August 20, 2020
I’m Michelle Wagner and I’m with Nami, New Hampshire, working on the first episode, Psychosis Early Serious Mental Illness Initiative.
The initiative is coordinated by Dartmouth, Hitchcock and NAMI, New Hampshire with major support from SAMSA, the Substance Abuse and Mental Health Services Administration along with the Bureau of Mental Health Services within DHHS.
Thank you for joining us for our third webinar in this four-part series.
The topic today is the journey to use meds optimally to support recovery.
Doctor Patricia Deegan is our presenter today.
This is a one-hour session and is being recorded.
There are no professional education units available, however we are happy to provide you with a certificate of attendance.
An E-mail will be sent to all registered with information on obtaining that certificate, along with a link to the recording and slides, which will be found on the project’s website onwardnh.org.
Included in that E-mail will also be the link for Doctor Deegan’s website.
Because this is a Zoom webinar, your video camera and audio are turned off.
This platform does not have a chat box feature.
Instead, we ask that you enter questions for Doctor Deegan in the Q&A section.
Carrie Sarcione, research Project Manager from Dartmouth Hitchcock will be more monitoring the Q&A and she will get to as many of those questions as we can.
Also here with us today are Dr. Kelly Ashbrenner and Dr.
Dr. Ashbrenner is the director of research at New Hampshire Hospital, associate professor of psychiatry at the Geisel School of Medicine at Dartmouth College, and a senior scientist with Dartmouth Hitchcock.
Doctor Tory is professor and interim chair of psychiatry at Dartmouth’s Geisel School of Medicine and Dartmouth Hitchcock.
Doctor Tory, thanks very much.
It’s my great honor and pleasure to introduce Pat Deegan.
It is incredibly smart person, a very an important thought leader for psychiatry for over 30 years and she is a disruptive innovator.
That’s a great description because she creatively comes up with new ways to provide care that really safeguard human dignity and bring individual voice and choice to the center of patient care.
She’s changed the flow of how care happens to support recovery and empowerment.
She’s also created programming that people may have heard of.
Common Ground and she has a wonderful resource in the recovery library and has come up with other very creative ideas including hearing distressing voices, simulation.
I’ve. She’s helped me teach residents and medical students and I’ve had the great pleasure to work with her for many years, and I will get out of her way so that we can all hear her speak.
Doctor Deegan, thanks so much, Will.
I’m going to share my screen now.
And yeah, so hi, everybody.
It’s a real honor to be here today and to have this opportunity to talk with you about, I think, a very important subject when it comes to helping to provide services to young people who are experiencing the first episodes of psychosis.
And my understanding is that New Hampshire is on the way to developing a new team or multiple teams and that’s an exciting thing to be doing.
I work closely with the on-track program in New York.
So on that note, I want to introduce you to this work that I’m doing now called the Journey to use meds optimally to support recovery.
But I’m going to start where I always begin and let you know that I am a person, not an illness.
And this is important because it’s where all of the work that we do begins.
And the way I see it, I am not, nor have I ever been, a schizophrenic.
Your loved ones are not psychotics.
We are people.
We are not disorders.
And precisely because we are fully human, there is hope.
Our shared humanity, both as professionals and people coming for services and as family members are shared.
Humanity is the common ground from which all of our work begins.
It is possible for young folks to live our lives and not our diagnosis because we are more than the diagnosis.
And if we reduce a person to being an illness, to being a schizophrenic or a bipolar, then there is no one left to do the important work of recovery.
Illnesses do not recover.
So the very first task of teams and others working with young folks diagnosed with early psychosis is to discover the person who is our recovery partner.
I think of it this way.
I think of it by visualizing a flower before diagnosis.
I knew myself as a regular old pat, right?
I was just pat.
And each petal on the flower represents an aspect of what made me unique and an individual there at the 17 years old and a senior in high school.
And importantly, that empty petal that you see in the diagram represents my hopes and my dreams and my aspirations for my 17 year old self.
After diagnosis, it can feel like the flower or representing my life has blasted apart.
The diagnosis threatened to define me and throws my understanding of who I am into chaos.
That’s the only way to say it.
The squiggly lines that you see in this representation stand for kind of the hopelessness, the stigma and the devaluation of those of us diagnosed with mental illness in our culture.
And I want you to remember that this stigma can also occur in mental health settings as well, and that it’s our job to make sure that we root this out.
And most importantly, when you look at this and think of the previous flower image, notice how the empty petal is missing.
