We can do better for our children suffering from mental illness

UMER2

Over the past year or so, a friend of mine in Ann Arbor has had to spend quite a bit of time in the emergency room with her son due to various physical and mental issues he’s had to deal with, and the experience has given her some insight into how differently we treat children dealing with psychiatric emergencies from their counterparts suffering from other medical conditions. What follows is the letter which she just recently sent to the leadership of the University of Michigan Hospital in hopes of initiating a dialogue about the way we treat children suffering from mental illness.

Dear Leaders of the University of Michigan,

Last night I took my 11-year-old son to the emergency room at Mott Children’s Hospital. We were treated so well, I was amazed. We were immediately taken back to a room where he was made comfortable on a bed with a choice of age-appropriate movies to watch and an attentive staff specializing in children who made sure that he felt taken care of (he’s completely fine, by the way).

I was amazed because, over the last few years, we have been regulars at the hospital’s psychiatric emergency unit. My son has autism spectrum disorder and major depressive disorder, a combination that makes him vulnerable to pervasive suicidal thoughts and plans. For him, and for our family, this is a very serious matter of life and death. He is an extremely vulnerable child.

The care we received at Mott was such a stark contrast to the treatment that we’ve received in the psychiatric ER. I looked around and wondered, with all of the room in this beautiful hospital, why has there never been a place for my child? When I think about it, I can’t help but cry. Where is the loving atmosphere for children with mental illnesses, who are in such desperate need of comfort?

As you may or may not know, there is no separate waiting room for children in psychiatric emergency. They wait in the same room as everyone else, which of course includes adults with mental illness, who can be scary and unpredictable. I have been afraid to go to the bathroom because I didn’t want to leave my son alone, and have had to wait until a staff member was available to watch him.

When you arrive you can expect to be there for days. In the waiting room. Days. This is because there aren’t enough beds to go around in the state, and you are at the mercy of this bed lottery. Even if you are offered a bed in a facility somewhere, hopefully you are experienced with the system enough to know what some of these other facilities are like, because there are places your child could end up that will make him worse than when he came in. Places where a child with suicidal depression is treated like a criminal, where you are only allowed to visit your child for an hour three days a week. These poor babies. So hopefully you know enough to speak up and advocate for your child. I have literally cried with relief when I was told there was a bed available for him at the University of Michigan. It is more important than winning the lottery.

While you are waiting, there is nowhere for you or your child to sleep. You sleep in a chair in the brightly-lit waiting room while he sleeps on a pile of blankets on the floor, where people have to step around him. Around two a.m., if there is space available, the staff might kindly move you to one of the side rooms, where your child can at least sleep in a reclining chair. By your second night there, you are so exhausted that this seems like a stroke of luck. At this point you may have been in this hospital waiting room for more than 48 hours.

You can tell the seasoned veterans to the ER because they show up with bags of stuff for their kids: pillows, toothbrushes, changes of clothes.

If you are a parent who is fortunate enough to have a partner or family in the area, you have someone to bring you food. If not, hopefully the nurses will bend the rules and order extra food on your child’s tray for you to eat. You may end up with nothing to eat for days.

Most of the staff are very kind and helpful. But some are not. Some treat you like this is not real, like you aren’t in a painful and desperate situation, and your child is a behavioral problem. They are not specialists in helping children. Once we were lucky enough to have a child life specialist visit us. We had been sleeping in the ER for three days. I was so grateful that someone finally treated my son like a sick child, and not as a problem. I didn’t realize that this is something that parents at Mott can just expect.

I know that you can’t fix everything in a day. But there are some important changes you can make that would help families tremendously. Open Mott to children with mental illness. Give them their own waiting room, far from adults who could scare them. Give them their own room to wait in, with a bed, where they can feel comfortable during what will inevitably be a long wait. Provide staff who specialize in pediatric care, who will lovingly and knowledgeably treat these most vulnerable of children. Provide support for families, who are exhausted and scared for their children’s safety and lives.

Please help break the stigma of mental illness and treat these children with the same love and care as all of the other children who come through your doors.

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16 Comments

  1. A concerned parent
    Posted June 10, 2016 at 9:28 pm | Permalink

    You may want to consider emailing or calling Marschall S. Runge, executive vice president for medical affairs at the University of Michigan, a person who could potentially get this fixed.

    mrunge@umich.edu

  2. JoAnn Barrett
    Posted June 11, 2016 at 3:13 am | Permalink

    Could the treatment of these children be any more draconian?

  3. Janice Anschuetz
    Posted June 11, 2016 at 7:12 am | Permalink

    Thank you for publishing this. Anyone involved in “mental health” services for children and their families know that Michigan has a nightmare “system”. Bless this family.

