David Watson, MD | Amplifying Safety Cultures in Healthcare Systems

"The idea of what is called a just culture and what that means is that we adopt the ability as an organization to look at things that happen as learning opportunities rather than opportunities to punish" David Watson, MD.


David Watson, MD is a physician surveyor for The Joint Commission. Dr. Watson work for The Joint Commission serving hospitals for accreditation one week every month.

 

About The Joint Commission

The Joint Commission is the accrediting body that goes around every three years and looks at hospitals to make sure that they meet certain standards of care and that they are able to demonstrate those as we walk through the facility. As we look at the way they take care of infection, the way that they prepare food, the way that they write orders and things in the chart. We then have an engineer check out the engineering of the facility.

The standards all started many many years ago back at the turn of the last century when the American College of Surgeons decided that hospitals needed to have quality done in the same way at each hospital. That is how The Joint Commission started. It eventually became a collaboration of several organizations in about 1960 with the hope that we could give the same quality of care to all patients who received it in the United States.

Safety & Quality in Healthcare

Well safety is the foundation of good health care. Right now The Joint Commission has adopted a new motto and that is “Zero Harm”. Our goal is to work towards that and all the safety measures help us reinforce those things. For a long time we thought that we couldn't adapt things that they do in industry, but we found that those high reliable processes work very well in medicine eliminating things that are infections on a recurring basis.

We know if we take certain steps we can prevent those and just looking at safety overall. Making sure that the sterilization process in the operating room is done properly so that they go through those steps. That scopes are used for doing endoscopy those are cleaned properly. Those are all safety things that are very important and we've heard the stories where they are not carried out properly.

The Las Vegas endoscopy clinic for example with all the problems that they had there. Someone needs to be making sure that happens.We are one of the many bodies but the largest by far of the hospitals that we survey and take care of and I really enjoy being part of that process.

Thoughts On Hospital Systems That Prepare For The Joint Commission's Visit

It’s one of the things that I always say to hospitals when I survey. The words I don't want to hear is “we prepared for the joint commission”. We’re here to look at you at a point in time and hopefully that allows us to come as just be another set of eyes and have the opportunity to look at what you're doing. If you don't meet the standard we're going to explain why and give you some options to help you.

If you exceed it, and have some really great things, I'm going to look for those too because I want to take those back. I have this philosophy about medicine that are no good secrets in medicine, people need to share the good stuff. This is not like inventions. These are things that have to do with the wellbeing of all mankind, so we should share them.

Collective Mindfulness; Going Beyond Policy To Ensure Safety, & Quality As It Relates To Healthcare Workers Experience.

Policies are crafted to make sure that we have coordinated consistent way of doing things. They are the framework by which we can have all employees do the same things for the same purpose. That's one of the things we look for in The Joint Commission. When there are things that we look at that we are concerned about we want to make sure that what the organization does agrees with the policy that they read. And, it's a very intricate part of the everyday survey.

There is a concept out there as far as safety goes and the concept basically is called collective mindfulness which means that every person in the hospital is a safety officer. Therefore, if you're walking down the hall and you see something on a tile that doesn't look right, you pick up the phone and you call the people in maintenance and say “Hey the tile outside of room 247 isn’t staying, maybe something is going on”, or a stain there may be some of them. I can take a look at it if things are dirty, if something is broken or something is outdated.

It's everybody's responsibility to take measures to make sure that that's corrected. One of the other things that I like to see is, I used to do interventional blocks. I like to see the count in the operating room tagged in such a way that not only do I know that it was inspected but I know that it was inspected within the last year. I don't just look for the number but a color code that says, when I pick that gown up and put it on to protect myself from the radiation. I know that it was checked and I know that I'm doing it not because there's a policy that says I should do it but also because I know it's going to protect me.

Just Culture | Balancing Accountability In A Non Punitive Way To Reduce System Errors, Ultimately Improving Patient Safety

It's an idea of what is called a just culture and what that means is that we adopt the ability as an organization to look at things that happen as learning opportunities rather than opportunities to punish. We are open to look at those things that don't go right to figure out why they don't go right.