That empty petal that represents our future hopes, dreams and aspirations is no longer here in this diagram, right?
And this image to me represents a state of despair.
And I define despair as a life that is being lived with no future possibilities.
And in fact, at 17 newly diagnosed with schizophrenia, I was told by my care team, Miss Deegan, you have a disorder that’s a lot like diabetes.
You need to stay on high dose antipsychotic medications for the rest of your life.
You may not.
You have to avoid stress and take your meds and anything about love, life, romance, school, or any of that.
And this was a message that I call a prognosis of doom.
The way I see it today is that, and the message that we want to convey to the people that we’ll be working with is represented here, that you are a person, not an illness.
Yeah, today you may have some vulnerabilities, perhaps, as I call them, that weren’t here before, but these vulnerabilities do not define you.
The most important thing I think, for teams and family and friends to do is to let the young person know that there is hope.
There’s still that empty pedal.
There is hope precisely because our loved ones are a person, not a schizophrenic.
So I encourage us to say to young folks, those beautiful parts of you that are represented by the flower petals are still there.
They’re still you.
They’re still here with you, even after diagnosis.
And that’s the message that we want to give to people.
You are not an illness.
You are the one who will need to be strong enough to make the journey into the life that you want for yourself.
And you’re going to have to mobilize and depend on all of the amazing parts of yourself to make your recovery journey.
And in fact, your hopes and dreams and aspirations and your goals for your life, your goals for your these are the stars by which we navigate your journey of recovery.
And we can also let them know that their professional team, that their family and their friends are going to be here to support you every step of the way.
This is the very first ask of all coordinated specialty care teams now within that journey of recovery.
Clearly, and no one would argue this, that medications can be a helpful tool in the recovery process.
There is no doubt about that for many of us.
But what’s important to understand is that using medicine optimally to support recovery is much, much more than learning to swallow pills on schedule.
Learning to use meds on the journey of recovery is in fact a journey, and it happens over time.
I am positing that there are 8 common challenges on the journey to use meds optimally to support recovery.
And most importantly, we can, as family members, as professionals, as friends, we can support people, we can engage with people and help them navigate these challenges.
So today what I’m going to do is to give you a high level overview of these eight challenges and then we’re going to take a deeper dive into two of them because we simply don’t have the time here today to do them all.
So let’s just do the high level overview right now.
The first or usually the first challenge in taking in this journey is what I call taking meds passively.
The passivity challenge.
And most people start their journey here and that in this journey most people you know come to the attention of mental health services in a period of need and a period of of crisis perhaps.
And very often we find ourselves in settings where families are giving us prescribed meds or where staff are giving us prescribed meds.
And the challenge then is to make that passage from passively receiving meds to actively using them as one tool, among other tools in recovery.
So so the passivity challenge is all about how do I get activated to use my psychiatric medicine but also my personal medicines?
The things that I can do to be well for most of us, finding the right balance between the medication I take and the things I do, the selfcare I practice is the pathway into recovery.
Laying around waiting for meds to cure us usually doesn’t work.
Another challenge on the journey to use meds optimally is answering the question Are these meds helpful to me at this time in my life?
Are these meds helpful to me?
And it seems so obvious, but it is not obvious when you’re on the end of using medication what meds working really means.
If I ruled the world and I was in charge, we would at every single psychiatric care appointment where either a new medication or a new dosage is made, or a new combination is made, we would define ahead of time how will we know if these meds are helping you?
That’s a challenge.
Now of course this is the challenge when people are choosing to use drugs or alcohol instead of or in addition to their prescribed medications and and especially with the emergence and availability of cannabis and etcetera, etcetera, it just becomes a very, very prevalent challenge.
And it’s a tough one, there’s, there’s no doubt about it.
But still there’s plenty of hope for people being able to move through that challenge exploration.
This is a really common challenge on the journey to use meds because this is all about exploring the possibility of discontinuing medications or reducing medications, exploring a complimentary yoga or your Vedic practices, vegan diets, nutraceuticals, I mean, you name it, the doctor.
Google’s got it.
And and more than ever young people are engaging with others via social media, etcetera, in discovering new ways to perhaps help themselves.
And this is definitely a big challenge.
Another element of this challenge has to do with the with cultural and traditional healing methods.
You know, how about a would a sweat lodge and medicine circle work for me better than, you know, clozapine.
