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All of us on ACEsConnection represent a wide variety of professions and interests. But, at one time or another, we're all patients, and many of us have experienced adverse childhood experiences.

If you told your doctor about them, what would you want your doctor to say? What would you want your doctor to do? What information would you want your doctor to give you?

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I agree, Sam. It would be nice if doctors and their staff even knew what we were talking about.

I think the best response would be something sympathetic or empathetic. Abuse and trauma are so wrongfully normalized by our culture. If the conversation comes up, I think many folks would feel relief that someone/anyone knew that their abusive/neglect-filled past was related to their current health problems. That ah-ha moment can be therapeutic in itself. 

I'm not sure doctors would say much more since they are taught to practice universal precautions and not make people think they are worse off than they already are. One would have to be a very educated patient to press their doc for specific life course risks.

One thing that might be helpful is if the doctor shared the statistics of how many people have ACE scores similar to their patient's. If a patient was interested, maybe the doc could provide a handout or tell them about : http://tiny.cc/gotyouracescore

Jane, I asked my rheumatologist if he had ever heard of ACEs. He said no, so I gave him a copy of the study, and told him my score (4). I also said "no doctor EVER asked me what happened to me in my childhood, and yet, they are dealing with the consequences of that trauma now. I hope he passes it along, and Iwill follow-up with him when I see him in June.

Jane,

What comes to mind is what happens already - I'm the one telling my doctor or chiropractor or massage therapist about ACEs, etc. and educating them.  Some are interested, some are not. As Dr. Felitti said on the recent video on this site: doctors/practitioners get furious and are often resistant to the ACE information. But that's been the plight of things that are innovative throughout history - people don't recognize innovation and often they resist it. ACE is no different.

Ted

I'd want him or her to ASK, not SAY.  And I'd want my doctor to ask how I thought those experiences were affecting me later in life.  Of course, the unaddressed issue is how this would ever come up.  Basically, patients never bring this up, and physicians are no more likely to.  We found, in 440,000 adult patients  where we routinely inquired, that this is best done initially by a well-devised, comprehensive medical history questionnaire that is filled out at home.  This bypasses all sorts of time and interpersonal problems and then lets the doctor bring it up by saying, "I see on the questionnaire that.......  Can you tell me how that has affected you later in your life?  

Very helpful, Chris. I'm assembling a chapter for a white paper that members of the Academy on Violence and Abuse and the National Health Collaborative on Violence and Abuse are putting together for health practitioners.  The white paper "seeks to advise clinicians regarding useful “next steps” after learning their patient has experienced adverse childhood experiences." 

The chapter I'm putting together provides resources -- handouts, books, organizations, etc., online and otherwise -- that practitioners can provide their patients and clients. 

I agree that physicians should know something about ACEs, because if a patient tells them, they'll know how to respond. I told my OBGYN that I'd been sexually abused as a child. His response -- "It took you so long to tell me!" and then he changed the subject. I would have preferred that he ask more questions, specifically if there was something he could do to make the exams more comfortable for me. Another physician I told -- a woman who was getting ready to grab a piece of vaginal tissue for a biopsy -- looked shocked and then tried to rush the procedure, poking at me to relax. Yep, that worked oh so well. 

I think I would want him/her to then ask if this impacts my experience at the doctor and ways to make it more effective. In terms of information, I would like to be told how to take action to prevent ace specific health problems from developing and things to maybe keep an eye on that otherwise might be overlooked in the future.

I've been very pro-active with my doctors sharing the ACE Study and trauma-informed care. Most doctors don't have the time to deal with this subject, sadly. One rolled her eyes as if to say, 'so whatelse is new?' One of my doctors, a physiatrist, had an ah-ha moment when I shared this information with her. She disclosed to me that this is making so much sense w/ the majority of her patients. My physical therapist was also receptive and wanted information. These are professionals who see the physical effects of the psychic trauma directly and the inability of the body to heal with the Cartesian/dualistic mind-body division that they are traditionally taught. My physiatrist recommended a book called 'Figuring Out Fibromyaligia'. The author is an MD who was afflicted with fibromyalgia symptoms while she was in medical school. It's a very interesting read. She also talks about how there have been connections to PTSD and CSA if my memory serves me. Another validating book worth reading is 'The Body Bears the Burden' written by a neurologist who decided to write what he felt was the truth late in his career. He discloses that if he wrote this book earlier in his career he would have been ostracized by his peers/profession.

Jane, sad that your OBGYN put the blame on you for 'not bringing it up sooner.' Unbelievable.

Brenda, FYI Ginerva Liptan MD, in the first book, talks about rheumatism.

