Ilene Corina: “I couldn’t believe it when the doctor said ‘no’.”

Ilene Corina, PULSE of New York

The National Patient Safety Foundation (NPSF) annual Congress will bring some 1400 patient safety champions from around the country to New Orleans May 8-10 2013, to collaborate, brainstorm, teach and learn. As guest blogger for the NPSF Congress, I'm privileged to share the amazing stories of some of the champions of patient safety who'll be attending. This profile will cross-post on the NPSF Congress website this week.

Who: Ilene Corina

What: President, PULSE of New York

Member, NPSF Board of Governors, 7 years 

ICorina@aol.com

www.pulseofny.org, www.patientsafetyconsultants.com  

Ilene Corina has experienced the best and worst in health care. Her first child bled to death after a routine surgery. Her agony intensified after his death, when the surgeon who’d dismissed her concerns about her son's bleeding post-surgery refused to take her phone calls. But it was another event years later that would propel Ilene into a lifetime of patient advocacy. Today she believes that in order to stay on top of health care, there is no substitute for sitting at the bedside of a patient.

Pat Mastors: What brought you to patient safety in the first place?

Ilene Corina: Most people think it was the death of my first child, Michael in 1990, who bled to death from a tonsillectomy, that sent me into the work of patient safety, but that's not true.  I was in too much pain then. The impetus was the feeling of helplessness years later when my youngest child needed surgery.

Matthew was born severely premature at just 23 weeks. His team in the NICU was amazing, and he survived. But when he was three years old, and I needed an anesthesiologist for his surgery in 1996, I was told I couldn't choose the anesthesiologist myself.  Even though my son was born premature, had 24 hour nursing care and lung problems, and I went to meet the anesthesiologists in the weeks before his surgery with his list of medications, lung x-rays and medical records. When the doctor said "no"-- that I would have to wait until the day of surgery and see who would be available-- I was stunned. The system was taking away my right to choose a doctor for Matt, after I'd helped get him over the painful humps so early in his life.  I was determined to change things-- or at least be heard. I knew it was time, right there, to change the rules, were I ever to need to do this again. 

 

The joy in all of this is that Matt not only survived being born so early, he had no disabilities and today is a healthy young man in college. I credit that to the partnership between me and his medical team, back when he was born. I like to think I experienced the worst in healthcare and I experienced the best. I now want people to know what I know.

Pat Mastors: What’s the most encouraging thing that’s happened in the past year in patient safety? The most concerning?

Ilene Corina: The work that I am doing on Long Island is growing.  Our Patient Safety Advisory Council has grown and we have looked at patient safety as it pertains to individuals, not just a society as a whole. Some of the groups I have worked closely with are people with disabilities, adults with low literacy, transgender patients and teen moms.  All our work is at the grassroots level. I learn more than I can teach, and that's exciting!  We are teaching about patient safety, and then learn what it's like to walk in their shoes, what their obstacles are, and how they’re navigating them. Then we develop tools to help them feel more empowered and improve their care.  We hope to help the people who work in the healthcare system understand what we have learned and incorporate our findings into their work. 

  

I think the most concerning thing is still the lack of funding available for our type of work.  There are hundreds of community members representing breast cancer support, HIV/AIDS, Autism, veterans and bullying, but not enough representing patient safety.  It's hard to grasp or show the full scope of the need when there are only a few of us working on the changes.

Pat Mastors:  What will you uniquely bring to the discussion at the Congress?  

Ilene Corina: I am not presenting at the Congress but I will be looking for collaboration...NPSF is the leader in bringing the patient and families voice to the table.  I like to think that we do the same at PULSE,  bring everyone's voice to the table.

Pat Mastors: Where would you like to see more energy focused?

Ilene Corina: Two areas. Our Family-Centered Patient Advocacy is growing and our small classes fill up now. I would love to hold classes more often.

I also think that the people who make the big decisions in the hospital setting may be losing track of what goes on at the bedside. I feel obligated to spend a certain amount of hours a year with people I do not know at their bedside so I can watch independently what happens and practice what I preach for others to do. Do they wash their hands or introduce themselves to the patient?  Are they giving out pills in little paper cups and not asking the patient her name?  Is the doctor asking the patient questions and having the patient answer appropriately?  Does the nurse seem stressed?    I need to know what is happening at the bedside.  If problems need addressing, I will write to the hospital and I also blog about my experiences. These are things no one can see regularly unless someone is willing to plant themselves at the patient's bedside…and I am willing! 