As I said a little bit in my talk (#PESummit), I pointed out that even when these adverse events happen 85% of the time they don't involve a medical error and even when a medical error happens over 90% of that time it has to do with the system. That the system has not organized itself in a way to prevent people from being put in that position. That pretty much sums up why we need to look at this overall structure and say “hey these are opportunities to learn not to punish”.

Real Life Example:

While on orientation (day 3) a nursing assistant was instructed by an nurse to place a hot pack on a patient’s pelvis area. The hot pack became open at some point and hot fluid from within rushed onto the patient’s skin causing burning to the scrotum. The nursing assistant was immediately told to leave the facility after the accident.  

OK, this happened but why did it happen? Did that person do it intentionally? I don't think so okay. Was she trained properly? No. Is it a systems issue? Absolutely. That goes right down to leadership, it goes back to immediate supervisor. It goes back to one of the things that we look at, always look at competency for people to see if they've been trained.

If they've checked off on that every year and if they still have that competency level. She probably hadn't even been given the ability to have the competency to begin with. Ultimately the responsibility for what happened here lies with leadership and that's the way I would look at it. That's the way it would look if I were doing a survey.

Applying Emotional Intelligence in the Medicine

Well it's that balance between what you feel and what you know. If you can apply that in the sense that it gives you that feeling of what you're doing is right, for me it would be almost like that second voice of reassurance that you're on the right track.

Thoughts On The Future Of Healthcare When Coupled With Technological Advancements  

I think there are great opportunities out there for the use of the advancements in technology. We’ve seen so many things come. I was blessed to start in anesthesia back in the 1970’s where everything was manual. I pumped up the blood pressure cuff, I listened to the heart, I felt the patient's pulse, I looked in a patient's eyes. This is all done by machines now and that microchip has come a long way.

Other things that are coming in the future I think would even be far more changing. We have the capability now of putting up a little dot like a band-aid on your wrist and it can read your pulse, your temperature. It can even by impedance tell what your blood pressure is. Now a nurse 50 miles away and she has a computer is able to Skype. She can take that information, look at you on there and to say whether she needs to come out to your house today or not. This will allow healthcare to become more efficient and hopefully less costly.

Maintaining Enthusiasm In The Medical Field

I think the excitement for me is the possibility of leaving medicine better than I found it. I started medicine in the 70’s when things were rather crude compared to what today is. Along the way I've learned lots of things and hopefully I can share those with others in their journey to make medicine better. It's always that pursuit of excellence. That wanting to reach a little bit higher, to do it a little bit better and always with the goal in mind that we're taking care of patients and we never want to harm them.

Embodying Empathetic Cultures In Healthcare Systems


I think the empathy for me and the important part of this conference (#PESummit) is what I talked about earlier, that second victim these are healthcare workers that are involved in an adverse event. The empathy that needs to be expressed to them is that connection of realizing that they've been in a difficult situation and they need to be supported.

They need to be reassured and they need to know that they went into medicine for the right reasons. They take care of patients because they love what they do and they should continue to have that fire in their eye when they go to work every day to be totally engaged. We know that total engagement leads to less errors so we want our workforce to be engaged.

Closing Remarks

This has been a fabulous opportunity to meet with other people who are concerned about the welfare of patients and about the welfare of their fellow healthcare workers. An aspect that isn't often overlooked. We take great care of patients but we don't always take the best care of ourselves.


The Joint CommissionWebsite | Twitter

Elevating Interactions in Healthcare, By Jason A. Wolf, Ph.D., CPXP

"Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience" Jason A. Wolf, Ph.D.. 

 


Jason A. Wolf, Ph.D. is a passionate champion for positive patient experience #patientexperience #PtExp, organizational culture & high performance #healthcare. Dr. Wolf is the President of The Beryl Institute and founding editor of the Patient Experience Journal

The Beryl Institute

We’re a global community of practice on creating improvement on the patient experience through shared knowledge and collaboration. We have really built a global community of individuals across segments of the healthcare practice to engage in discussions on what it means to improve the healthcare environment for those both receiving and delivering care. We’ve done it through the building of educational materials resources such as thought leadership, webinars, to white paper, research and elsewhere. Also in bringing people together just in communication and networking to learn from and share with one another.

Defining Patient Experience As Outlined by The Beryl Institute  

The sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.

