you ever need someone to talk to or pray with or just vent!!!
Love - your long lost roommate!!! Tanya
Laura, it saddens me to think about what your family is going through. Personally, I am not familiar with Children's Hospital as none of my family members has been treated there, yet.
I couldn't help but notice the endless criticism of a nationally-ranked hospital by an unbiased, highly-respected publication. You complain about all of the education you went through while Nate was still a patient in the hospital and couldn't focus on all of the information because Nate required a lot of your attention. Yet, on the other hand, you complained about not being able to have your friends come visit due to the the "lock down" which was in effect to protect the hospital's patients -- including your son. How would you have reacted if your son had also caught the swine flu because anybody and everybody were permitted to visit their friends? Thankfully, he didn't and perhaps gratitude is owed to the hospital for making a huge decision to limit visitors for its smallest and most delicate patients.
Finally, please do your homework. An A1c represents approximately 90 days of blood sugar values. Since you've only been with your new clinic for "a short time," you owe a thank you to your previous providers as Nate has obviously benefited from their assistance, education, and advice which played a large part in achieving the most recent A1c.
I wish Nate all the best as he learns to successfully live with a chronic illness (and he will!). And, personally, you seem to be a great candidate who would benefit from counseling to help you deal with children with chronic health conditions. Life, for the most part, can easily be viewed as a glass that is "half full."
First off, let me thank you for your comment on my blog!!! I love having other parents out there who know exactly what I am going through. I have just read through a little bit of your blog and this post caught my eye. When my daughter was first diagnosed we were sent to an endocrinologist here in town and let me just say that the experience was less than pleasant. Reading your story brought back so many bad memories! Finally after a year we found a GREAT endo and we couldn't be happier. When we finally got fed up & left the 1st endo, I wrote a letter to them that was NOT NICE at all and I didn't really give a crap. I sent it off & I felt great about it. Your son is YOUR SON and you are his #1 advocate. That is the most important lesson I've learned over the past 5 yrs of my daughter having this disease. I would love to stay in touch with you if that is ok!!!! Thanks, Jennifer
Just a Mom
I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.
The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.
Please consult your doctor if you have any questions or concerns about your health care options.
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