{"id":1395,"date":"2023-06-26T19:23:00","date_gmt":"2023-06-26T19:23:00","guid":{"rendered":"https:\/\/bcchrtpgg.wpenginepowered.com\/?p=1395"},"modified":"2025-09-16T23:19:55","modified_gmt":"2025-09-16T23:19:55","slug":"eulogy-for-a-clinic","status":"publish","type":"post","link":"https:\/\/www.bcchr.ca\/tgrc\/2023\/06\/26\/eulogy-for-a-clinic\/","title":{"rendered":"Eulogy for a Clinic"},"content":{"rendered":"
\n\t
\n\t
\n\t

My professional life up till this point has been centered around a mission to bring genetic counselling to people who \u2014 like me \u2014 live with psychiatric conditions, and their families.<\/p>

This has been my mission for >20 years, since my family started asking me about whether psychiatric conditions were genetic and what this meant for us while I was doing my PhD on this topic. Realizing that it wasn\u2019t just my family that had these questions and that no-one was really addressing them is what drove me to train as a genetic counsellor. Once I completed my genetic counselling training in 2003, no one would hire me to provide genetic counselling for families with psychiatric conditions. Of course, psychiatric conditions have always been profoundly disenfranchised in terms of health services, but as well, there was no evidence that people with psychiatric conditions wanted genetic counselling, and no evidence that it could help. So, this drove me into research.<\/p>

I landed a research professorship and my team and I generated data showing that:<\/p>

    \n\tpeople with psychiatric conditions wanted access to genetic counselling<\/li>\n\n\tgenetic counselling helps people with psychiatric conditions<\/li>\n<\/ol>

    In 2012, on the strength of these data, we established the Adapt Clinic \u2014 the world\u2019s first specialist psychiatric genetic counselling clinic. It was all about helping people understand the factors that contribute to developing a psychiatric condition, and how to use this understanding to engage in self-management strategies to protect their mental health for the future. It was about helping people to make meaning, and understand that psychiatric illness is not your fault, and not your fate.<\/p>

    In 2023, after 11 years of helping patients, training students, generating research data about the impact of what we do, and providing a model for psychiatric genetic counselling services around the world, our service is being closed.<\/p>

    I\u2019ve fought this with everything I have because it feels so wrong. But I\u2019m so bone tired \u2026 and there\u2019s literally nothing more I can do. It\u2019s over.<\/p>

    No amount of data demonstrating the awesome outcomes that patients experience (increases in empowerment, changes in behavior to engage in self-management strategies to protect their mental health) after receiving our services has swayed the decision. So, this is a eulogy.<\/p>

    The webpage for the clinic has silently ceased to exist.<\/p>

    The reason given for the death of the Adapt Clinic? To redeploy the counsellors to provide service for general genetics patients because the waitlist there is so long. It\u2019s apparently that simple. And pointing out that this is classic disenfranchisement of people with psychiatric conditions \u2013 again, people like me \u2013 has made no impact. I may as well be speaking to a wall.<\/p>

    Now, as someone who has served as a leader myself in a publicly funded healthcare setting, I do of course understand that we are forced to make decisions about how to allocate scant resources. And sometimes people might not like the choices we make. I understand that. My objection is that the Adapt Clinic embodies (has embodied) all of the principles and values claimed to be held dear by the healthcare system that is closing it. That is what I find distressing.<\/p>

    Initially, when I saw the writing on the wall that the clinic would be closed, I was devastated- this was my life\u2019s work, I thought. And it\u2019s been for nothing, my internal voice said \u2026 I am a failure. I lost all energy to continue in my efforts to leave things better in the world than I had found them. Because, what is the point? I \u2014 and the counsellors within it \u2013 gave the Adapt Clinic everything we had, it was demonstrably successful, and yet it is still being closed \u2026 it felt like it was all for nothing.<\/p>

    But this narrative is wrong. I can see that I am not a failure, and that the clinic was not a failure. Instead, the clinic, and the counsellors within it, and the patients we serve, have all been failed by the system we are in.<\/p><\/div>\n<\/div><\/div>\n\n\n

    \n\t
    \n\t
    \n\t
    \n\t\t\t<\/figure>\n
    \n\t

    The Adapt Clinic was the world\u2019s first specialist psychiatric genetic counselling clinic. In 2023, after 11 years of helping patients, training students, generating research data about the impact of what we do, and providing a model for psychiatric genetic counselling services around the world, the clinic closed.<\/p><\/div>\n<\/div>\n<\/div><\/div>\n\n\n

    \n\t
    \n\t
    \n\t

    Our efforts were not for nothing. The Adapt Clinic has helped about 1,400 patients and trained over 50 students, some focused on clinical skills, some focused on research skills, and some both. We published about 20 papers that are out there in the world that explain the difference that psychiatric genetic counselling can make for people, and how to do it well. I know that we have inspired practicing genetic counsellors around the world as well as students\u2026we have inspired people to train in this discipline. I know this because people have been gracious enough to tell me about how our work has affected them.<\/p>

    Given all this, you have to ask, why is the clinic dead? I think there are two real answers to that. First, psychiatric conditions are still so stigmatized. People with mental illness \u2014 like me \u2014 have a long and awful history of being disenfranchised, and here we see it again: an evidence-based service for people with psychiatric conditions cut, despite data showing that it\u2019s needed and it helps. And yet it\u2019s cut so that we can prioritize providing services for people with non-psychiatric indications.<\/p>