You know just and and the thing about the exploration challenges and this approach that I’m suggesting is that that we engage with people in a really respectful way about these important and that we questions and that we engage with them upstream and anticipate that pretty much everybody including those of us on this call are going to explore what else might help if we have a sinus infection besides a prescribed for instance antibiotic.
So it’s very common.
Another one is redefining self and we’re going to take a deep dive into this one because it’s particularly relevant for young people experiencing the first episode psychosis.
And and this is all about finding my, about saying who am I now that I use meds.
But we’re going to hear more about this one in a moment so I won’t say too much.
And then of course there’s the motivation challenge.
What is my unique motivation for using meds?
Not not the judge’s reason.
Not my mother’s reason.
What’s my reason for using meds?
What’s my motivation?
And we’re going to take a deeper dive into motivation too.
Another challenge that people face is the Med Fatigue challenge, and this challenge is quite prevalent in my opinion.
And what this is about is when a person has been on a number of medication trials over time and has been on so many Med trials and has had a suboptimal response to those trials can be like being on a roller coaster ride going trying.
You get your hopes up.
It takes a lot of courage to try a new Med.
You come crash and down and you get weary and you get fatigued and then you forget how many different meds you’ve got.
You can’t even name them anymore.
And usually a person kind of lapses into a fear of speaking up about meds for fear that that I’ll be given even more pills, right?
And of course that leads to very often a person feeling extremely over medicated and sort of living a very suppressed over medicated life.
And it’s very, very sad when someone kind of is, is is in full medication fatigue.
And so we can support people through that challenge too.
And then finally the final challenge is what I call the trade off challenge.
And the Trade Off Challenge really gets that, helping supporting people in thinking through the pros and the cons, The Wanted effects and the unwanted effects of a medication.
And you know, in addition to side effects and unwanted effects, another dimension of the Trade Off Challenge has to do with the various risks and benefits associated with using a Med.
You know, in in general, generally speaking, psych meds can be a big help, but there are also associated risks as we know.
And it is not a crazy thing to wonder, you know, okay, I get that, you know, you know, using the Abilify for, you know, psychosis could could be helpful to me.
But at the same time of course you know, a 60 pound weight gain on Abilify is a threat to my health as well.
Course shared decision making comes in there.
In any case.
What happens then is basically these these challenges.
Importantly, they don’t emerge in a linear fashion and not everyone is going to experience all of these challenges and sometimes people experience, for instance, the exploration challenge, the trade off challenge more than once, right.
So you can experience these challenges at different points in the care continuum, in the care process.
19:29 And and importantly, just remember to that sometimes two or three challenges can overlap at the same time.
For instance, if I’m experiencing severe side effects in the trade off challenge, that’s going to affect my motivation to use this medicine.
Perhaps you know, so they can be that overlap.
I find myself less motivated to take a medicine that is causing me side effects.
OK, So what is what is what?
What do I mean by optimal, optimal use?
What is optimal use?
Well, it’s this.
It’s basically a regular day.
It looks like a regular day, like this image of a couple walking in the park.
Optimal use of medication means finding that really, really sweet spot, right?
Where using meds that I use to help to manage mental health challenges fades into the background and living my life takes center stage.
At least on most days.
That’s how I define optimal use of medication.
I’m not in there struggling day in and day out with side effects or struggling with this or, you know, or trying to figure out if I really want to do this, that stuff.
I’ve I’ve, I’ve been through those challenges and at least for now, resolve them and the challenges fade into the background and I’m living life.
That’s optimal use of medicine.
Now, mind you, it does not mean that I am completely necessarily symptom free.
That’s really important, right?
It means that what I am doing probably is using the fewest number of meds at the lowest effective dose, right?
The fewest number of meds at the lowest effective dose.
And one of the important things to know about recovery is that we can go on and live great lives, wonderful lives, and still struggle with symptoms at certain times, right?
It just kind of becomes who we are.
It’s you just figure out how to how to live right and so complete symptom abatement is not always achievable in order to be able to be on a sufficient dose so that we’re not feeling over medicated by it, right.
So sometimes it means living with some symptoms and that’s not the end of the world you can learn to manage.
It also means you have a personal reason for using meds.
So I know why I take these things that we’re using the meds.
We’re not passively just taking them, and we are using a whole range of other tools and supports in our recovery.
It means that the optimal use means that the tradeoffs are livable.
It means that I experience the medicine is helpful.
It means that my sense of self fits with the idea that I use meds daily or I go in for a monthly shot or whatever.
