Finding Our Way Together: 2019 Massachusetts National Alliance on Mental Illness Convention

Attending the Massachusetts National Alliance on Mental Illness Conference in Leominster, MA was both refreshing and eye-opening. It was exciting to be in a space filled with so much energy and a sense of community, and to be able to meet so many new people and diverse organizations, including clinics with new treatment models, community mental health centers, crisis hotlines, and non-profit advocacy workgroups. I was able to interact with an amazing group of fellow advocates, clinicians, artists, and policymakers passionate about a cause often under-discussed in healthcare and society. I learned from individuals who freely shared their personal mental health journeys, and from family members whose loved ones were at different points in their care. It was interesting to see just how many caregiver and advocate presenters had lived experiences themselves, and were now empowering others to also break barriers set for those with mental illnesses.

The Advocacy Workgroup for the Engage Initiative presented an exhibit table educating individuals about the Cancer and Mental Health Collaborative and the Bridge Trial, as well as inviting participants to take a pledge ensuring mental health will never be a barrier to cancer care. We had such a diverse group of individuals stop by and many were interested to learn more, signing up for our newsletter and picking up Engage bookmarks, flyers, and information that we had at our table. Many individuals were taken aback by our statistics showing the current disparities in cancer care for people with mental illness— specifically, the 30-year mortality gap between the two populations. After hearing about our program, individuals from home health visit organizations, community support networks, and researchers, were excited to connect with us and asked for ways they could share our work with patients and families who may also be interested in getting involved.

Many workshops were offered, discussing themes of housing access, safe spaces, substance use, and coping with trauma. I attended the workshop “Living with Voice: the Hearing Voices Network experiences approach to unique experiences”, held by two members of the Hearing Voices Network USA. It was an approach to hearing voices that I had not heard about before and it was an interesting one— the voices were not the problem, but rather the reaction to the voices heard. The presenters shared their own experiences with voices and informed us that 70% of voice-hearers associated the onset of voices with childhood trauma and that the voices often had many “good” elements: They were a friend and supporter at times of distress, and often helped with healing post-trauma. The Network provided an alternative approach to treatment plans that focused on getting rid of voices, one that focused on acknowledging, managing, and forming positive relationships with voices. The Network also reminded us that many cultures approached voice-hearers differently, referring to shamanism and ritualistic voice hearers in many cultures’ traditions. The workshop was interesting as it was a patient-driven initiative advocating for policy change by challenging the current health system. The organization was also an example of the improvements in health and well-being that were made when focusing on what people could do, instead of the barriers or limitations.

Kelly Irwin, and Amy Corveleyn, introduced by Ruthanne Switzer from NAMI Mass, were invited to speak during the lunchtime program. Starting with a short video that summarized the current need for the intervention, Dr. Irwin introduced the Engage Initiative and the Bridge trial—a program dedicated to meeting people where they are and fighting the inequity in care that affect the most vulnerable populations. The talk ended with Dr. Irwin inviting everyone in the audience to take the pledge: “I pledge to ensure mental illness is never a barrier to cancer care”.

The NAMI Mass convention was an excellent opportunity for me to reflect on my reasons for joining the Engage team, and to hear firsthand the challenges and unmet needs of individuals with mental illness. I look forward to continuing my work towards bridging the gap and am excited for future opportunities to engage with others committed to ending the inequity.

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