Becky's Take on her care

SUMMARY OF WHAT WENT WELL AND NOT SO WELL IN MY TREATMENT

I prepared the following lists of what went well and not so well in early July, and will have one of the kids post it now in August. Most of the blog is upbeat, and rightfully so, but there were also some things that didn’t go so well in my medical care, and I wanted to note them too. My kids have been wonderful in creating this blog, but of course what I was really seeing, feeling, experiencing was not necessarily captured in the February, March and April blog entries by the kids. These are in no particular order.

This may be helpful to the Oversight Committee and MHDD Commission as they plan and implement a consumer driven system of care in Iowa. This is my brief consumer report from my own experience. Note: Nothing in the system of care can replace what I get from my husband, children, extended family, and friends. They are there 24/7 to support me emotionally and in practical ways.

Things that worked well in system of care

1. Ankeny Emergency rescue top notch, saved my life
2. All Iowa Clinic doctors have basic info on one computer so don’t have to repeat upon referral, same x-rays.
3. Case manager is a nurse and can explain things, and is a wonderful supportive person as well.
4. Team meetings weekly in Mercy Hosp Rehab coordinated by the physicians assistant, attended by myself, my husband, the rehab doctor, speech therapist, occupational therapist, physical therapist, nurses, and workers comp financial people. This is how family team meetings are supposed to work.
5. Wonderful doctors in their specialties.
6. Wonderful decision by case manager to let Dr. Smith continue to coordinate care through April, May, June, and July before turning over to workers comp doc for evaluation
7. Wonderful occupational and physical therapists, all great conversationalists too.
8. Wonderful co-location of therapists with workers comp doc in West Des Moines.
9. Wonderful transportation service by WDM Human Services bus and their retiree drivers. THIS IS HUGELY IMPORTANT.
10. Wonderful rehab location at Mercy Capitol where all my work friends were close by and could drop in and see me.
11. Case manager went to all key doctor appointments with me, explained what docs were suggesting and kept track of scheduling.
12. On-call homecare nurse prompt, cosmetologist as well as wound care on a week-end.
13. Worker’s comp paid for all my medicals without fuss.
14. Worker’s comp paid me weekly salary.
15. Unanticipated empathy from nurse at MRI test who had been through wearing a halo.
16. Good advice from Cousin Jennifer who had been through similar accident, hospitalization, and rehab. Very comforting.

Things that did not work well in system of care

1. Nobody told me the nightmares from medication were normal. I thought all the strange goings on in my head in those first dark weeks were reality.
2. Mental Health help lacking; only one group session a few days before discharge. I needed more encouragement/counseling earlier
3. Hospital staff during first 30 days did not tell me orienting stuff like:
1. You are in the hospital in intensive care
2. You have been badly injured
3. Date and day of the week
4. Introduce every nurse and doctor each time they were bedside
5. I couldn’t have food or coffee
6. I was taking intensive painkillers
4. Al was misinformed about his family leave act impact on summer unemployment.
5. Al had to spend hours on phone straightening out stuff like medical equipment deliveries, refund from Walt Disney World, new internet and address set up,
6. Nobody but relatives took the time to try to understand my communication in writing since I could not speak. No communication at all. No technology, pen and paper not always available.
7. Medical people missed taking care of horrible infection under my pelvic girdle: no nurses checked. No instructions on cleaning myself and washing girdle. It took a nurse not normally assigned to the rehab unit to discover what that awful smell about me was.
8. Medical people missed taking care of scab on back of head until too late: no one tending to it. Sent home with scab there and no homecare instruction and no nurse to take care of it.
9. Needed nurse, not personal assistant, during first days and weeks home from hospital for reassurance.
10. No training on how to write all appointments in black book, manage phone and transportation logistics and medical records, share medical information.
11. Personal assistant didn’t see scab/ infection on back of head though she was shampooing me.
12. Not clarified which prescriptions would be paid through workers comp, which through private insurance.
13. Needed working hospital bed first day home from hospital, didn’t get it for 9 agonizing days.
14. Needed working wheelchair first day home from hospital, didn’t get it for 3 agonizing days.
15. Needed working living room chair first day home from hospital, didn’t get it for 3 agonizing weeks.
16. No training for Al on how intensive my needs would be those first few days home from the hospital, no emotional support for him.
17. Was left alone and terrified first day home from the hospital.
18. No sympathy from day nurses on horrible pain from 5 day constipation, no work on making sure that didn’t happen again.
19. No help with the nausea/diarrhea once that started from day nurses in rehab.
20. Payment problem for visiting primary care physician.
21. Payment problem for hammertoe due to having to prove it connected to accident.