And I I’m hoping that you see from from what the picture that I’m painting for you here, that the construct, the construct of compliance and noncompliance simply does not begin to capture the complexity and the nuance of this journey to use medications optimally.
It simply doesn’t work, and so it’s a binary construct.
It’s like a light switch.
You’re either compliant or non-compliant.
The light is on, the light is off, right?
That doesn’t begin to do justice to what the lived experience of using meds is really all about.
So on that note, let me jump in and I quickly want to run through in some depth two of these challenges.
The first one is redefining self-right now.
Of course, there is a big difference between, for instance, using medication to relieve a headache, right?
And using psych meds over time.
Time limited use of meds like an aspirin for a headache usually doesn’t challenge our sense of who we are, our sense of self.
But using psychiatric meds over a longer period of time challenges how we know ourselves, including, and this is very important, including our sense of being at home in our body, right?
And I call this sense of being at home in our body our sense of our embodied self, our embodied self, And using psych meds in addition can challenge not just our sense of self, including the embodied self, but also our beliefs about medicine.
And so this redefining self-challenge is all about grappling with the question, who am I now that I use psych meds?
And not everybody experiences this challenge, but I think many, many people do.
And this challenge can pop up at any time in the course of treatment.
And you can imagine how important this is for adolescents and young adults who are experiencing a first episode of psychosis, who are still coming into their identity, into their embodied sexual self, into their grown upness, if you will, into their freedom, I mean.
And And then when meds begin to alter that sense of self, this is a very, very critical challenge to understand for young folks in particular, for all people, but very much for young people.
So what does it sound like if someone is experiencing this?
Well, here’s the kind of things people say.
You are medicating me, not the disorder.
I don’t feel like myself on this medicine.
I’m not crazy, so I don’t need meds.
Medicine’s A crutch.
Mental illness is a devil’s disease, and I just need to pray more.
My sponsor says I’m not sober if I take this medicine, so that’s what it sounds like.
Now what do we look for?
What we look for is a person who suddenly and seemingly without much warning, quits A beloved activity.
So let’s say someone really enjoys playing their guitar and then they stop.
They just quit.
I give up.
I’m done, right?
Cultural Beliefs that differ from the biopsychosocial model.
And also what we need to look at is people who would affirm that the meds have changed me in ways that I don’t like.
We’re looking for behavior.
We’re looking for signs that this may have occurred.
Now importantly, I want to share what it’s like to to experience this from the first person’s experience, from from, from the lived experience as I call it, what it’s like to be in the shoes of someone experiencing this.
And so and so from the perspective of lived experience, I think that this one dimension of this redefining self-challenge involves what I call discovering my new normal right prior to diagnosis.
We kind of just know ourselves.
We know how our body is.
We know how we are.
I’m a night owl.
I’m a level we just kind of that’s called the normal me.
I know myself as kind of the the the normal me and then we experienced this other state that gets diagnosed as psychosis and that’s definitely not normal me, right.
That’s that’s a whole other thing into itself.
So, you know and so and then we offer people and antipsychotic medication or medications and what we find is a, is a, is 1/3 variation begins to arise.
Now a lot of times people would expect that when I give you an antipsychotic medication, Pat, when you’re being psychotic that then you have this antipsychotic medication that you go back to normal.
But I really don’t think that that’s accurate.
I really don’t.
I think what happens is that a third state is established, right?
And that third state is what I call, me on medicine.
Me on medicine is a whole new thing for most of us, I would argue, because there are differences between the normal me prior to psychosis and the me on medicine, right?
So I begin to experience myself in new ways.
And honestly, some of those differences are very welcome.
For instance, I might get along better with my classmates and be more trusting of my friends and family.
But on the other hand, some of the differences of me on medicine I I I are not welcomed.
I’m not excited about them.
For instance, I might enjoy the creative process as an artist, but I may feel duller.
Perhaps I feel emotionally numb on meds compared to normal me.
I might process information more slowly.
I might move more slowly or I not. I might need more sleep than normal me used to need.
I might have a different taste in my mouth.
There’s a certain kind of bad breath that goes sometimes with using an antipsychotic.
There’s that saliva that can dry and congeal in the corner of our mouths, right, so that other people can see what is that stuff in the corner of your mouth, you know, and and that and so in other words, it’s this changed me, this changed bodies, letting others know that something has changed for me.
Maybe I enjoy sex with my partner, but now I’m having unwanted dampening of my libido and therefore that’s new.