Those four aspects of the definition, the idea that its based on interactions. That it’s grounded on all touch points across the continuum and also in the spaces in-between. That it is ultimately the perceptions that patients, families, and their support network that are the indicators of success in experience and are all critical elements.

While it is a simple phrase, there's a great deal of complexity involved. It does bring us back the fact that in healthcare we’re in a business of humans being caring for humans beings. Therefore, if we can't get the interaction part right i.e personal interaction or clinical interaction we can really never deliver on experience promised in the kind of organizations that we build.

What we mean by culture are the means by which we deliver all those interactions. We have to get all those elements right. Its not simply just getting our checklists right or our clinical protocols correct. It's really about building a systemic solution that drives lasting, sustained outcomes and positive experience for everyone involved in the healthcare encounter.

Discussing Barriers That Hinders Achieving Patient Centered Care

The barriers to experience excellence are interesting. We can go with what the data says, which people always say that it's time, leadership isn't focused, there’s too many priorities etc. I really think that probably the biggest barrier right now is that people are still trying to get their arms around what it is. All too often we have tried to over apply tactics to what really is a systemic issue. I believe that probably one of the bigger barriers to truly providing the most positive experience, the idea of engaging people from patients and families to having patient centric principles to thinking about patient activation---all the terminologies that we use.

We’ve separated all these pieces and instead not really thinking about the systemic solution that as a human being in healthcare delivering care to human beings what is that experience we believe people deserve. Stepping back and thinking about the broader conversation of what experience can be is one of the greatest means by which we can actually overcome that barrier. I do think we get stuck in the mechanisms of healthcare all too often. Thinking about the system that we create to deliver on process and not really thought about the broader strategic impact that we hope to have. That does get in the way of our capacity to ultimately provide the best experience.

Thoughts On Technology & Its Capabilities In Improving Care Quality, Patient Safety, Patient Education, Diagnostic, Clinician Collaboration etc.

Technology is the key lever, it's one of the strategic filters of experience. In a number of ways is the means by which we now communicate with people. It's the means by which we now share information. It's the means by which we can create more efficient and expedient processes.

We would be remiss if we didn't understand that there's a technology aspect to providing better experience and better outcomes but it's not technology for technology sake. When we begin to think about building an experience that really impacts people, its the core ideas of the definition. It is then the resources that you can put in place to ensure the best in experience.

If we realize that technology is a tool in our tool bag in terms of ensuring that we can elevate experience and we use it in that way with the right strategic lens, I think it does have a significant impact. The application of technology for technology’s sake I think we’ve seen that not necessarily work to our advantage and sometimes it can even become a burden on people’s capacity to provide experience really well.

Framing The Future of Healthcare; The Importance Of Shifting Organizational Culture To Improve Patients Perception Of Care

Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience. Creating healthy folks in delivering care, ultimately ensures better outcomes for those that healthcare delivers care for. However, they have to do that in partnership.

The ability to engage in where healthcare is going, is going to be centered on this idea of partnership, co-design and co- production, engaging all voices. And, not only the creation of solutions but in the next steps forward in terms of designing what healthcare can and should be. Healthcare has got to challenge itself a bit.

I would even be so bold to say, the word and the phrase patient centric is actually a provider centric language. We are saying that we believe from healthcare that patients should be at the center of care. I had a very wise patient say to me when I was speaking in Australia, “nobody asked me if I wanted to be in the center. Do we really always want to be there?” Not to simmer from that, I think that the evolution that we’ve heard in healthcare--from doing to patients to doing for patients, to doing with patients.

We can’t see everything as linear in that way. In fact, there are moments where I think as patients and family members we know things are going to be done to us or for us, not always with us. We have to find that ability to balance between those things and create the right kind of conversations that we are able to co-create the future of healthcare.

The Role Of The Beryl Institute In Setting The Stage For Improving The Patient Experience.

The role that The Beryl Institute has is to serve as a neutral ground for this conversation. To push the boundaries of the discussion, to help elevate the thinking and create a safe space for people to share the greatest ideas and really almost circle around failures and find means for improvement. My hope is that we continue to push the experience story, not as a nice thing that healthcare has to do. We’ve always said that we believe if you think about healthcare from an integrated perspective, if you think about experience from an integrated perspective, then it is about quality, safety, service, cost, access etc.