I forgot to include this in my last post. I think this is a good one-page, two-sided handout: http://www.voamn.org/TIC-Poster

 

Brenda, I had to do a double take b/c I have actually heard "your" story before. Adult survivors not wanting to attend the funeral of an abuser or a funeral where the abuser will be present. I'm thinking now, it's obvious this scenario would present itself years later in just this setting. And, of course, the family is in so much denial they blame the victim and retraumatize him/her. I remember Ashley Judd saying her sister and mother denied her allegations (hate that word) of CSA. Someone told me they recanted later but I did not see that part of the story. So many times the victim gets retraumatized again by just telling their truth. At the end of 2012, PLOS published an article called: Trauma – The Importance of the Post-Trauma Environment and stated:

"...That the environment just after the event, particularly other people’s responses, may be just as crucial as the event itself."

This puts the onus on bystanders/witnesses who in our society don't take on the responsibility they should (think Penn State). I am reminded of, yet again, another quote by Cynthia Ozick, a writer who has studied the Jewish holocaust:

”Indifference is not so muchâ€Ķchoosing to be passiveâ€Ķit is an active disinclination to feel. Indifference shuts down the humane,â€Ķdoes it deliberately, with all the strength deliberateness demands. Indifference is as determined--and as forcefully muscular--as any blow.” 

Not my what my doctor said! When I asked her if she had considered screening all patients for childhood trauma, she said, "oh, we know who to ask."  I was stunned. We had just completed the paperwork for my medical leave from work one day/week for chronic PTSD. She was completely ignoring the fact that a) she had never asked me anything about my background and b) I had told her the PTSD is due to childhood trauma.

She has never asked for any additional information. I would think she would want to know if I was sexually abused, for example, since that could have major consequences for medical exams. I haven't pressed any information on her, since she is clearly not ready to hear it.

I would like to see a day when all doctors' practices screen all patients at intake, and ask questions about traumatic experiences during annual exams.

Actually, since I went through the trauma of dealing with an abuser in my family attending my own Mother's funeral against my wishes and was devastated when my family turned on me instead of directing their anger at the abuser in the family, I was emotionally devastated and talked to my internist and my rheumatologist afterwards, and have been talking about it ever since. I view it as part of my medical history which affects how they treat my conditions. Auto-immune disease like my rheumatoid arthritis are affected by emotional distress.

Hi Jane,

I had never once heard about ACEs in all four years of medical school, and I never heard of "trauma-informed practices" either. 

This year, as an MPH student, I learned about trauma-informed practice through my efforts to create a sustainable collaboration between a student-elective I started on Oral Health and Healing Hurt People.  I decided to take Sandy Bloom's course "Violence, Trauma & Adversity" this quarter, and that is when I learned about ACEs.  This was truly my "Aha" moment!  

  Looking back on my third and fourth years of medical school I now realize that if I had known about ACEs and trauma-informed practice my approach to patient care would be very different. 

The need to embed a trauma-informed practice curriculum cannot be overstated!  I am working on writing a paper on what such a curriculum might look like for Sandy's course, and for submission to our curriculum committee.   

Does anyone know of existing models? 

sam

Chris, This is uncanny! It was our cousin who also was the abuser. There are people in my family who know, but no one in HIS family knows. It's the worst kept secret that almost everyone else knows. And I am te only one talking, confronting, dealing. And everyone else shuns me for it. It is such a devastating experience. Decades later.

Late to the discussion, but it caught my eye because Dr. Felitti will be conducting a break-out session for physicians at our conference in Los Angeles on March 19th (1-2:30pm).

This is how we've been talking about it:

Integrating A Comprehensive Medical History into Everyday Practice

Although the implications of the ACES study now permeates health and social services and the questionnaire is being implemented in 20 states and 14 countries in the world (through WHO), many physicians are unaware of the study and wouldn't know what to do if someone brought them their ACES score.

We invited the doctors from Kaiser Permanente but they have a mandatory training that day. If you know any physicians, please be sure to pass the information along. Here's the link

http://www.echoparenting.org/professional-services/conferences

We have a price for the whole day(s) of the conference, but if there were physicians who were only able to come for the break-out we would work with them on price.

Thanks!

Louise

PS Jane, are you still coming?

Kathy -- While we're waiting for Dr. Felitti's response, I'll provide some info....here's Dr. Felitti's post about how he integrated ACE screening at Kaiser:

How we integrated ACE screening into the Health Appraisal Center at...

Also, family services in the public health dept. in Port Townsend, WA, is screening for ACEs -- http://acestoohigh.com/2012/03/23/public-health-clinic-adds-child-trauma-to-smoking-alcohol-hiv-screening/

And Dr. Nadine Burke is screening for ACEs in her pediatric practice in San Francisco. She did a webinar for the  American Academy of Pediatrics about it.  