How do I negotiate, navigate that.
And from the perspective of the lived experience, what I’m talking about are not side effects, right?
These are not side of just side effects.
From the vantage point of the lived experience.
These are examples of how our embodied self transforms when using meds.
And so the challenge is to come to terms with the new normal of me on medicine, at least for now.
And that’s one of the most important frames we can use when working with people.
It’s doesn’t have to be forever, at least for now, right?
Another thing that can be challenged and changed are our personal beliefs, the story of self.
Just the fact that I use psych meds can change and and and me and challenge, for instance, my cultural beliefs.
I might think that psychiatric meds are for crazy people and the very act of, you know, taking medicine disrupts the story that I tell myself.
Or maybe it puts me out of sync with my culture.
I’m not crazy.
I don’t need meds.
So what the person is trying to do is they’re trying to bring their sense of self into confluence with them into and sync that sense of self up with cultural beliefs, sync it up with other beliefs like only crazy people use these medicines.
So these are important dimensions of this redefining self-challenge.
So how do we support people through them, right?
Well, supporting the journey.
We need to be plugged in; we need to know about it.
We need to know how to listen to it.
We need to know what we might observe.
And then we need to have empathy, deep empathy.
And the way we express that empathy to a person we’re working with, who’s experiencing the redefining self-challenge is to invite people to talk about it, to engage with them, to meet them where they’re at on this journey.
And I love these questions.
These are so powerful.
Are you concerned about how meds have changed you?
Are there ways the medicine has made things worse for you?
And then there are ways the medicine has made things worse for you rather than better?
That’s for someone who’s already using it.
But for people who are coming in new to our programs, for people who are just beginning to consider starting, imagine how powerful it would be for the team to say, well, what are your hopes about what meds will do for you, and what are your fears about how meds might change us?
We could engage with people way upstream on this challenge just as they’re coming into services.
If they’ve not used meds before, how, how awesome is that?
So I put together a worksheet that’s called Psychiatric Medicine and me, I just think this is the coolest thing now.
You know, I don’t love like worksheets, you know, it’s not like I carry them in my back pocket.
What I love about worksheets though, is that they they present the heuristic.
They present a way of engaging with people around who are experiencing this Med fatigue challenge.
And eventually perhaps you’ll you’ll, you know, internalize this method.
But until then, and you say you can just do it right out of your head.
But until then, we use the worksheet and we don’t throw it at people and say go do this right.
It’s the beauty of a worksheet is in the conversation it engenders, and it helps to promote, right.
And so in the beginning of the worksheet, what we’re doing is we’re inviting the person to say what it is about them that makes them unique and we’re inviting them, hey, add a song lyric or a favorite movie or another piece of art that will help the team know you as a unique individual, We want to know you what makes you special.
And then in the bottom part of the worksheet, I can say what were my hopes about what meds could do for me and what are my concerns about how meds have changed me or might changed me, and a place to put in your own words.
And then there’s a plan for sharing it with the team.
There’s also a second strategy.
I think that’s really a a good one.
And this has to do with the person who has certain beliefs, whether they be cultural or just beliefs that that that clash with the idea of taking psychiatric meds.
Now importantly, there’s a distinction between beliefs and values.
Beliefs are assumptions that we have.
People with mental illness are crazy and who use meds are crazy, and I’m not crazy, so I don’t use meds.
Values, on the other hand, are the principles that we try to live our lives by things like driving safely, you know, working to support myself, being there for my friends.
These are common values.
And what I find, generally speaking is if we if we engage with people around their beliefs, we’re kind of doomed.
Beliefs are malleable.
They can change or we can hang on to them steadfastly, right?
It just becomes, I don’t know, like a very counterproductive argument.
And then when as clinicians, when we go to that place where we say no, no, he, he just lacks insight into the fact that he’s ill.
I mean, I think it’s like game over then, because now we’re in a power struggle, right?
I don’t think this gets us anywhere and should be avoided in my opinion.
Does this person lack insight, or do they see things differently than I do is how I think about it.
In any case, what can be very valuable is helping people focus on their values rather than their beliefs.
So let me tell tell you a story.
I I I was working with a peer who had a history of abruptly going off meds, which seemed to be helpful, at least to the team.
The team thought the meds were helpful to him and he believed he was not mentally ill and therefore he didn’t need meds.
And one time while not taking his meds, he got verbally aggressive with a check out cashier and another cashier called security and eventually he was involuntarily committed to a hospital.