  4. Merrill Langfitt Guerra
    Posted June 11, 2016 at 9:00 am | Permalink

    As someone who is intimately familiar with that room in the picture from both the adult and pediatric perspective, I would like to add a few thoughts. First we are so insanely lucky to have this resource. As I teenager with depression there was no psych ER and just to be seen by a psychiatrist we had to drive an hour away. For inpatient it would have been 2 1/2 hours. So while I don’t think this is a perfect system it has been a lifesaving haven for my family. Second, this person’s child has the bad luck of having both autism and MDD. I am guessing the need for 24 hour care by a staff person dedicated to her child has contributed to her days in the ER. Not a justification but definitely a reason. They don’t have enuf capacity to handle special needs patients with MDD. Something they should address. For a child with MDD only, the wait has been routinely about 8-12 hours before we made it thru the evaluation process and a bed was available. This was all in the old unit. They actually have been building a new unit in Motts and if it’s anything like the adult unit, I’m sure it will be wonderful. I am really hoping that along with that move that they are adding more beds and individual caregivers. Finally I think it’s important to also look at the larger picture in that it’s damn near impossible to find psychiatrists and therapists and if you have a child with MDD you’re going to need BOTH. Also if you have a child with MDD you are probably going to cycle thru until you find one that “clicks” because if they don’t that therapist can do more damage than good. Also there is a very dis jointed system to coordinate care and schooling and very little help for parents to figure out how to best advocate for their kids. Oh and the last hurdle that comes to mind is the silence we all seem to impose on this disease as if it’s a personal failing. Major Depressive Disorder is a medical condition affecting the chemical balance in the brain. It’s no different then diabetes or cancer and is more life threatening for kids and young adults than either. Those of us who suffer and have family members who suffer should be open and honest and help the general public understand it’s not “having a bad day” or “attention seeking” or whatever else they try to attribute to it.

  5. A UofM Hospital Employee
    Posted June 11, 2016 at 9:33 am | Permalink

    Folks may not know that until a couple months ago Child and Adolescent Psychiatric services were administered at the adult psych hospital, but a dedicated Child and Adolescent Psychiatric Hospital (CAPH) was opened in the new Mott hospital on the 8th floor. This addresses at least some of the concerns of the letter writer.

    I am not involved in clinical care, but was involved in the building out of this space and the staff in that area are, from my somewhat limited measure, extremely dedicated to making the hospital experience much better for kids in this new space.

    UM gets a lot of things wrong, but we need to recognize when they do well, and I think this is one of those things they are doing right.

  6. Maria Huffman
    Posted June 11, 2016 at 11:18 am | Permalink

    ,Probably better thing to ask for is a way to shorten the wait, though that is debatable. So I worked at DMC when the 29 minute Er wait was first proposed and implemented and the way that happned was that length of stay had to be reduced.

  7. Maria Huffman
    Posted June 11, 2016 at 11:21 am | Permalink

    Personally, if you have to wait that long, Iwould advise leaving and camping nearby or staying somewhere nearby, and just let them call you when they have a person available to evaluate the child.i would not make the hospital waiting room too inviting..just saying.

  8. Maria Huffman
    Posted June 11, 2016 at 11:22 am | Permalink

    Because what they are doing is they willbe evaluations on how the parents are with the kids as well as making people wait…then they figure out how to approach the family, and personally I would not do that for them.

  9. EOS
    Posted June 11, 2016 at 9:28 pm | Permalink

    What constitutes a psychiatric emergency for an individual already diagnosed with a chronic psychiatric condition? What treatment is available in an emergency room? Is it not possible in our current health system to get urgent care treatment from the physician that provides ongoing care for the patient and is familiar with the patient’s history? I don’t know – that’s why I am asking.

  10. Maria E. Huffman
    Posted June 12, 2016 at 6:50 am | Permalink

    I do not know, if someone waits days for emergency care, was it an emergency ignored by the hospital…
    So what happened at DMC is that a person was seen at triage…I can’t remember the exact order..do they see a clerk first? then a triage person? then get placed somewhere right then?
    But what happened is there were patients who were ready to be admitted, deemed admissable cases and ordered as such by the attending ER doctors, who had actually seen and evaluated these people personally, and then these patients, waited in the emergency room, on a stretcher for a long time…and then the ER staff had to take care of them, while the disease course progressed or in some cases resolved. They were no longer doing ER care, they were do Floor medicine care.

  11. Maria E Huffman
    Posted June 12, 2016 at 9:35 am | Permalink

    An ER is suppose to be able to handle whoever walks or is broug ht through its.doors. I never worked with kids. I can not answering your questions about this topic. I think hours long wait in the waiting room is a UMHS should address, and publicly.

  12. R
    Posted June 12, 2016 at 8:53 pm | Permalink

    Mark’s friend referred to the bed lottery and this what it feels like; you watch anxiously until shift change and then count down until 30 minutes after and ask your case worker if a bed has opened anywhere, they tell you they are waiting on some calls back. Another 30 minutes pass and if this is only 24 hours in then the response is going to be “sorry, no” and you know you have another 8 hours, have to wait until next shift change as your vulnerable child gets more and more afraid of the loud shouting as tempers fray, as they and you go without sleep, as you fire off a quick update to your boss, apologising again for running out in the middle of the day yesterday, as you think of who you can ask to bring you something to eat.

