When parent voices pop up

Logo_Portal_POPWhen I first began talking openly and publicly about my son’s mental health challenges, other parents would pipe up about their own experiences.  I expected this.  What I didn’t expect was the number of people who pulled me aside in the ladies room or followed me to the parking lot to share that their daughter already had 5 diagnoses and was only 12 or that the insurance company wouldn’t budge an inch for treatment their son needed.  They were parents, aunts and best friends who were uneasy talking publicly but had interesting, often important things to say.

I remember one mom, a confident professional, pulled me aside but had a hard time coming to the point.  She first complimented me on my necklace, talked about the weather and asked how my son was doing today.  Her 13 year old son had been sent home from parochial school because he obsessively drew pictures with blood dripping from the ceiling, the walls, the trees, the buildings and most everything else.  They didn’t want him to come back. “No one at work knows, she confided.  “And I don’t know what to do next.” Ironically, we had just been in a meeting about transitions.

I wondered, “How do you capture those voices and experiences so they can be part of the conversation, just as if they had spoken up themselves?”  I decided that one wonderful way is through surveys.

Now, let’s be clear.  What I mean here are parent-designed, parent-piloted and parent-analyzed surveys.  The kind where parents tell you what THEY want you to know, not necessarily what researchers might want to study.  The kind where the questions are crafted to be parent friendly in tone and wording. The kind where parents often pour their hearts out when asked to answer, What else do you want us to know?  Some even write, ”Thank you for asking. No one else ever has.”

Parents respond to our surveys in droves about specific topics such as waits for services or their worries about privacy.  They care deeply about communication with their child’s providers or school staff.  They feel conflicted about psychiatric medications, even though most report that it works, helping their child get through the school day, manage his moods or even help keep her out of the hospital.  They report jaw-dropping experiences with stigma again and again.  They have important and interesting things to say.

Yet, they are rarely asked their considered opinion of the mental health services their child receives either by provider agencies delivering the services or state agencies funding them.  (They might be asked if they like the service but aren’t asked for specifics or to write about details they care about.) They are seldom given the opportunity to decide which outcomes matter to them and their families.  Is it school attendance for their child or is it more parent time with the other siblings? They are unlikely to have the chance to write a review as they can do with other services they purchase.

That’s so 1999, isn’t it?

The retail and hospitality industry completely understand that in today’s world, customer voice can have a major impact on their business and reputation.  Anyone can leave a review on Yelp, amazon or TripAdvisor, reviews that are there for others to read before they decide to buy.  Long gone are the days when customers called an 800 line or wrote an email.  Online reviews and opinions are easy to find and read, comment on and add to. Ideas about customer service are shifting rapidly and in the customer’s favor.

The consulting firm Walker, said in their report “Customers 2020″ that by 2020, customer satisfaction, more than price and product, will be the key determinant of success.  Customers leave more often, they noted, because of poor quality service than because of price considerations.  Unlike mental health, companies are pretty unlikely to blame the parent, um, customer if they say the product doesn’t meet their needs or they don’t continue using it.

The children’s mental health system lags far behind. Of course health care, especially children’s mental health care, is not the same as a car dealership or fancy hotel.  It’s harder to actually get into treatment or services for starters.  There are eligibility or medical necessity or determination criteria to be met.  There is a shocking shortage of professionals and openings.

Health care professionals are beginning to realize, however, that customer or patient satisfaction matters.  According to Jeffry McWilliams, a physician who writes for KevinMD, customer service in a health care setting means spending time with each patient and treating him or her with respect and courtesy.  It’s about effective communication as much as effective services.

Low parent, um, patient satisfaction has other consequences, too.  For every person who complains, there are 20 more who do not, but are unhappy.  70% of people who received unsatisfactory care won’t come back to that facility or provider again.  75% of dissatisfied health care consumers talk about it and will tell 9 family members or friends.  I can vouch for the last one.  It’s a much larger number if the parents are on social media.

