The Family Experience with Primary Care

1. The Family Experience with Primary Care Dana Markey Program Manager NAMI Child and Adolescent Action Center July 28th, 2011 AAP Future of Pediatrics Mental Health Preconference

2. Statement • “I have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider of commercial services discussed in this CME activity.” • “I do not intend to discuss an unapproved/investigative use of commercial product/device in my presentation.”

3. Learning Objectives • Provide a broader understanding of the issues most important to families who have a child living with mental illness. • Offer recommendations onhow tostart a conversation about mental health, effectively communicate with families who have concerns about their child’s mental health and promote the early identification and intervention of mental illness. • Share resources NAMI developed for pediatricians on the family experience in primary care.

4. What is NAMI? • NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. Founded in 1979, NAMI provides support, education and empowerment for more than 500,000 members and supporters. NAMI raises public awareness, builds community and steadfastly advocates for access to treatment, services, supports and medical research.

5. The Facts • Thirteen percent of youth aged 8-15 live with mental illness. This figure jumps to 21 percent in youth aged 13-18. • Half of all lifetime cases of mental illness begin by age 14. • Despite the availability of effective intervention, there are average delays of eight to 10 years from the onset of symptoms to intervention—critical developmental years in the life of a child. • Fewer than one-half of children with a diagnosable mental illness receive mental health services in a given year.

6. “Primary care physicians who can help identify potential mental illness can save a child and parent years of pain.”

7. Your Unique Role • Primary care physicians are often the first point of contact for families when it comes to their child’s health and well-being. • This puts primary care physicians in a unique position to identify mental health concerns and to communicate these concerns with families. Mental health is no exception.

8. NAMI Survey • NAMI surveyed more than 550 families in 40 states who had a child living with mental illness. • They responded to a broad range of questions about their experiences discussing mental health concerns in primary care.

9. Survey Results • The results from our survey affirmed the important role primary care physicians play in the lives of children and their families… • ___ percent of families had discussed mental health concerns with their child’s primary care physician. • ___ percent felt that it was important for primary care physicians to discuss their child’s mental health even if there were no concerns. 89 83

10. NAMI SurveyCreating a Welcoming Setting • Families shared recommendations on how to make primary care offices more welcoming to conversations about mental health. • Display resources. • Provide a private area. • Educate office staff. • Create a safe zone. • Provide mental health screening. www.nami.org/primarycare

11. “Understand the red flag symptoms of mental illness to look for, listen to parents/caregivers concerns and point them in the direction of mental health specialists and resources. Have pamphlets on mental health diagnoses available in the waiting and exam rooms just like you do for physical symptoms. Have resources and phone numbers for parents to walk out the office door with.”

12. NAMI SurveyEncouraging Open Communication • Families suggested to ask to encourage open communication. ?’s • Do you have any concerns about your child’s mental health? • How is your child behaving in school, at home, in the community and with peers? • Have you noticed any changes in your child’s moods? • Is your child sleeping and eating well? • Is there a family history of mental illness?

13. NAMI SurveyEncouraging Open Communication • Helpful comments to make when a child has a mental illness… • “There is .” hope • “You are not alone.” • “It is not your fault.” • “I understand.” • “You and your child have many strengths.”

14. “Just ask the child is anything bothering you today? Sometimes all it takes is the question of concern and they open up like a book.”

15. Taking Action • Families also suggested action steps primary care physicians can take when mental health concerns are raised. • Ask questions. • Screen. • Evaluate. • Discuss options for services. • Suggest local resources.

16. Taking Action • Refer. • Follow up. • Encourage and empower families. • Provide treatment when mental health providers are not available. • Check in.

17. “Medications are not the only answer. Counseling, family training and information about services and supports in the community are important.”

18. Additional Comments • Families shared positive experiences with primary care physicians, highlighting your strengths and the impact you can have on youth. “Theysaw beyond the illness and said they see a very bright, together young woman in my daughter and that was definitely a positive that helped to get us through this.” “When we met our primary care physician and told him our son had a mental health condition, he said my son has some challenges too, so I know how important it is to understand what is going on so we can support him. My son immediately felt at ease and shared a lot of information with him, including information that he had not shared with us. What an ice-breaker!”

19. Survey Report and Helpful Resources • Survey Report • Brochure • Fact Sheets • Other Resources Visit www.nami.org/primarycare

20. Coming Soon! Stay Tuned! NAMI received a grant to develop a new family guide titled, A Family Guide on the Integration of Mental Health in Primary Care to better educate and inform families and other stakeholders on this topic. To receive updates on our work, join our e-group by emailing danac@nami.org.

21. Now What? • Review the survey report, brochure and related materials to learn more about what families value in the primary care setting at www.nami.org/primarycare. • Visit www.nami.org/primarycare to access resources you can share directly with families or display in your offices. • Take advantage of materials developed by the AAP and learn more about mental health in primary care at www.aap.org/mentalhealth. • Get to know what resources exist in your community by contacting your NAMI State Organization or NAMI Affiliate at www.nami.org/local. • Meet with NAMI State Organizations and NAMI Affiliates to talk about ideas for collaboration. They would welcome a chance to meet you! Get a free subscription to NAMI’s Beginnings magazine!

22. “This is a real issue for families and shouldn’t be ignored because it is uncomfortable. The earlier it is treated, the greater chance of recovery.”

23. Contact • Dana Markey • Email: danac@nami.org • Phone Number: (703) 600-1117