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Pop The Cork.. Get in There!

Finally I received a phone call to say I’m being treated at the Royal Marsden. I explained why I wanted to be treated by them and they were more than happy for me to jump ship and join them. It was explained that in a year I may have to leave them once the Herceptin is done, but this will be reviewed then. They are requesting all my notes to review my treatment and to sit down and explain the results. They were surprised that no-one had taken the time to explain anything since finishing the chemotherapy and radiotherapy. That my notes were not present at my last appointment for me to ask any questions was inexcusable.

Every question the Royal Marsden asked I said I could not answer because I did not know. I said to be perfectly honest I’ll be happy just to put this whole mess behind me. I explained my only concerns were from the recurrence and my pathology report from my mastectomy in 2009. That my calls of concern were ignored, and if it was not for my vigilance my recurrence would not have been detected until it was too late.

So now I can breathe a sigh of relief and I meet my new oncologist on the 1^st May.

And from there I want to share my first attempt at an oil painting. Yes it is a portrait of me and I’ve entered it into a competition. The title of the painting is... 

‘Contemplation with a big C.’

Thank you Marie Beattie for the title xx

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Being Pro-Active

Yesterday I spent two hours inside the Houses of Parliament and it was an eye opener. A plumber is employed to fix a leek, a dentist fixes your teeth and a doctor cures the sick, but what credentials does a Health Minister need to be a Health Minister?

Just go to a University and study as a barrister and be a private secretary to the prior Health Minister that’s all. From there you surround yourself with experienced individuals in their chosen field as advisers  With the guidance of these individuals in the background decisions are made. Or at least that’s how I understand it, but I’m open to corrections.

For 30 minutes in a committee room I listened intently as our health minister was quizzed on breast cancer risks, awareness and early detection in the over 70’s. For each question asked her reply at the end was others in that field would have a better reply because she did not want to say something that was incorrect, but if she had experience or interest in the medical field it would have shown in her replies.

The next hour and a half with the other three other guest speakers were no better. To sum the day up there is room for improvements across the board for treatment, awareness and general care, but surely they already know this? And when will we see these improvements? Well maybe next year or the year after.

I actually now understand why the NHS is in a mess.

House of Parliament Toilets.

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Brigham and Women's Hospital team: "Glad to know you"

When bombs went off near the finish line at the Boston Marathon, runners and spectators grabbed their loved ones and scrambled to get out of the way.

Joshua Kosowsky and Heidi Crim scrambled to get closer.

Joshua is Clinical Director of the Emergency Department at Brigham & Women’s Hospital in Boston. Heidi is Nursing Director. Both were sitting with me at a conference room in Maryland when the horror of Monday’s carnage entered our consciousness through texts, Twitter and emails. We had a moment of silence for the victims. Moments later Joshua and Heidi were threading their way to the exit doors, en route to the airport, back to Boston and their hospital. They would join their colleagues who were now working on 31 of the 140 people injured in the blasts. Hours later more of the Brigham team would head back to Boston, with those left behind on alert to see if and when they were needed.

For the past couple of days we’ve all been together at the Institute for Patient- and Family-Centered Care (IPFCC) seminar in Annapolis. We patient advocates are here to work with some of the best and brightest people—or at least those actively striving to be the best-- who deliver care at the nation’s hospitals. Our collective mission: to see what we can learn from each other.

Yesterday morning Joshua, Heidi and other clinicians and administrators from “The Brigham”, as it’s called, were assigned to a small work group of 15 people. There were 14 from the Brigham, plus a facilitator from the IPFCC-- and me. The Brigham team had brought along their own Senior Patient and Family Advisor, Martie Carnie (I quickly saw that the team appreciates and relies on her.) So what made me the “lucky one”, the lone non-Brigham person there? Maybe it was pure geography (I’m from Rhode Island). Whatever. I felt lucky to literally have a seat at the table with folks from one of the best hospitals in the world. As to how they’d feel about having me there, I had no clue.

We went around the table introducing ourselves. Maureen Fagan, Executive Director of Brigham's Canter for Patients and Families, set the tone—the Brigham was here for ideas on tackling a challenge: treating people who come in through the Emergency Room with the same embracing welcome they’re known for giving patients who have the advance time to plan their admission. As she concisely explained things, Maureen looked me in the eye. She used my name. I felt “seen”, and included. It encouraged me, as the session continued, to offer my two cents here and there. Joshua asked how we could make clinicians accountable when they do stuff like not wash their hands…the times it’s out of arrogance, not forgetfulness. I had some thoughts on that, too, and he seemed to listen to me. Heidi described what the Brigham “welcome” should feel like. “When you come to us, through whatever route, we need to tell you, to make you feel, that you are ours.”