For us it really is about continuing to elevate the integrated perspective, that all that we do in healthcare ultimately contributes to the experience people have. That in fact whether we plan for it or not people are having an experience in healthcare today.It really calls on healthcare leaders to realize that they can create that experience or just leave it to chance.

So, for us to instill a sense of strategic imperative that this isn't about satisfaction, it's not about making people happy, but its about driving the outcomes that we believe healthcare is capable of. That the people that are experiencing healthcare deserve. That will continue to be our rally and cry. That's the opportunity we have and it's the conversation we need to stay in together in terms of driving the right outcomes for healthcare today and well into the future.

Defining Empathy In The Patient Experience

We did a research on empathy, compassion, all these kind of things. We asked consumers, to what extent empathy and compassion was important to them. I was actually surprise, it came down the list. I think it's because, empathy is a healthcare centric language. A typical patient and family member out there knows what they want to see. They want to feel listened to they want to feel like they are being spoken to in a way they understand etc. Those were the things they elevated in terms of importance.

For me the lens is not to get stuck in what empathy is but to think about what does it look like in action. I’m probably less concerned about how we define empathy. How we elevate empathy and the actions that we take to ensure that patients, family members and those that are delivering care feel heard, are communicated to effectively, are engaged in ways that matters to them, then they feel what we believe empathy is.

All of those things without having to put a label on it in a way that is about us doing something but more so about engaging the folks in care themselves. We do actually amplify empathy, we do elevate the delivery of compassion by moving beyond the words to the actions. Ensuring that we engage people in those ways, that they feel as if their experiencing the things that matter to them not words that we think equate to that.

Closing Remarks

It's important that people know that The Beryl Institute is a name. We’ve been very clear that it's not and has never been about The Beryl Institute, or Jason A. Wolf, Ph.D., CPXP its about the conversation and the community that we bring together. To be able to participate in a way that we think is changing healthcare. We’re a community of practice, our job is to catalyze and get out of the way and ensure that conversations like this can thrive. Anybody that's thinking about contributing to this kind of dialogue and elevating their own contribution to healthcare that needs to happen.



Jason A Wolf, Ph.D., Website | Twitter 

The Beryl Institute Website@berylinstitute 

Patient Experience Journal Website@pxjournal

Ashley Elliott, The Road to Sobriety; A Call for Resources in Rural Communities to Combat Drug Usage, Stigma & Addiction.

"The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma. Get past the negativity of addiction and see it simply as what it is and that's a disease" Ashley Elliot.

 


Ashley’s Health Journey Through Addiction

My story more often than not, coincides with addiction. I am a recovering heroin addict. I've been clean since December 28th 2012 and since I've gotten clean I decided to take a path to help others whenever they're struggling. I know for me when I felt hopeless if it wasn't for the women in my life that had lifted me up I don't think I would have made it .

My goal is to help those find hope that think there's no hope. In my darkest days I would say I probably had no idea what was going on at any given time. I went from being an all honor student in my freshman and sophomore years of high school-- straight A's to slowly decreasing my workload. I was a merit student my junior year and by the time was a senior I was a general student. Luckily enough I still graduated with merit a diploma.

That was the start of the dark days that really just kind of involved drinking along with experimenting with a few different substances, nothing too extreme. By the time I had graduated high school I would consider myself pretty deep into my addiction not rock bottom but still pretty deep. What would happen over the next twelve years would be me finding my own, falling in love.

I always made the joke that heroin was my first love, it never failed me, it never let me down. Every time I wanted to do something it changed the way I felt, it did just that. After that point it was really weird. I went from using to needing and I don't remember it. I don't remember when I went from recreational use to addiction, to dependency.

I would go through several different treatment centers, methadone centers. I tried suboxone. I tried moving to California. I thought if I just packed my bags, leave and go somewhere else where nobody knew me I could just start over and be whoever I wanted to be. The problem with that is wherever you go there you are you know. At that time I didn't realize the problem was me. I thought it was the drugs. I was in two very abusive relationships. The first one was we were living in Nevada and he ended up head-butting me and breaking my nose in the front lawn of our home. Shortly after that I had ended up running into an old friend out in California. She saw me and I think I’d probably been about 140lbs at the time. My collar bones were sticking out, I was rather frail. She bought me a plane ticket and three days later I came home.