Personally speaking, I would want nurse practitioners and physicians to be able to talk about this with a patient, especially since they may need to change their approach and treatment. It's a physical and mental health issue.  

-- J.

Thanks, Sam. I think you're exactly right on both points, and I think the first point, that many docs are avoiding their own past trauma, is a major factor. 

Chris posted a link to the paper you mentioned, which I checked out and realized I have that paper. Just haven't read it yet! So now I'll move it to the top of the pile.

Best,

Kathy

Thank you, Jane. I have printed out that post, and will read the Port Townsend info as well.

Yes, I said "nurse" in the post above, but in fact it would either be a nurse practitioner or a social worker do the follow-up after the doctor has addressed the issue in the appointment. In Vermont, most practices are enrolled in the state-wide Blueprint for Health, which provides the practice a team of care coordinators. There are always nurses and usually social workers on these teams. In drafting the screening guidelines, we consider these teams a critical piece to get past the screening barrier of "I don't have time for that."

BTW, we have Dr. Felitti coming to Vermont in October for a state-wide conference on ACE, aimed at primary care physicians, their teams, and community service providers. We're designing the conference using Dialogue Education, which is based on adult learning research, so that everyone will engage with the information at the conference, and have breakout sections with their community service partners. We are hopeful this will help with that very tough issue of implementation. We'll see!

Best,

Kathy

Brenda, I totally understand. I was told years before about the "identified patient." It's an old psychology term for the one person in the family who is the healthiest amidst the dysfunction and denial of the rest of the family. They are the one who seeks help. I'm sorry you are all alone in your family. It IS devastating. Time certainly does not heal all wounds. Not in such a sick group/family climate. And then we as survivors sometimes reach out to our community for help or in the role of an advocate and get retraumatized, yet again. It's not a good scene to put it mildly. Take breaks from the "fight" when you can to recharge your battery and try and establish a support system. Just please know you are not alone.

No, Louise, I won't be able to make it, unfortunately. I'll be on a reporting trip in Central CA that week. 

btw, you might want to tell the people who attend your workshop that the Academy on Violence and Abuse has gathered a group of physicians & researchers to put together a white paper for health care practitioners about ACEs. It's meant to provide information to physicians about ACEs and guide them on what to do when a patient asks them about ACEs. It'll be about 15 very short (two-page) chapters, written in a medical journal style with which they're familiar, with footnotes and useful links. They're hoping to post it on the AVA site in a few weeks.   

Cheers, J.

Dr. Felitti,

Have you ever used or heard of a primary care practice using the ACE score as a screen? I'm working with a group in Vermont drafting screening guidelines for primary care. We're concerned about the length of any tool we propose, since the practices are so busy and a long screen tends to provoke a reaction of "I don't have time for that."

We're considering suggesting instead that practices offer the ACE score calculator to patients. Our thinking has been that the patient could be invited to fill out the calculator but not necessarily return the sheet to the nurse/doctor - instead, they would only be asked their score, as in indicator of the "trauma-load."

All patients indicating any past trauma would be offered an appointment with a therapist. We haven't gotten beyond that point yet!

We are strongly encouraged, of course, to be offering only evidence-based tools, so I'm wondering if there are any studies of the ACE score (I haven't found any), or any other materials supporting its use.

ALso, do you have an opinion on this idea?

Best regards,

Kathy Hentcy

So tragic.  I think you are absolutely correct: most physicians are simply not comfortable hearing this.  There are two plausible reasons:

a) Avoidance of possible triggers that may provoke unconscious (or even conscious) and non-integrated emotions relating to their own traumas or vicarious traumas

b) From my highly limited experience as medical student, physicians are trained to always ask, "what am I going to do with this information?" and "how does it affect treatment?"  - so the obvious concern is that we are not taught anything about Trauma-Informed Practice and we are not taught about ACEs...

Dr. Felitti has addressed this at Kaiser in his questionnaire (which he spoke of on this thread) in a section of his book chapter in "The Hidden Epidemic: The Impact of Early Life Trauma on Health and Disease" edited by Lanius & Vermetten. 

In his chapter, titled "The relationship of Adverse Childhood Experiences to Adult Medical Disease, Psychiatric Disorders, and Sexual Behavior: Implications for Healthcare," he speaks about the integration of the ACE Study findings intoo clinical practice through expansion of the Review of Systems and Past Medical History sections of an AT HOME questionnaire. The clinician is then trained or, perhaps a better word, prompted to respond in a trauma informed manner. The implications are tremendous! 

As his post indicates that over 440,000 adults completed this questionnaire, so that's a lot of data.  I think that this incontrovertible evidence truly highlights the need for a new paradigm in medical and health provider education.  Perhaps more insight can be garnered from this and translated on a larger scale?  I think so!

It's a brilliant read! 

sam

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