Later, after more key team members had left for Boston and the rest of us found a television and could begin absorbing the monstrous images, members of her team told us what a great leader Maureen is, and what clarity she brings to their work. They told me that Joshua was really one of the

Janet Razulis & Julie Celano of The Brigham conferring

good guys. That he’d written a tremendous book to help patients navigate their care in the hospital.

Today, the “day after”, our now-smaller group gathered to pick up where we had left off. Power cords snaked from phones whose charges were depleted by the morning’s non-stop texts and emails. The team gathered around iPads to watch as their CEO answered TV  news anchors’ questions calmly and thoroughly. In a world of chaos and unpredictability, the Brigham staff here in Annapolis exuded a quiet confidence…that their team was in place, doing what it was trained to do.

We’re here at this conference looking for tools and allies to achieve a more functional, responsive and patient/family-centered culture of medical care. Yet despite its dysfunction, its imperfections (and yes here are many), there is also this stunning excellence—the culmination and embodiment of massive compassion, training, service and practice. It truly is a beautiful thing.

At its heart, the root of good medical care is compassion. As Martie, the Brigham advocate, says, “we can’t always control the outcome, but we can control the experience”.

Somehow, I think the people going into the Brigham-- yes, even those who never expected to go there and entered through the Emergency Room-- will know just what she means.

Left to right, Shelita Bailey, Lynne Blech, Maureen Fagan, Rosemary O'Malley, Kristen Koch...some of the Brigham team

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Rick Boothman: "The Dogmas of the Past Are Inadequate"

It's the kind of story you hear too often from medical insiders: the elderly patient should never have had major surgery in the first place. The poor medical care she received that caused her suffering and death was bad enough. Worse for lawyer Rick Boothman was when he found out out the surgeon who'd operated on her had been sued three dozen times before. But the tipping point for Boothman came when the hospital CEO angrily told him to just do what he'd been hired to do-- defend the hospital in the family's wrongful death claim. 

In this week's post leading up to the National Patient Safety Foundation Congress 2013 May 8-10, Boothman shares the story of his unlikely career change, what drives him to champion transparency and disclosure, and how he's inspired by the words of Abraham Lincoln. 

 

Who:  Richard C. Boothman, Chief Risk Officer, University of Michigan Health System

How many years attended Congress?  6 years (he's on the Board of Governors)

boothman@med.umich.edu

 

Pat Mastors: What brought you to patient safety in the first place? Can you share one iconic personal moment of impact/success/motivation? 

Rick Boothman: I actually “backed into” patient safety and for that reason, I probably see things differently than many.  In my former professional life, I was a trial lawyer representing Michigan and Ohio hospitals and doctors in malpractice litigation – I did that for 22 years and loved my work.  But during my entire time as a trial lawyer, two observations increasingly plagued me:  one, the enormous human cost of patient injuries not only to patients, but to caregivers I represented as well.  The damage to patients – at least someof the damage to patients, is often obvious – seriously altered and lost lives, etc., but the impact to our caregivers is something we don’t talk about very much, something we often don’t even acknowledge, and something I do not believe we understand very well. Litigation of course, exacerbates the tragedy for everyone concerned.  I was always struck by the magnitude of this problem across the board and the heartbreaking impact it had on those involved.  Second, not once in 22 years did any of my clients ever ask me what they should have learned from the cases I handled.  In fact, on several occasions, I DID raise lessons learned after cases were completed and every time, it was clear that in their view, my job was to defend cases, not wade into hospital business. 

The experience that tipped the scales for me occurred just before I left private practice.  I was representing a small community hospital in a wrongful death case that arose from bilateral [double] knee replacement surgeries on a seriously medically compromised 85-year-old woman who got septic [developed a serious infection] and lingered miserably for months until her death.  Doing even ONE knee replacement on this patient demonstrated highly questionable judgment-- she had problems more serious than knee pain-- the decision to do two replacements was completely indefensible.  When I checked the court records, I discovered that the orthopedic surgeon involved had been sued 32 times!  He was uninsured and had settled a recent case with some real estate from Northern Michigan.  In my opening letter to my client I urged the hospital to trigger the peer review provisions in its medical staff bylaws because this surgeon seemed both incompetent and reckless to me.  I received an angry call from the hospital CEO who told me that the surgeon “single-handedly kept the orthopedic service afloat”; he reminded me that I was hired to handle the medical malpractice claim, not create other issues. 