    Unfortunately Maria if you leave the Psych ER you “lose” your place waiting for a bed; the assessment for admission tends to be done within about thirty minutes to an hour, however once it has been determined that admission is approriate the wait is for a bed to open up in a ward somewhere in the state, not necessarily just at the U of M hospital.

    During this limbo period if the child leaves the ER then the case is considered closed, should they return they are placed at the back of the “line” ; that line includes all other psych ER’s in the state as beds on mental health wards, especially child and adolescent mental health wards, are so few in number.

    The child must remain supervised by a legal guardian through this time, woe betide to the single parent who may have to arrange someone to watch their other children or miss work for several days waiting in the ER; that legal guardian cannot be a long term partner, only a guardian under the law.

    Leaving is not an option, asking someone to call when there is a bed available is not an option, having your friend, the child’s grandparent or the person you’ve been dating for ten years and live with come to watch the child while you go explain to your boss or your other children what is happening is not an option that is available.

    The ER is not too inviting, no-one waits there by choice but because the alternative is often unthinkable, unspeakable.

  13. Maria Huffman
    Posted June 12, 2016 at 11:17 pm | Permalink

    I am sorry it is so difficult for the children and the families. That is truly a terrible situation.

  14. Sally Day
    Posted June 13, 2016 at 6:20 pm | Permalink

    Anyone know how St. Joe’s handles cases like this? Or if it does at all?

  15. Parent Out Here
    Posted July 2, 2016 at 10:13 am | Permalink

    I would not recommend anyone go to U of M’s psych ER for children (sadly that is the only option in the area). My child was having a psychiatric emergency and tried to stab my other child. I intervened while waiting for an ambulance to come.

    When I got to U of M they started acting real strange to me and kept asking my child to come with them alone. Next thing I know I was called into a room with a very smug social worker who said she reported me to Child Protective Services for abuse! Somehow my child had a scratch above her lip which I imagine happened as she was either destroying my house, trying to bust down my bedroom door that we had to lock ourselves in or while she was trying to bust my car windows out.

    CPS showed up at my house to investigate me, they went to my job, they went to my children’s schools and contacted my children’s fathers to see if I was a fit parent. I was terrified, humiliated and devastated. Not only that, at the time I was actually working with foster car children. It was one of the worst experiences of my life.

    I am not the only one this has happened to. I work with families who have went to psych ER for help and leave out the hospital with a CPS case.

    Apparently it’s not just psych ER. I have a friend who is an upper middle class scientist and now a stay at home. Her children have unique medical issues and she sought out of state treatment that her insurance would not cover because the the treating doctor’s treatment was making her kids worse. She went to the news about it. After the segment aired, CPS showed up at her house. U of M called CPS on her after the segment aired!

    St. Joe’s only has a psych ER for adults.FYI Sally Day.

  16. MB MSW
    Posted August 28, 2016 at 7:09 pm | Permalink

    I’m so sorry that your child and family has to go through this. As a mental health clinician through two different places of employment, it is so hard to find available resources.
    Contrary to the person listed as a U of M Employee above, the Child Psych division has been a separate unit from Adults for YEARS. They just recently moved from the original Mott to their newly designed unit at the new Von Voigtlander building. PES is an excellent resource, but does not have the ability to maintain distinct pediatric vs adult waiting areas.

    The long waits in PES (or any ER) for psych admissions is directly related to the lack of available psychiatric bed space. I work this problem weekly. There just are not enough beds, and beds for patients who need more 1:1 attention (those with disruptive behavior, medical impairments, fall risk, developmentally delayed) often require 1:1 staffing ratio for safety of all patients and staff. In my experience, kids/young adults on the autism spectrum and geriatric patients with dementia/behavioral disturbance have the longest wait for a bed (followed by those needing a medical psych unit due to need for IVs, oxygen, fall risk, etc.). Even though they are waiting 24-72 hours for an admission bed to become available, leaving the ER does mean “losing your place in line.” if you are safe enough to leave the ER without additional help, then you “likely don’t need” an inpatient admission. While Autism and Mood disorders are chronic conditions like diabetes or congestive heart failure, they do also have exacerbations where acute care in an ER/hospital setting is very warranted.
    It’s not a UMHS problem. It’s not a St Joe problem (while they see kids for Psych in their ER, outpatient clinic and day program, they do not have an inpatient child psych program).
    It’s a funding problem — mental health is not reimbursed to the level it needs in order to make it “worth” taking up space and staffing in a hospital building. Medical procedures generate far more revenue, so have more hospital real estate.
    The staff often do a remarkable job trying to ease distress and find solutions, with minimal resources and constant pressure for shorter lengths of stay.
    Outpatient – the average wait to see a Psychiatrist for the first time is about 8-10 weeks if you want to use your insurance. Those who can afford to pay out of pocket typically can get seen sooner.

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