And while still there, my Peter and I talked not about his beliefs but about the values that we live by.
And it turned out that he really valued being a kind person and being a law-abiding citizen.
And his big dream, you know, those aspirations and dreams that guided our journey was, was that he wanted to be a first responder in his community.
And we compared his belief that he’s not crazy and doesn’t need medicine with his value of being a kind and law-abiding citizen.
His belief and his values clashed in the real world when he was having that outburst and frightened the cashier.
Well, our conversation about values rather than beliefs helped my peer eventually reframe how he thought about meds.
And it was a very powerful transformation from him and.
And so I put together a worksheet that again sets up a way to engage people around this kind of conversation.
And in it there are there’s a list of common beliefs about psych meds and a place to put in the values that I live by.
And then it invites the person to think through with us about how to harmonize, how to find harmony between my beliefs and my values.
OK, second challenge.
We’re going to take a quick dive into discovering my motivation.
So here’s what it sounds like.
I hate taking these meds.
Staff make me take it.
The judge says I must take it As soon as I’m off this court order, blah blah blah, I’ll get thrown out of my housing if I don’t get the shot.
My dad takes the car keys from me if he sees I’m not taking the meds, right.
So this is what it sounds like kind of in vivo, right?
What can we do, what we can do when we hear that someone is experiencing the motivation challenge and this this challenge tends to come and go a fair amount, especially as things are moving in my life and things are changing.
What to look for?
Well, we can look for a history of corridor treatments and voluntary treatment.
A history of kind of abruptly coming off meds when unsupervised and a general sense that the person really doesn’t seem to to have any real buy in to using medications and and and and teams need to be really careful with this because it’s like oh, if if if dad’s taking away car keys is working for that young person and they’re taking the meds, okay, we got compliance and we move ahead, right?
No, we need to stop.
The person has no buy in, the person has no buy in.
How can we get engaging with them around that?
That’s where I want to see us go.
Not like, oh goodness we’ve got and God knows the teams have so much going on.
But we can’t just let this slide because it will come back and bite this young person down the road when eventually they do leave home, right?
So let me just say that to support people here, there is this key question that I think is important and that we can can use.
Is there anything that Blank is keeping you from doing that you really wish you could do?
And Sean Christopher Shea, who I believe at some one point was in in New Hampshire.
I don’t know if he has any more talks about this, but I also had stumbled into it in my own recovery too.
And so we can plug into this this blank here.
Is there anything that psychosis is keeping you from doing?
But don’t go there if the person says I’m not psychotic.
So if the person you know is invested in maybe having some more sleep is there anything that not sleeping well is keeping you from doing that you really wish you could do?
Is there anything that the voices are keeping you from doing that you really wish you could do?
I think you get the gist of it.
And of course there’s a worksheet for that, right?
Again, we’re operationalizing this.
We need to be thinking about how do we actually use these resources?
By the way, I am sharing these with you so you will have copies of these worksheets to begin using and what we do is it helps.
Then the person discovered their personal motivator.
Because I say, is there anything that Blank is keeping you from doing that you really wish you could do?
And I answer well, in the past I was able to work and make money, but now my depression interferes with that so that working and making money becomes my personal motivator.
That’s what’s motivating me, right?
And having discovered my personal motivator by using the key question right, I can get a list of my personal motivators and then I can make a plan for staying motivated.
So for instance, for me personally, and this was a long time ago, but one of my what I figured out to do for myself, because I I was never a person who liked taking meds.
It was hard for me.
What I did was I actually wanted to go to school.
I wanted to finish my class, work with a passing grade.
So I put a picture of a hospital and then I put a picture of my school.
And I would say to myself every morning and every evening when I took the medicine, I would say this one is for staying out of the hospital and finishing school, right.
Later on in my life when I became a mom, I would say this one is so I can, I can be a good mom to shine in.
And I’ll tell you; it was very powerful in terms of being able to keep me motivated.
The one final thing I want to leave you with before we open it up to Q&A is I want us to prescribe hope for recovery.
Never, ever, ever tell folks that they will have to stay on medications for the rest of their lives.
I think we don’t know that some people do not have to use meds for the rest of their lives and that it can be demoralizing to hear that, especially when you’re really young.
Instead, what I think is we prescribe hope for recovery, and we talk about the life I want and we stay pragmatic and we stay here and now.
We stay here and now.
How are things going now?
I noticed you stayed out of the hospital for six months.
That’s pretty darn good.
