If you want to know whether any system is working, ask the people who use it. If you ask the people who design and run the system, you will get an answer laden with statistics and figures. If you ask the people who use the system, you will get a straight answer. Granted, that answer is going to be biased. It doesn’t have the scientific weight of a statistic. However, what that answer does have is a unique perspective that only someone who has used the system as a consumer can offer. Who better to evaluate a system’s efficacy and inadequacies than those who use its services?
This concept very much applies to the field of health care. In fact, it is becoming a global trend to use the perspectives of patients and their families to identify where improvements are needed in the health care systems of countries around the world.
When it comes to the public eating disorder treatment system in Israel, there are some grave deficiencies which severely compromise patient care. Yesterday, patients, parents, and professionals came together to bring this burning issue to the attention of legislators in the Israeli Knesset (Parliament).
This was not my first meeting on this topic in the Knesset. I knew what to expect more or less; for example, I knew that I would get totally lost finding the room where the committee meeting was taking place because the Knesset seems to have some objection to signage pointing people to where they need to go. I knew that the protocol for being recognized by the committee chair if you wish to speak is to write a note and signal the attendant standing in the corner to come and get it from you. What I didn’t know is that for once (finally!), this meeting was about giving a voice to eating disorder patients and their families, and not only to bureaucratic parties. For once, patients and their families were welcomed and encouraged to share their personal perspectives and experiences regarding public eating disorder treatment services here in Israel. For once, this meeting was not only about facts and figures, but about actual people who suffer from this devastating illness.
The very real and very personal testimonials given by one parent and four patients were heart-wrenchingly sad, so much so that the committee chair who was running the meeting was too emotional to speak for a full minute following these accounts. So much so that many of us in the room were wiping away tears as we listened to story after story about failed treatments, broken souls, and the impossibly vicious inner struggle that eating disorder patients face regarding treatment—they may desperately want it, but they can’t handle it once the scale starts to nudge upwards. Sadly, this is part of the illness. We listened to account after account about problematic treatment, inadequate treatment, and families who made enormous financial sacrifices to fund private treatment when the situation became life threatening and there were no available public resources.
One of the patients ended her personal account with a negative anecdote about the head of an inpatient eating disorder unit who just so happened to be sitting directly across the table from her. As soon as she finished speaking, she got up, walked over to him, put her arm around his shoulder, and leaned down to give him a kiss on the cheek. I can’t explain why this incongruous, sweet gesture gave me such hope, but it was so touching for me to see that despite her negative experience in his unit, underneath it all, there had been a real connection.
I cannot imagine how difficult it must have been for these brave, eloquent patients to share the details of their painful eating disorder treatment issues in a public forum. Their personal accounts were so incredibly poignant, and the distress that it caused to many of us sitting in the room, including the Knesset members in attendance, was palpable. The messages were so important; one patient begged the Knesset members to resist thinking about eating disorders in the context of body image, dieting, or media influences, but to think about anorexia as the serious illness that it is. The critical importance of continuum of care was addressed, as was the desperate need for intensive outpatient treatment. One of the patients spoke of being a mother to three children, two of them autistic, and how traumatic it was for her to be separated from her children, thereby negating inpatient treatment. But the once-a-week outpatient treatment that is currently available through the public health system is not enough to help any of these patients, or the frightening multitude of patients like them who are falling through the cracks.
There is no magic button to press here, and many of the solutions to public eating disorder treatment deficiencies require budgets that our government doesn’t have. However, yesterday represented the first time that eating disorder patients in Israel and their families were given a real voice and asked in a meaningful way to evaluate the system in which they are treated; they were invited to offer the perspective of their lived experience and their insights into how to improve patient care. In doing so, they were empowered with the message that their voices count and that their opinions matter.
That, my friends, is progress.