Good news. My letter to Said Doctors Clinic that I recently blogged on was received. I first received a phone call from someone who was very grateful that I sent it. I was apprehensive. She said that they were basically assembling a group of doctors to review O’s chart to conduct an ‘internal investigation’ of sorts to see if somewhere a long the way they missed something, and how they could better their practice and learn from their mistakes. I thought…’well, atleast they responded and it sure feels good to hear those words. I sensed sincerity in her voice, and I desperately wanted to believe that it was true. She said that she would contact me when the investigation was complete and let me know how it went. I figured that it might be months, maybe a year, maybe more. Maybe never. 3 weeks later, she phoned back and she almost had a sense of enthusiasm in her voice. That was puzzling. I listened. She said that O’s chart was reviewed and that they whole heartedly agreed with me that they ‘could have done a much better job’. Wow…BLOW ME OVER! I had to sit down. In the middle of the floor. She continued to invite me to take part in a parent panel, in an advisory capacity about how to make the patients/parent’s experience better in such a situation. Wow again!
I’d love some feedback from others to take to my first meeting on Tuesday. Anyone who has Special Needs kids, has received diagnoses that were difficult to hear, has children with autism, or are just plain in tune with this process…
I would like to hear what others think on these questions that I’ve thought up in my mind. Feel free to email me privately or respond to this post. I’d really appreciate your feedback and will of course keep the information confidential.
Thank you so much for any information that you might be able to provide me with!
-Karen
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1. How would you have liked to have been included in the diagnosis process of your child? What worked? What didn’t?
2. How could the doctor/clinic/hospital have bettered this experience for you? Your family? For your child?
3. If you have a child with autism/special needs, what are 3 things that you wish you could tell your doctor that would help you NOW in your child’s and your family’s healthcare situation?
4. If you have a child with autism/special needs, what are 3 things that you wish you could tell your doctor that would have helped you EARLY IN YOUR CHILD’S DIAGNOSIS to make your child’s and your family’s healthcare situation?
5. In terms of your doctor’s actual office space, what would make your visit with your child with autism/special needs easier? How could they make the actual visit better? Include as much detail as you would like to express. Parking? Location of building? Check-in process? Expectations of staff to help accommodate you? Waiting room? Clinic rooms? Special accommodations?
6. What is some vocabulary that is complementary to where you are in your parenting of a child with autism/special needs? Vocabulary that is not helpful to where you are in your parenting of a child with autism/special needs?
7. What was/is your expectation of your doctor in the process of your autism diagnosis for your family? What was/is your expectation of your doctor (not autism related doctor, but gen practice doctor) in the process of caring for your child with autism? For the rest of your family/children?
mound of shells 
Karen,
I am so pleased for you and for all the parents to come and for the practitioners in your physician’s office that they are truly taking a Process Improvement approach to care. Bravo to you for sending them the feedback and investing the time to help them understand your experience. In health care, in general, there has been a huge leap forward in the last decade or so, recognizing that a positive patient experience is in everyone’s interest. This is from both a business and a clinical perspective. It’s a perfect marriage. Best of luck as you enter this newest phase of helping them design their systems to support quality care. Keep us posted on how it goes.
Take Care, Lori
Karen – Thanks for taking this on. When Lukas was 2 I expressed my concerns to a doctor who is no longer there, and he said that no, Lukas was far too engaging to have autism. At 3, the first time the outside Occupational Therapist we hired saw him, she said she was almost certain he had autism and to get on the list at Childrens ASAP. I don’t even talk autism to my general practictioner, which is a bit sad. I save all my questions for my therapy team and the folks at Childrens Autism Center (formerly ASTAR). There should be someone with training that you can talk to immediately about your concerns. Perhaps an occupational or speech therapist with autism training? Because even if the doctor does listen, they recommend you “get on the list” at Childrens to get tested, which takes 6 months. Same waiting time with Seattle Childrens Autism Center, just due to the high demand. And wasted time at that age is not good. I understand that there are parents who are hypersensitive to everything, but Dr. Stobbe says a mother’s “gut instinct” is often right, and there should be someone to talk to right away. I was lucky enough to start outside speech, occupational and ABA therapy for Luke at 2 1/2 and 3 and basically have these therapists and the teachers at the developmental preschool guide me on Luke’s treatment, with support from ASTAR. Not everyone has that option, and the primary care doctor should be able to provide more immediate and helpful resources. Thank you so much.
These are excellent questions! I am so proud of you for writing the letter in the first place, but pleased that there has been a response from the Dr.’s office.