Are you enjoying being out?
So for right now, it’s working.
And that’s about all we kind of need to know for here in the and in the in in the short-term future.
And the question about, you know, you’ll have to take them for the rest of your life, You know, we don’t know.
We just don’t know.
So anyway, that’s what I wanted to share with you in our short time together.
And I also wanted to say that if in fact you want to learn more about this new approach of the journey to use meds optimally to support recovery, I’m going to be building it out as a series of videos and an online eLearning course as well as a a workbook and and and have a group facilitator guide for it and all that good stuff.
Because I think it’s much needed in our field.
And I would invite you to sign up for for my newsletter.
You’ll have a link I guess in an e-mail after this webinar, and I’d be happy to get you information as these things become available.
So thank you.
Thank you, Pat
And I think Kerry was going to assist with questions.
Yeah, thank you, Michelle.
So Pat, our first question is for a disability insurance carrier, what questions will be best asked that could help encourage a client to engage in treatment and medication fall through recommended by treating providers.
I I need you to repeat it one more time.
So for a disability insurance carrier, what questions would be best asked that could help encourage a client to engage in treatment and medication follow through recommended by treating providers?
I’m not an expert in that area at all.
I’m sorry I can’t help you with that.
And so our next question is, are you where many places in Massachusetts that work the way that you do?
You know, there’s a saying that goes there, you know, a profit in their own backyard kind of thing, you know, and it’s like, yeah, I don’t get asked to speak too often in Massachusetts, but I speak all over the world, right, All over the United States and everywhere.
So, no, there’s there’s not a place in Massachusetts that that does this.
But I’d be happy to get him started given the chance.
And if anybody else has any other questions.
I just wanted to say West Central Behavioral Health here in Lebanon uses Pat Deakin’s Common Ground program in their process and maybe you could just say a word or two about how that works.
So I am aware that in the public sector, mental health, a lot of the times we only get 15, maybe 20 minutes with our psychiatric care provider and that can be a really short amount of time in which to make him very important decisions about medications.
And so I said to myself, what if we set up an area and get rid of the waiting room?
Who wants to wait?
Let’s get prepared to participate in a meeting with our doctor.
And so we hire peer specialists who come in and work in what we call a peer run decision support center inside the mental health system.
So I check in with reception and then I go into a room that’s filled with peer specialists and computers, and the computers have access to my common ground software.
And so what happens is, is that I can work with a peer specialist and prepare a health report for my doctor.
I could also find out information about side effects or other other things in the recovery library.
I can use the computer to set up a health report and tell my doctor how I’ve been doing since the last meeting.
And that report goes into the doctor, but also goes to everyone else on my care team, my therapist, my peer specialist, my employment specialist, etcetera.
And then my doctor and I arrive at a shared decision about what I am going to do between now and my next appointment to support my own recovery.
And sure, I might have in there that I’m going to use a medication, but I’m also going to might have in there that I’m also going to increase my exercise by getting off the bus one stop early so maybe I can have better sleep at night.
So it’s a very recovery-oriented program that tries to operationalize some of the things we’re talking about here.
And yeah, it’s in.
And we have some ACT teams in Massachusetts that that use the software, too.
Actually, we have one country.
And we did get one more question.
How can I, as mom hope for my daughter now offer medications other than to encourage her to seek care?
So you’re breaking up a little bit for me, Carrie.
I have trouble getting the question.
How about if I read it?
How can I, as a mom?
How can I, as a mom, get help for my daughter now off her medications, other than to encourage her to seek care?
Well, is she in any kind of care?
I mean, is she seeing a therapist?
Is she working with anybody, a peer, specialist, anything like that?
We don’t have those details.
That was the extent of the question.
Well, I I my hope would be that she’s connected with supporters in her life.
I mean, going through this completely alone with no supports is really, really almost tough, right?
So, you know, I just wonder, you know, as a mom, is it possible to engage with her, ask her how things are going?
I wonder about what?
What it was about meds that she found that she didn’t want to have in her life anymore.
But how’s she doing since going off, you know.
And sometimes people do okay, a lot of times they don’t.
I I know when I went off abruptly with no support, I was back in the hospital within a month or two.
It’s pretty bad.
But my big take home lesson from that and I’ll just share it with you, was its wicked easy.
As we say in Massachusetts it’s wicked easy to go off meds.
The hard part is going off meds and staying well, that’s the trick.
That’s the trick, right?
So I I share that process for.