For years I saw how counterproductive litigation was-- that the “deny and defend” culture effectively inhibited the kind of accountability that was essential to improving patient safety.  Honesty isn’t just an ethical imperative-- as a practical matter, you can’t fix a problem until you first acknowledge a problem exists and you accept ownership of it. 

Having represented the University of Michigan for more than 20 years, having seen its vulnerable underside and inner workings, I knew it to be an organization with impeccable ethics filled with amazingly skilled and dedicated caregivers of all stripes.  When an opening arose in the legal office in 2001, I saw an opportunity to make a difference across a whole community of caregivers. I wanted to do something that would logically ameliorate some of the pain I saw in both patients and caregivers, and move the focus from responding defensively to patient injuries to a proactive effort to improve safety as THE gold standard for addressing the malpractice problem that plagued the community of patients and the people who care for them.  My original plan was to take two years, put the architecture in place and return to my work as a lawyer.  So much for planning, eh? 

We are all in this together.  We will only fix these problems together.  Litigation by its nature is counterproductive to that reality and I was determined to do my best to shift the focus to make sure we learn from our patients’ experiences. 

Pat Mastors: What is the most encouraging thing that’s happened in the past year in Patient Safety? The most concerning?

Rick Boothman: The most encouraging thing that I’ve observed is the decided shift and attention to these issues across the board.  Groundbreaking people like Lucian Leape and Don Berwick and Bob Wachter and Peter Pronovost and a host of others have been at it such a long time-- such a stunningly long time-- and it’s encouraging to see now much more openness, and even a sense of urgency to patient safety.  The other encouraging development is the increased attention being paid to the very fabric of our patient/provider relationships.  We must move to more of a partnership with our patients.  I hate the concept of informed consent for instance, because in most places, informed consent simply means getting a form signed.  Even when it’s done well, informed consent is consigned to special events like having a procedure or surgery done.  The quality of the conversation between caregiver and provider should be uniformly high and tailored to the patient’s needs and situation-- not relegated to a conversation to be had only when a patient is scheduled to have surgery.  I’m encouraged by the dialogue that is growing around this.  Lastly, I am encouraged by growing attention to the well-being of our health care workers of all stripes.  I believe the evidence clearly demonstrates that healthy and happy workers, people who find joy and meaning in their work, actually provide more thoughtful and safe care to our patients.  I believe we have taken our health care providers for granted for far too long and again, if we’re all in this together, we need to pay closer attention to their well-being, physical and emotional well-being. 

The most concerning thing to me is our health care community’s seeming addiction to quality and safety thresholds dictated by outside agencies.  I deeply respect the work that the Joint Commission does for instance, but at some level, don’t you think we all should be embarrassed by the fact that organizations like the Joint Commission [TJC] even exist?  We need greater ownership of these safety and quality issues.  I’m aware that for many hospitals, simply getting through their surveys is considered an accomplishment.  Thresholds set by outside agencies should represent the floor, not the goal.  I sit on the board of the Michigan Hospital Association Keystone Center’s Patient Safety Organization and reportedly, there are hospitals in Michigan that acknowledge no sentinel events [an unanticipated death or serious physical or psychological injury to a patient not related to the natural course of the patient's illness] year after year.  Amazing, isn’t it?  I suppose we should be knocking their doors down to understand and replicate what they’re doing, eh?  Accountability remains a challenge. 

Pat Mastors: What will you uniquely bring to the discussion at the Congress?

Rick Boothman: Being not grounded in the old status quo, I think I can bring a fresh set of eyes and a perspective that others might not have.  I can question why we do what we do easier than someone whose very identity is tied to their roles as established in the status quo.  One of the most important quotes that resonates with me are Abraham Lincoln’s words to the Congress in 1862 when he said, "The dogmas of the quiet past, are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise-- with the occasion.  As our case is new, so we must think anew, and act anew.  We must disenthrall ourselves, and then we shall save our country.“   I am impressed constantly by the level to which we are too invested in the status quo.  As Lincoln said so eloquently, we MUST disenthrall ourselves and think anew and act anew because our challenges are new. 

