Attitude to Advocate

My allergic daughter recently underwent an upper GI scope, to check for EE among other things. The hope was that we would discover the reason for so many of her persistent tummy aches. Thankfully she does not show any signs of EE at this time, and we were able to rule quite a few maladies out.

One discovery that I did make that was quite startling is that the medical facility we used seemed inadequately prepared to care for my food allergic kiddo. There were mis-steps throughout our visit that added up to a picture of inadequate food allergy knowledge among the staff. My husband and I were surprised and upset by this, but we maintained our focus of getting my daughter calmly through her procedure.

Once home I had the ability to reflect upon our experience. Anger and frustration bubbled just under the surface. The things that could have happened played through my mind. Action needed to be taken. Determination to address the issues took hold.

My first step? To reach out to my fabulous food allergy support group. I sent out an email to the group, currently 150 families, to ask them to share their experiences with this facility and ask how they had addressed any issues. Before approaching the hospital, I wanted to understand how they had dealt with past complaints so that I could properly prepare myself. I was prepared to hear stories of families that had voiced their concerns and been ignored or dismissed, I was prepared to get angry and take my complaints past the hospital to the public eye. I was raring for a fight! Go!

My allergy support group didn't let me down. They sent their experiences, their stories of how food allergies were not properly accommodated. Yes! I knew it couldn't be just me. This problem really IS systemic.

The down side? When you have a child in the hospital the focus is on getting your child through whatever brought you there, not on tackling administrative issues. Very few, and I mean VERY few, of my fellow allergy parents had addressed their issue with the hospital.

The anger in me fizzled out, and the logic took over. There can be no attack on an unprepared administration. Obviously if they are unaware of the problems, they can not take steps to correct them. My new approach: bring these issues to the hospital and give them a chance to respond.

Step one: Write a letter. I included not only what had happened that concerned me, but offered to work together to find solutions. I included quotes from other allergic parents about their experiences to illustrate that this was not an isolated incident. I was very specific about the issues that were unacceptable, and very firm in requesting corrections, and very positive in offering to help. As this problem is bigger than one person, I sent my letter to...well... more than one person. Twelve, in fact. Anyone in administration who I thought would have an interest in correcting systemic problems.

My letter got a response. Yeah me! I was invited to a meeting at the hospital to discuss my experience and my ideas for improvement. Woot!

Really? I expected a combative mood at the meeting. I expected to be patronized, patted on the head, and told that they had their policy under control, thank you very much. By the way, sorry for your isolated experience. This is what I expected.

Preparation was key in my mind. The need to walk in with credibility, and the desire to stay focused on the issues at hand. First up? Put my recommendations in writing. I drafted a paper that focused on changes that could be made throughout the hospital to improve their ability to care for food allergic patients.

I printed FAAN's guideline on how to establish food allergy procedures in a hospital setting. (Which, by the way, is quite good.)

When I walked into that meeting I was dressed professionally, so as to be respectful of the professionals meeting with me and to be taken seriously by them. I sat down with a handout for each person in the meeting (and a few extras, just in case) that included my original letter to the hospital as well as my ideas for improvements. I handed each of them a copy of this, I put the FAAN publication out for them to scan, and I started by thanking them for meeting me.

The conversation was inquisitive, positive, and encouraging. Every person at the table was actually listening to me! Granted, I did note varying degrees of skepticism, but no defensiveness or hostility. The atmosphere in the room was of sincere interest in improving their processes, and genuine curiosity about my ideas. It was fabulous.

I have gotten several follow-up letters detailing changes that are being made based on the discussions at that meeting. I am impressed not only with the facility for being so open to making improvements based on customer feedback, but with myself. I am proud to have approached such a large institution with my requests in such an organized and professional manner. I am ecstatic to have impacted the experience of food allergic little people that will be staying there in such a positive way.

The lesson here? I was ready to be irate and demanding, which would likely have gotten me exactly nowhere. Stepping back I was able to approach with logic rather than emotion, suggest solutions and build an attitude of teamwork rather than merely point to problems and demand change. This situation could have been much different, but my attitude made a world of difference in the way I was received. Remember when you are advocating for your child to be respectful, come to the table with solutions, and focus on being a team player. Together, we can make a safer world for our food allergic children.