I have talked a lot about Brice Stanley, PA-C, Billy Ray’s primary medical provider in terms of the importance of Doctor-Parent relationships. The relationship with your child's provider is important; however, I want to reinforce the importance of the thoroughness and attitude of the provider. I hold Brice out as an example to all medical providers whatever their degree because of his compassion and because of his thoroughness.
The only doctor I ever fired had Harvard Medical School degrees all over his offices and was a well-respected specialist. He refused to look at the documentation I prepared with Billy Ray’s history, etc.. He would say “just tell me” but then cut me off in the first sentence. Examinations were minimal but he kept writing prescriptions. I could not trust his judgment because he didn’t have a true understanding of Billy Ray.
In an exam a few weeks ago Brice mentioned that one thing he has learned from Billy Ray is to never stop at the “usual” but to look for the “unusual” as well. That is so important. Over the years, I have heard the word “usual” so many times, I have come to hate it. There is nothing usual about Billy Ray.
If our complex special needs children have multiple situations going on, findings and examination can be masked by other things going on. It takes the patience of Job to stay in there looking for answers.
The reality is that not all providers have had adequate preparation to work with a complex child. As Kate Crow, Genetic Counselor, stated in the Foreword to Parenting Your Complex Child (AMACOM Books, April 2006), there are not as many studies done on complex children. This complicates their care for the provider and the parent(s). Thus, the finest medical education may not cover a child just like yours.
Attitude, listening skills and a desire to check every detail for the unusual are probably the most important traits you can look for in your medical provider. I am so thankful we have found that.
Another role of the "primary" that is so important is in effect case manager. The primary must pull together appropriate specialists and maintain communication with them. Many times you don't know the specialists so your trust must be in your primary to interpret data and find an appropriate specialist. Brice is especially good at admitting when he needs another opinion and staying on top of communication with other professionals. I think that is an important part of the job but not always present in all doctors.
This past weekend I realized that if Billy Ray survives all the ever changing medical issues it will be because of the thoroughness of his "Dr. Brice". I take great comfort in knowing that if we lose the battle down the road, we will have done everything that could be done for Billy Ray because of the team headed by Brice Stanley.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group