Patience is NOT a virtue when people’s lives are at stake.  We are far too patient with ourselves.  We are far too embedded in the old ways.  We need a greater sense of urgency around efforts to improve.  

Pat Mastors: Where would you like to see more energy focused?

Rick Boothman: I would like to see greater efforts to understand how we create perverse incentives that operate at cross-purposes to our overall goals.  Fee-for-service reimbursement predictably favors care delivery systems and medical judgment that is wasteful, for instance.  Certain professional compensation models foreseeably encourage some caregivers to cut corners.  I would guess, for instance, that no hospital root cause analysis would be robust enough to consider listing the manner in which we compensate surgeons as THE root cause for why some surgeons think it’s acceptable to have two cases proceeding at the same time in two different operating rooms.  We need to be more thoughtful about how incentives drive behaviors that put patients at risk or use valuable resources in meaningless ways.  I would also love to see far greater emphasis on the huge component of our population whose health care needs are not served at all, or are grossly underserved.  It’s immoral that in a country as wealthy and gifted as ours we have kids who never see a pediatrician. 

The University of Michigan Health System's open and honest approach to patient injuries, patient safety and claims has been featured on National Public Radio's Weekend Edition with Scott Simon, All Things Considered, and Marketplace, the New England Journal of Medicine, CBS News, CNN, MSNBC, the New York Times, the Wall Street Journal and many other media outlets. In 2005, Boothman advised then-Senators Clinton and Obama in the formulation and introduction of their MEDiC Act.

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Tea and Cake

Yesterday I asked the nurse who administered the first cycle of chemotherapy if I could see my notes. This nurse is a jolly soul with a sweet disposition. When doing her rounds she makes sure everyone is comfortable and takes her time to log down everything. That’s why I asked her if she had logged the issue with my arm and the FEC treatment I was on. She straight away went to the relevant page within my medical notes showing me what she had written for that first cycle. She read back what she had written to both me and my husband. I asked the nurse so why did the registrar say nothing was written down? Why did I have to go through all that unnecessary pain? With a tilted head and a reassuring tone she said I don’t know. 

She personally understood why I had asked for the referral and was apologetic which something no-one else has done since the damage was done. Her reply, no patient should go through unnecessary pain or stress the treatment itself is bad enough. We both agreed it all fell on communication with my oncology team. Then we spoke about my cardio results and if it had been explained properly. She mentioned the 57% was just within the margins of having the Herceptin. That if I have any further chest pains to ring my oncology team and request an emergency appointment for imaging to be repeated sooner.

This is the first time someone has taken the time to properly explain my results with my medical records present. There are still questions that are unanswered like am I now in remission or not, but for now until I hear from the Royal Marsden there is nothing more I can do.

On a more cheery note I had a lovely time in central London today. I went to a Daniel Sandler make-up seminar and came away with a goody bag. And as a bonus I had Tea and cake at the Cavendish Hotel with a bunch of lovely ladies. The breast cancer lottery maybe complicated, but watching a bunch of women with beaming smiles only makes me more determined… too have fun.

The above ladies have/are battling Bowel Cancer and fingers crossed will be doing a calendar to raise awareness. Gina Potter bottom center is a lady I met via my FB account. She traveled to London to be Daniel Sandlers make-up model for the day. The Picture was taken by the fantastic Stephen Potter, Gina husband.

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Finally....

It only took three weeks and a phone call to remind my BC nurse I had not changed my mind about the referral to the Royal Marsden, but finally she found the time to phone me back to say a letter had been sent that day. Her excuse was a recording had been left in a rack somewhere and had been overlooked. To me it dissolves any doubt I may have felt about the decision to move away from the hospitals treating me. Yes I understand the fact she and the team have other patients, but that is not my problem. My concerns are strictly for me and my wellbeing.

I feel a bit like the Lion in Wizard of Oz…I have a roar, but no-one is listening. It is no good when people see you more like a bag puss that is easily muffled, but when you put my back up against the wall my claws come out.

I’ve been told so many good things about the Royal Marsden I know I’m in safe hands.  