When I came home I just got involved with the same people. When I did that, that’s is when the legal stuff started happening. The first time I ever got I trouble I had actually lived right up the street. The apartment that I was living in got raided and that was the first time I had been arrested. After that point it was just one after another getting arrested. Eventually I tried to do it on my own. Got involved with another boyfriend who was rather abusive. Fast forward my first treatment center I decided to leave AA, which is against medical advice. My thought process was; I was going to leave, come home, use go to court and go to jail

I was okay with that. I thought that was a solid plan to me. That's how crazy the disease of addiction is. I did that, I left, I came home, I used, went to court and the judge said “Punish her to rehab”, which was not a part of my plan. Over the next two months I had to wait 30 days because I left AA. I had to wait another 30 days for a bed to open up. Within those two months the apartment I was living in had burned down. Under the Influence I had fallen asleep on my hand for an extended period of time which caused something called Saturday Night Palsy.

It’s where an addict or an alcoholic passes out on the extremity and does nerve damage. I had no use of my hand for over three months. I was an I.V. user and there was a point in time where a needle had broken off into my arm and I left it there for six years until I had gotten clean and got a straight head on and I had surgery to have that removed. My kidney functions are extremely low. The way they explained it to me is that my kidney function is that of a 70 year old. I think that's due to all of the different opioids and the wear and tear on the body.

Emotional Health and Addiction

A big part of the health effects is the emotional state that people wanders in while being in addiction---I'm a very outgoing person and I can talk to just about anyone, anywhere about anything. When I was using, I was afraid to leave my house. I'd lived less than two or three hundred yards from a grocery store and it took everything inside of me to get up, get myself dressed to go to the grocery store just because my anxiety levels were so high. A lot of people use to try and escape their feelings of depression or anxiety.

In reality the only thing it does is increase this. I was going through panic attacks, and a lot of the different medications. I was having on medication induced seizures. I just think of it I felt like my body just couldn't go anymore. My sister pointed it out the most. The way that my family always knew I was using, was how much I weighed because I would get her periods of extreme weight loss while using and then gaining that back while attempting to get clean. The health effects I had have lasting effects, psychologically, physically, and emotionally. It takes a long time to heal all that stuff, to accept it, deal with it and move forward with it.

Finding a Support System in a Sponsor

I do honestly say that without my sponsorship family I don't think I would still be clean today. When I went into treatment the first thing I told my counselor was “I'm going to tell you I want to go home, not to let me go home. Don’t let me go home”. But she didn’t, she relocated me to a halfway house down in Frederick Maryland. While you're in treatment it's basically almost like a brainwash. I’ll say if I needed to be brainwashed to get away from whatever I was doing before I was totally okay with it. I really got involved in a twelve step program. It took me about six months after I was really involved in the program to be clean.

The reason that is like I said look for my clean is December 28, 2012. This was the first year I was down in Frederick, I was my first Christmas. I remember I was getting ready to come home and my sponsor and I had come up with this plan where I stay at my sister's, she's my safe zone. No contact with old friends or ex’s. I didn't do anything she suggested. When I went home I think the first thing I did was contact my ex. he brought my dog over. My sister's kids were so I ended up staying at my parents which I ended up using, so I'd used all over Christmas. It was December 27th, my best friend and my sponsorship family called me to wish me a Merry Christmas. I thought what we had was just a normal conversation. When I got off the phone probably less than five minutes later my sponsor called me and trying to walk me through my thought process.

I had my dog which meant I saw my ex, I was at my parents which is not a good place for me. She was trying to get me to realize all the decisions I was making weren’t necessarily the best ones. The last thing she said to me was---she worked the night shift as a security guard at a prison and she said “I don't have to work tonight. I don't know if you want to white knuckle your way through this situation, but if you don't I'll come and get you”. I was kind of just like “Okay you know I'll think about it. I'll call you back”.