    Second, the genetic counselling services we provide for people with psychiatric conditions typically don\u2019t involve genetic testing. And though the service helps people, the health system decision-makers don\u2019t value genetic counselling when there\u2019s no genetic testing being done. The psychotherapeutic work we do is not valued \u2026which is truly the hardest thing for me to swallow, because data show that it\u2019s exactly this that makes the difference even when genetic testing\u00a0is<\/em>\u00a0available. It\u2019s the counselling that helps people.<\/p>

    So, yes, this is a eulogy \u2014 a public expression of pain and grief and disillusionment about the death of a clinic whose establishment was the culmination of >10 years of my work, that we nurtured successfully for 11 years, and that brought purpose to my life and a way to channel my own experience of psychiatric illness to help others. It\u2019s so hard to build and create something new and innovative, and so very easy to destroy it. It does feel like a death.<\/p>

    My biggest fear is that others will stop trying to establish psychiatric genetic counselling clinics in other jurisdictions as a result of this. People \u2014 like me \u2014 who have psychiatric conditions deserve better than this. So please keep pushing. Others have taken up the mantle \u2014 there\u2019s a clinic in Cardiff, and Tennessee, and others (if you know of others, please tell me!) \u2026 I\u2019m rooting for all of you. Please let me know how I can help.<\/p>

    But I think this reflects broader issues too \u2014 I think as a profession, we have to answer some questions for ourselves. Are we happy with being reduced to roles as the purveyors of genetic testing? And only post-test counselling at that? This is the direction in which we are headed. Medical genetics departments with long and growing waitlists often respond by simply reducing the list of indications to make fewer people eligible to access genetics services. That\u2019s exactly what happened to the Adapt Clinic \u2014 the eligibility criteria for access to genetics services shrank to exclude our patients. What happens to these patients? It\u2019s not that they get service elsewhere \u2014 they don\u2019t. The people who make these decisions are deciding who gets care \u2014 deciding who matters. This is an issue that relates to equity and justice.<\/p>

    In writing this eulogy for the clinic that I created and loved, my purpose is to try to use its death for something positive. Given our increasing focus on the importance of EDI issues, I would like to suggest that this is an opportunity to question whether tertiary-care clinical genetics is the right location for genetic counsellors if we are to be able to provide just and equitable access to our services for people who need them. Situating genetic counselling services in alternative locations, such as primary care\/family practice, might be worth considering as a way to ensure our ability to practice to the top of our scope, to offer more than just genetic testing (like psychiatric genetic counselling), and to ensure more equitable access for patients.<\/p>

    I hope that the end of Adapt can be used as an impetus for the start of something new. If the Adapt Clinic has impacted you in some way, those of us who nurtured it would love to hear about it in the replies, or by message.<\/p>

    Some of my fave quotes from people who had psychiatric genetic counselling in the Adapt Clinic (from Semaka et al 2019):<\/p><\/div>\n<\/div><\/div>\n\n\n

    \n\t
    \n\t
    \n\t
    \n\t
    \n\t
    \n\t\t

    \n\t\t\t\u201cUntil genetic counseling, no one ever coherently explained to me why I have a mental illness. And I think that\u2019s a conversation that needs to be had because most people just think they\u2019re having a bad time of it or they just think that they just need to try harder.\u201d

    \u201cI felt in control, you know [psychiatric genetic counseling] made me feel more empowered than I did when I walked in and I think for me that\u2019s a big deal\u2026 I just felt after the appointment I had more tools to control my life.\u201d

    \u201c[Psychiatric genetic counseling] gets rid of some of the shame\u2026. with mental illness, it\u2019s so hard to know what you did wrong but really you didn\u2019t do anything wrong and [psychiatric genetic counseling] just explains that to you\u2026 so you\u2019re able to look at this and think, \u2018OK, this isn\u2019t my fault.\u2019\u201d\t\t<\/p>\n\t<\/blockquote>\n\t

    \n\t\t\t<\/figcaption>\n<\/figure><\/div>\n<\/div>\n<\/div><\/div>\n\n\n
    \n\t
    \n\t
    \n\t

    Credit: Jehannine Austin for\u00a0The DNA Exchange<\/a><\/p><\/div>\n<\/div><\/div>\n","protected":false},"excerpt":{"rendered":"

    My professional life up till this point has been centered around a mission to bring genetic counselling to people who \u2014 like me \u2014 live with psychiatric conditions, and their families.<\/p>\n","protected":false},"author":2,"featured_media":1478,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_lmt_disableupdate":"","_lmt_disable":"","inline_featured_image":false,"footnotes":"","fndry_alternate_title":""},"categories":[15],"tags":[21,22,23],"class_list":["post-1395","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-mental-health","tag-psychatric-condition","tag-psychiatric-genetic-counselling"],"modified_by":"Andrea Sakamoto","_links":{"self":[{"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/posts\/1395","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/comments?post=1395"}],"version-history":[{"count":1,"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/posts\/1395\/revisions"}],"predecessor-version":[{"id":2671,"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/posts\/1395\/revisions\/2671"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/media\/1478"}],"wp:attachment":[{"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/media?parent=1395"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/categories?post=1395"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.bcchr.ca\/tgrc\/wp-json\/wp\/v2\/tags?post=1395"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}