So Pat, I have one other thing.
I I love your recovery library resource and wonder and that’s available to people for a small subscription and maybe you could tell people about that too.
So so we have something called Recovery library.com.
You can go check it out.
Recovery library.com and Recovery library.com contains A tremendous backlog of my work and my team’s work for like the last 20-25 years.
And in the library, many of the worksheets and tools that we’re discussing today, I have them.
We’ve got hundreds of new short videos of young people with, you know, the first episode of psychosis and other psych disorders who are talking about recovery.
That recovery is real.
It’s just a tremendous amount of media, a lot, a lot, a lot of videos because that’s what people like these days and they’re very short and and cool and and, you know, on all kinds of topics.
And then we offer an Academy which is an eLearning of course, right.
And then the Academy helps people plug in and more effectively use all the resources in the library.
So if you’re interested in this common ground program, the common ground approach, they have this thing called Academy plus library, mental health centers, big insurance companies.
They they they buy a subscription and make it available to everyone like on track.
New York for instance has all of the teams and all of the family members on the teams can can under their end under RFMH’s enterprise deal with us can can access recovery library at any time.
So please check it out.
We do have another question.
Might be our last one.
Lived experience includes the episode of disordered thinking and the distorted meanings and thoughts that persist even after the episode has been managed.
Do you do you debrief episodes with patients?
Oh gosh, yeah.
And you keep debriefing them well into you to your life?
I’m old now and goodness, I’m still trying to get my head around some of the things because not all of what happens is awful, really, to be honest with you.
I think for many of us there are can be profound, profound teachings like in the recovery library I have this beautiful video.
I call it the Flyer of the Kite And during one of my worst periods of psychosis where I was like really having a rough time, as in the hospital and a voice came to me amidst all the other awful ones that was very steady and beautiful.
And it said to me, you’re the flyer of the kite and it just attention, attention and I and over time, I just began to understand that if I identified as being the kite, I was just whipping around and all this fear and everything, right.
But I’m, I’m not the kite.
I’m the flyer of the kite, right.
I’m inside here.
I can hang on steady, steady and watch the kite.
And I continue to unpack that in my life, even to this day.
I mean that’s and so sometimes the experience is a very profound they’re they’re, they’re gifts in a way, and sometimes they’re awful and it does take time to sort it out.
Maybe a quick response to this one pad and then we’ll say goodbye.
How a family can stay plugged in and empathetic while our young person is not there yet.
So I’m not quite nowhere there is because they are there.
And I absolutely, with no exception, believe that the young person you love is there.
And I really meant it when I say that’s where everything begins.
And it’s not like saying, hey, we you know, you got to go back to the carefree when you were because sometimes recovery is not about going back to who I once was.
It’s about being transformed into something new.
That was certainly the case for me.
And that’s okay.
It’s a very can can be a very transformational journey.
So the measure isn’t can I do what I used to do.
The measure is these goals, aspirations for all people, including young people are growing and changing over time.
And I stay true to that to to what matters to me and that that’s I’ll say I’ll give you this final line on on that one.
That the whole art of doing recovery-oriented work is staying with people in such a way that we get the focus off of what’s the matter and get the focus on to what matters to you.
That’s if you don’t have something that matters to you.
You know when they say you got nothing to you got nothing to lose them, right.
But if a young person experiences you as being with them in terms of focus on what matters to them, that’s half the battle.
Thank you so much, Pat.
I just want to thank you.
I I have.
I just have admire you and your work and have for years and years and I can’t go a single session with you without learning something new that I can then apply in my work and in my life.
And this is this.
Today was no exception.
Thank you so much for what you’re doing with your life and time.
Thank you Pat for giving this presentation.
It was just so beautiful and nicely done.
And I’ll echo wills points about always learning so much from you.
And thank you all so much for being a part of our third webinar.
A reminder, we will be sending out a follow-up e-mail with a link to view today’s presentation and information on receiving a certificate of attendance.
In that e-mail will also be the link for accessing Pat’s website, the Common Ground Program, where you can sign up for her monthly newsletter.
We hope you can join us next month, September 10th at noon when Doctor Lisa Dixon presents Creating a Learning Healthcare System and Early Psychosis Care Challenges and Opportunities.
Doctor Dixon’s work has joined individuals engaged in self-help outpatient psychiatric care, as well as clinicians and policymakers and collaborative research endeavors.
Thank you for being with us and we hope to see you next month.
Until then, take good care.