When I hung up the phone it was at that moment that I realize that these people that I barely knew six months really wanted nothing but the best for me. I think that was my reality check. I ended up calling her back and I said “Come get me”. My sponsor and my best friend drove three and a half hours from Frederick up to Garrett County in the middle of a snow storm to pick me up and take me back home. That’s why I consider the 28th my clean date because I haven’t used since. I don’t drink, I pretty much don’t do anything.

Trials During Recovery

Throughout my early recovery and my first year or two I remember a period where it was around my first year clean and they say in the twelve step program that at your anniversaries you start going crazy. That's what I was experiencing. It was around my first year I had no idea why but I just wanted to mess things up. You know I knew I couldn't quit my job because I needed my job. I liked my friends so I didn't want to screw anything up with them.

I just couldn't come up with anything to ruin, but that's all I was thinking about because I was an addict. A lot of times my first thought is self-destruction especially when I can’t deal with feelings whether they be good or bad. I remember texting both my sponsor and my best friend and telling them that everything I was doing was reminding me of using.

My best friend sent me this long message of all of the things she knew about me through my active addiction, including you know the abusive ex's and going to jail and all that stuff. Then she sent me another message of everything that we had done in recovery and now. I'm saying your first year of recovery I lived more than I did in those twelve years of using even though I went all over the place, California, Nevada etc.. I still didn't really experience anything because I was never present in the movement. When she sent that to me she followed it up with “Think about those two and then tell me if you still want to use”. I was living with my sponsor at the time, I’d gotten home and she told me to get dressed and I didn't know why, she didn't tell me. She just tell me to get dressed.

I got dressed and my grand sponsor, which was her sponsor showed up and they took me to a baseball game and made me sit there. I sat at this baseball game and I cried. I cried and I cried and I cried and my grand sponsor's theory was always “When you don't know what to do you sit on your hands”. That's what I did. I just had to sit through it and here I am at the Frederick baseball game, everyone’s having a heyday and I'm bawling because honestly I don't know why.

Situations like that, like if they weren't there for me in those moments, if I were to allow my own thought process to continue I eventually would have came up with the idea of the best solution right now is to go use. I strongly agree that a social support, an emotional support, it is a key component of recovery, you cant do it alone. It’s a lot easier when you have people who understand what you've been through.

Sobriety & Stigma from the Medical Setting to Society.

I know for me sometimes it's tough with my health issue trying to talk to a doctor and being taken seriously. I'm a recovering addict and once they hear that, the word human being goes out the window. It's definitely tough and sometimes you've got to have thick skin because there are some pretty mean people that have a very closed mind and aren't very understanding. I kind of just smile and nod at those people. It’s been six years since I entered my first treatment center and in two days I'll graduate from college. That's crazy to me to think back to where I was.

Sharing Story to Impact Change

I remember when I went to MedX to speak on a panel session. Standing outside and seeing the big sign that said Stanford University and I just thought to myself “How did I get here?” I didn't understand it was so weird. I do attribute it a lot of this to Regina Holliday. If Regina hadn't brought me to Cinderblocks, if she wouldn't have asked me to share my story, all of these other people wouldn’t have heard it and I wouldn’t have had the opportunities that I've had over the past year. I remember when I told my family what was wrong with me, what was wrong with me being addicted to drugs at that time.

It was suggested to me by my counselor at the treatment center that I was at. I was an outpatient methadone treatment center. I gather my family together granted my family is well known in the community. My brother in the department of juvenile justice for 20 years. He’s the Cub Scout leader. Everybody knows my brother, both my sisters, one’s a teacher an elementary school teacher and the other one is a guidance counselor secretary. You could definitely say I was the black sheep of the family and I remember when I told them they didn't understand because they didn't know and they didn't know anything about it.

Public Health, Education & Addiction

If people were more educated about addiction, what causes it. The interactions, the pharmacology between the different substances. How they affect the brain. Just stepping outside of their shoes and trying to look at it from a different perspective I think that would have a huge impact on things. A lot of people feel shame and guilt because of their addiction and are embarrassed to talk about it. One of the doctors on the panel at MedX said it best, for years addicts have been lepers. That's what we are once you have that label there's no turning back. Again, when people don't have that in mind, the empathy or compassion to understand, they don't get it.

