The SCD™ Knowledge Base

Advocating for Yourself - 1

Joan writes:

Dear XXXX,
I need to step out of the closet for just a bit because I just must
respond to your and XXXX's dreadful and inexcusable events. As a nurse for over 30 years and a professor of maternity and pediatric nursing for over 20 (I also manage several online cancer support lists where we discuss what patients-adults or children-experience in the hospital and what to do about those experiences) I want to let you know for the future that there are many resources available to you to intervene when these things happen to you or your child.

The first and most important is that you and your husband are the experts on XXXX's condition and what his needs are - please believe that and know it in your heart. If you run into a situation like this, depending on the setup in the hospital, you have several options. Here are just a few:

*All hospitals have nursing supervisors. Don't hesitate to ask for or
call the nursing supervisor. Let her/him know the situation and point out how the diet is potentially causing harm to your son. You can clearly give a scientific rationale and tell the supervisor you'd like this remedied. On some units you can start with a Head Nurse or Charge Nurse.

* Many hospitals have Diabetic Educators, Clinical Specialists (or some
such similar title) who are nurses. They usually work with newly diagnosed diabetics and do intense education for the first week of admission and then are available for follow-up. Ask to speak to that person. Again, explain the situation and ask for assistance in advocating for XXXX.

* Never hesitate to head for the Hospital Administrator to complain about the care your child is receiving. You'd be amazed at how quickly a lower level administrator, usually in nursing, is assigned to assist you in getting the situation resolved.

* Most hospitals have Risk Managers for prevention of lawsuits. Taking it from a 'first do no harm' position, ask to speak to the Risk Manager. If you're lucky, the Risk Manager will be a nurse or other medical person. Explain how your child is being potentially harmed and putting the facility at risk of liability. They'll generally get on it pretty quickly.

* The more savvy hospitals these days have Patient Advocates or
Ombudsmen/persons. You might find out if your hospital does. They're more of an 'iffy' resource, depending on the person in the position and how the position is set up in the hospital in terms of authority and/or influence.

* Finally, a follow up letter to the Director of Nursing, Hospital
Administrator, Chief of Pediatrics, Head of Dietary, and Risk Management with a copy to Matt's chart, clearly outlining the situation you had (including how Matt could have been harmed and the potential liability to the hospital) would probably be helpful not only for your own peace of mind but in helping to prevent such a situation from occurring again. It's a good 'heads up' for the future.

From the LI listserve