So, back to those parent surveys.  Last spring, PPAL posted three “pop-up” surveys and parents rushed to take them.  They answered questions about access, about medications for their children and about stigma.  Many of the questions were the same ones asked over the last 15 years and many of the answers were the same ones as well.  Parents had interesting, often important things to say.   Three of the top findings included:

  • In 2001, 7% of parents reported that their child was uninsured; in 2016 that number had dropped to zero.  Yet, even with insurance coverage, 83% report that they wait weeks, even months to get appointments in the same proportions as 15 years ago.
  • In 2006, 85% of parents reported that their child had had only one prescriber for psychotropic medication.  In 2016, only 16% have had one person prescribing medication and almost 20% have had 6 or more people prescribing for their child.
  • 1 in 4 parents reported that their child had been treated differently by the emergency room staff when seeking treatment for a medical problem, once the staff found out the child had a mental health diagnosis.

Parents didn’t have to pull me aside to tell me how they wait preposterous amounts of time for services, although they do.  They took the survey online. The answers of the outspoken parent and the quieter one combined in the pop up surveys to point out the same waits and gaps.  No one has to corner me in the ladies room to tell their stigma story or how they spend more time looking for a prescriber than staying with one.  (Some still do that, too.) They just went on line and told their story there.

Parents are the amazon reviewers, the mystery diners and the consumer reporters of the children’s mental health system.  They are savvy, practical and honest.  They can certainly point out what is working and what is not.  My fantasy is a TripAdvisor-like site for children’s mental health with a free app for every parent’s smart phone.  Maybe then parent satisfaction would pop up as a priority.  I know they would have interesting and important things to say.


8 thoughts on “When parent voices pop up

  1. I would absolutely LOVE to be a reviewer of the services my child and family have received over the years. Let’s make it happen!

  2. This would also be great for those of us who are trying to refer families for services. Some agencies I know, others are newer and I am less familiar. Sometimes we just make a choice based on a shorter waitlist or the availability of a Spanish speaking provider. I have often wished for Yelp Reviews for CBHI Providers.

  3. A couple of ways to participate in a review and discussion is to volunteer on a Family Advisory Council at either the hospital, mental health facility or community service agency where your child has been treated. i am on the Family Advisory Council for Psychiatry at Boston Children’s Hospital. I am also on the Caring Together Family Advisory Council. Caring Together services are DMH and DCF funded Residential, Group Home Follow Along Stepping Out and Continuum Services and the council serves as the voice that influences their practices, policies and procedures for successful family outcomes. Both are always looking for new volunteers and more diversity of representation. Most hospitals and mental health facilities have Family Advisory Councils, just ask. The contact person for Caring Together is Pamela Ferguson at Pamela.Ferguson@state.ma.us or 413-452-2375. Please join us!

    1. Thanks Leslie! We would love more voices on the Family Advisory Council. Especially from the Boston area.

      Kristi (Caring Together, Parent and Coordinator of Family Driven Practice- Southeast region)

    2. Thanks Leslie for encouraging families to become involved and participate in Family Advisory Councils(FAC). It is very important, if there are no FAC at the hospital or service agency, then families can create one. Good Job in getting the word out 🙂

  4. I would personally appreciate the honor to review my child’s services that have been provided over the span of the last several years. I believe there is much to be gained from parental/guardian insight and perspective and hearing the experiences. It can only serve to improve the quality of care provided to families and assist agencies better their services and hopefully improve outcomes. That could be achievable if both parties could and would be cooperative and supportive. There have been recent strides and gains in services areas and bridges yet there’s many miles to go. Gaps to be filled and obvious adjustments need to be made. I am hoping to give a call in to Caring Together again this time to inquire about Council. I thank you kindly for the information you’ve provided.

  5. I love the idea that was mentioned.. A Trip Advisor of reviews.. What a great idea for families and for providers.

    But the most important things need to be heard then completed: If we need easier language it is given, if we need flexible policies- we work to make it happen!

    There are to many groups that have wonderful voices but the ACTION of doing it is hard.

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