It’s a fruitless battle. I definitely feel that education, knowledge, understanding simple human being decency is needed. Nobody deserves to die no matter what they choose to do or chose to do it, I hear that a lot. “They chose to use so they deserve to die”. I can speak from experience that there were many times I used against my own will. I did want to be doing what I was doing but I knew physically I couldn’t go on without it because I was dependent on it. In our twelve step program we say “Drugs aren't the issue. Drugs are side effects of addiction”. Our real problem is the way that we think and the way that we feel and not being able to cope with those things. It's exhausting and it's long it does take a lot of motivation. I would say self-will but that's really nothing at all one has to deal with.

A Call for Resources in Rural Communities.

Whenever I was using in this small town I had no idea about resources because it wasn't something people talked about. I remember going to treatment and going to my first twelve step program and they're like “You’ve never been to a meeting before?” and I had no idea what a meeting was. I didn't have the resources here. The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma.

Get past the negativity of addiction and see it simply as what it is and that's a disease. Much like a diabetic who takes their insulin every day, an addict get a daily reprieve by simply choosing not to use and more often than not when the addict that chooses not to use is a miracle. Because everything in my being says use, use, use and every day that I choose not to do that is a miracle and nothing short of that.


Ashley Elliott is a recovering addict, patient advocate, psychology major, guest speaker at Medicine X and repeated speaker at Regina Holliday’s Cinderblocks5

Contact Ashley Elliott: Twitter

Rob F. | HIV Saved My Life; Living With Chronic Illnesses & Navigating The Public Health System

"The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all" Rob F. 


Rob is a patient advocate living with type 2 diabetes, epilepsy, chronic asthma,  chronic environmental allergies, high blood pressure, a skin condition called ichthyosis and is also HIV positive.

I manage all these diseases with the help of medical assistance and I’m on SNAP. I have not had health insurance throughout life until I was diagnosed with HIV. Trying to get through those years prior to having insurance was a grind. I needed health care to hold the job, I needed to hold the job to get the insurance to get the health care. I was cycling through jobs every twenty days to eighty. I couldn't really keep anything. I tried my best to grind it out but I failed no matter what I did.
The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all? Any one of these diseases can kill me. Diabetes is the most diabolical things I ever have to deal with because it involves changing your entire life. Without a disease that had a lobby, without a disease that had a high profile, I would be dead. It shouldn't be that.

Coping with Chronic Diseases on the Public Healthcare System

Coping with those diseases on the public health care system is really difficult because a lot of those disease have specialists. Those specialists even within the same hospital system like I have, rarely talk to each other. Giving information back and forth to them is difficult and also they don't understand exactly what's going on in each other’s care. It’s like learning how to juggle six halls but it's from six different people. They all teach you how to juggle one ball back and forth. They don't understand the interplay between all six.
In my case asthma which is treated with steroids; steroids will up your blood sugar. The higher blood sugar goes lower your immune system goes. That works with HIV and makes my skin dry, also the lithiasis makes my skin dry and plate off. I'm constantly itchy. I constantly have an open wound somewhere. My skin integrity is almost never 100% and I’m possibly fighting an infection.Recently I just spent a week in hospital on IV antibiotics and was discharged to two more weeks of more antibiotics. This happens to me sometimes 2-3 times a year. It's not like optimist infection.

