NAMI Survey

Discussion in 'General Parenting' started by JJJ, Jun 3, 2009.

  1. JJJ

    JJJ Active Member

    Since nearly all of us have a child who developed a mental illness prior to 18, I thought some of you may be willing to participate (I got this e-mail from our local support group).

    NAMI would like to hear from you about your experiences discussing mental health concerns about your child with primary care staff and physicians. Primary care staff include receptionists, nurses, and physician aides. We understand that this is often the first opportunity that you have to talk about your child's mental health. We would like to learn what you need and value when communicating with these individuals and what recommendations you have for primary care staff and physicians to help ensure children's mental health treatment needs are identified early and linked to appropriate services and supports.

    NAMI will use this information to develop a publication for primary care staff and physicians on how to effectively communicate and collaborate with families on mental health issues. The resource will help primary care staff and physicians understand the key role they play in ensuring families feel respected, comfortable, and listened to when discussing the mental health needs of their child.

    This survey should only be completed by parents or adult caregivers with a child diagnosed with a mental illness who developed the illness before age 18. If you have more than one child with a mental illness, please choose one to focus on for the purpose of this survey.

    We estimate that the survey will take up to 30 minutes to complete. The survey will close on Wednesday, July 1st.
  2. gcvmom

    gcvmom Here we go again!

    I'll probably participate. Anything to help make the medical profession do a better job for all of us!
  3. totoro

    totoro Mom? What's a GFG?

    I will do it if I qualify. I do anything I can to help people understand those of us with Mental Illness and children with Mental Illness... thanks for the link!
  4. fight4justice

    fight4justice New Member

    Dear Nami

    My name is Alison *****, I live in England and read about you on the Support for parents web page whilst surfing the net about Conduct Disorders. It was with great interest that I read you are conducting a survey on children who have been diagnosed with Mental Health issues prior to 18 Years old and you will use that survey as a guideline to those professionals who work with these young children. I was wondering if I could participate in that survey via the internet as my son has had several emotional/behavioral assessments and diagnosis since the age of 9, he is now 21 but I remember everything vividly and have collected a 20 year written history of living with a child who was misdiagnosed and untreated for the problems he has had with his conduct disorders, 1st displayed at the age of 5. Your findings may well help in educating some of the professionals over here in Childhood Conduct Disorders. I hope you get this email as there is not this sort of survey in this country that I am aware of.
    Kind Regards
    Could you pass this on as I am unable to access thenm via their email contact from here. Thank you
  5. JJJ

    JJJ Active Member

    Just finished it and the only qualification is having a child who was diagnosis with a mental illness prior to 18. It says 30 minutes but I finished it in about 10, very simple and you can be anonymous.
  6. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    I found it a difficult survey to complete, actually. I had little to no interaction with my children's primary care doctor about their mental heath issues; I went straight to the tdocs/psychiatrists. Referrals to mental health came from the insurance company, not from the doctor. Is that unusual??
  7. JJJ

    JJJ Active Member

    I don't know. We went first to our pediatrician who was ZERO help as she didn't even have anyone to refer us to after the one psychiatric in their practice left. We got our referrals from the ER after Kanga's first suicide attempt.
  8. WSM

    WSM New Member

    It took me about an hour, but I wrote plenty in the narrative section. I emphasized: believe the parents, provide resources and how to obtain the resources, don't automatically assume everything can be fixed by drugs or behavior modification or parental training, and respect how much the parents know about the child.

    I actually said it was meaningless to tell parents about resources if they had no idea of how to actually get the resources to the child. "He should be in an Residential Treatment Center (RTC)" is meaningless if the doctor/specialist can't arrange to have him put into one. Saying, 'this is what he needs' and good luck winning the lottery of resource allocation is worse than saying, I don't think I can be much help. The second statement is honest, the first just burdens and frustrates parents.
    Last edited: Jun 3, 2009
  9. totoro

    totoro Mom? What's a GFG?

    That took me awhile!

    One of the things I put was that Primary Care Docs need to know what a Neuro-psychiatric evaluation is and refer their patients for them more often.
    I said that I have heard from so many parents that their doctor's had no idea what this was.
  10. totoro

    totoro Mom? What's a GFG?

    I also said that they should only be an adjunct to the Psychiatrist.
    They should be kept in the loop but our children should really be being treated by a Psychiatrist.
    I also said that we did have to use our pediatrician for everything at one time and that this is why if a pediatrician/Primary care doctor, chooses to treat one of our children they either need to be informed, become informed or refer us to someone who is.

    I wrote a lot as well.