Unemployment, Social Security & Disability

I'm not eligible for social security disability. I’ve tried 3 times. Makes it really hard to work and keep a job because I can’t keep a job long enough to get the insurance. To get the health care I need to keep a job. If I try to work I lose my health benefits. If I work the health benefits I get may not cover everything I need to have covered. Currently I spend retail, insurance covers about $100,000 worth of prescription drugs in a year for me. My HIV meds alone are almost $2,000-$3,000 a month.
If I were to afford that myself I would have to go straight from the unemployment to Google which is not going to happen. Fixing that really is almost fixing the entire system. Employment is difficult right now for me because of the doctors' appointments I have to keep. I was actually told in a job interview that they thought their job was not a priority for me, that I would be too busy in doctor's appointments to give them 100% of my time. Which is true I do enjoy breathing and walking on dirt and not being buried under it.
So they're right but I don't think it's a really good reason to keep me out of a job.  Trying to go back to school and get educated, is difficult to do monetarily, education is expensive. It rises faster than inflation. I have a hard time with attention. Sometimes balancing all these prescription drugs several of them say may cause drowsiness or dizziness and darned if they're not right. Sometimes I can sleep 10, 12, 13 hours a day.
I don't need to, I barely made it here (#Cinderblocks5) this morning but I do what I have to do. If not for love of a good woman and a good support group like here at CinderBlocks I would not make it. I feel like it's important to let people know that there are people like me out there in the world. They’re falling through the cracks. Between disability and unemployment and being eligible for things like food stamps and medical assistance. I was uninsured until I was 38. When I was 38 I was diagnosed with HIV.
Then I was worth helping, then I could get the medical assistance, then I could treat my diabetes, epilepsy and everything that came after. All of those things were being managed by me in patch-work. I knew they were there and a lot of times I just had to either ignore them or just live with the consequences. It has certainly made things harder now. I would love to have a low blood sugar, but testing supplies cost money insulin oddly is available over the counter but needles aren't; i.e you would have to find a doctor who would give you a prescription for needles and tell them “look I may not be able to come back for six months to a year please load me up”.
If I can find one who would do that, I would do that. But even then, maybe two to three doses a day, no long acting insulin. Trying to figure out how that works, kinda wrecked my life. I spent 20 years that way and if you can't get any traction, can't get anything moving, you find yourself where I’m at. You’re 45, you’re sick, you want to do more with your life but who wants a 45 year old straight white dude with no education? My time I feel like it’s passed. This story is all I have now. I will tell it to anyone that can benefit from it. This system needs to change!

Support System

Its hard to find a good support system. I don't have family that I can rely on. I was an unwanted child. I survived an abortion attempt. I was born 1/20/1973, Rode V. Wade was passed 1/23/1973. My mother told me “3 Damn days” for most of my life. I had to look it up to find out what she meant. She tried to abort me. I have a scar on my forehead, that lit up like a Christmas tree during my first MRI procedure and that's because there were metal fragments in my forehead. She tried to hang me.
I can't trust my family, there's really nobody there. I have drifted in and out of relationships, places to be, and places to go. I finally found one good woman. She from England, her name is Victoria, she just graduated nursing school and she saw the good in me nobody else could. She plucked me out of a gutter 10 years ago, took care of me, made sure I took care of myself, that I was okay, helped me through my diagnosis period. Helped me get back to the doctor. Helped me realize that it was worth it.
Regina Holliday and The Walking Gallery
Four years ago, my friend Regina Holliday reached out to me and let me know that she had an advocacy group going, for patients by patients. She thought my story was worth telling. I came, I took part in a panel and something inside of me just let loose, I spilt my guts in front a room full of people. Most of my family, friends, don’t know anything about what I’m going through but it was received well. Regina kept asking me to come back and tell my story. I’ve try to find different avenues, tacts, ways that it affects me because I feel like I’m presenting in front of all of these talented wonderful people that are changing the world and I can’t even change my own life.
I’m an advocate for this patient. I wish I can be an advocate for more people in my position but I feel like I don't have much credibility of standing to help those people. That's what the world tells me. Without Cinderblocks, without these people behind me, letting me know that I’m important enough to be listened to, be heard, be interacted with I probably wouldn't have made it through the last 4-5 years.

Health Politics & Patient Advocacy

We’re in an age right now where healthcare is a big issue, drug prices are a big issue. Its a political issue now. Half of the politicians just see me as an easy vote. I vote for them or the other half will demonize me, call me a lazy and take away my benefits. Non of them address my issues. Non of them will help me, others like me or people who watching/reading this, with affordable healthcare affordable drug prices, and matching the world in efficacy of treatment.
We spend the most, over 3 trillion dollars a year in healthcare, we’re not even top 10 in results. We’re definitely not one of the happiest places to live. It's almost like justice in this country, you can have as much as you can afford. The only way that can change is for people like me, and the people here at Cinderblocks people like Regina, people like you watching/reading, to stand up and to tell your story and to tell what needs to be done in your own life and how that can be done for you. The more that we know about what's going on the more people may be motivated to try to change it.