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Patty Skolnik: In Her Own Words

In the weeks leading up to and during  the National Patient Safety Foundation Congress 2013 May 8-10, I'll be guest-blogging for the NPSF Congress website and cross-posting here. (this post should be on their site as early as tomorrow). I'm excited to be profiling patient safety champions and programs, using their own words to acquaint the broader community with their stories, efforts and successes. There are so many of you out there doing great work; I'd love to know all of you better, and I know the world would be as inspired by your work as I am! Once the Congress is over, I hope to continue with these profiles on this blog. Please share as you see fit to help connect the patient safety universe.

Who: Patty Skolnik

Executive Director, Citizens for Patient Safety, Denver, CO

Member, board of Governors, NPSF since May 2012

CitizensforPatientSafety.org

Patty@CitizensForPatientSafety.org

Twitter: @SkolnikPatty

Pat: What brought you to patient safety in the first place?

Patty: The death of our only child, Michael, in June 2004. Michael was 22 years old and was going to college when he passed out one day. A neurosurgeon looking at test results of Michael’s brain, said a cyst was blocking his cerebral fluid and causing his brain to swell to life-threatening levels. He told us Michael needed surgery within 48 hours.

I checked out the profile of the neurosurgeon on the website of the Colorado Board of Medical Examiners. Nothing unusual came up. What I didn’t have any clue about was that this neurosurgeon was being sued for the death of another patient in Atlanta and had operated on the wrong disc. He had also operated on and disabled another patient in Atlanta.

After my husband David and I had left the hospital for the night, the neurosurgeon got a signature from Michael—who was on heavy medication-- on a consent form to do brain surgery. When we got back to the hospital the next morning, Michael was already in the operating room. The procedure was supposed to take three hours. Michael was wheeled out six and a half hours later.

They didn’t find any cyst. But we soon saw that six hours rooting around in our son’s brain had caused tremendous damage. Michael lost the ability to walk, speak, eat, became partially blind. He was paralyzed except for spastic movement of his right arm and hand. Over months in the ICU he suffered from hallucinations, blood clots and many infections. It was absolute torture for him. Our son died of massive organ failure, 32 months after the surgery. We were devastated. But we had vowed to Michael, who’d been going to nursing school before this all began and had loved the field, that we would leave health care better off than we found it. So we started Citizens for Patient Safety, and I now teach and present to groups around the world. I’m trying to bring that mission to life every day.

Can you share an iconic moment of impact, success or motivation?

Patty: The realization that patients and families like ours had no meaningful access to important information about their doctors made us set out to change the law. We wanted physicians’ malpractice history to be available in a quick online search.

We had to bring some reluctant groups on board…the Colorado Medical Society, the state’s largest malpractice underwriter, and on both sides of the political aisle. But I met with them, said “I’m a mom, could you please watch a short video about our son” (it was a segment from the Today Show). Everyone eventually came on board. We had to do it, to create a resource every family might need one day.

The governor signed The Michael Skolnik Medical Transparency Act in 2007. David and I then lobbied for two subsequent patient safety bills that also passed. Another one is pending. Today I do advocacy training around the world.

Pat: What is the most encouraging thing that’s happened in the past year in patient safety?

Patty: For me, shared decision-making and informed consent are the foundation of patient safety. Patients need to be part of the team, the team that has to live with the outcome. I had been doing consumer training, and still do that. But in the past year the door to the provider world is opening up wider to patient advocates. More and more I’m working hand in hand with medical professionals, even participating in grand rounds in hospitals. In August of last year I presented to the board of the New York State Association of Hospital Trustees, nearly 500 decision-makers in health care. The key to having an impact is in how we as patient advocate leaders present ourselves. Not to “shame and blame” and point a finger, but rather by asking what the problems are, and how we can resolve them together.

Pat: What’s the most concerning thing about patient safety in the past year?

Patty: That people will lose hope. There is so much to do. But as Winston Churchill said, “Never, never, never give up”. We had that quote posted next to Michael’s bed. Progress in patient safety is coming slowly, but we have to keep going. The other thing I worry about is that we veterans who have been working in patient advocacy have a lot of wisdom and experience. We’ve learned how to “play in the sand box” with others. But we have to mentor younger people, to teach them all we’ve learned…to pass the torch to the next generation, so the improvement movement keeps going.

Pat: What unique skill will you bring to the NPSF 2013 Congress?

Patty: I’m a networker. I put the right people together. Sometimes they may seem like strange bedfellows, but there are common passions and complementary skills or capabilities. I’ve been able to do this several times. I think we all have to look for and assist others who can further our mission.

Pat: Where would you like to see more energy focused?

Patty: I’d like to see more patient and family representation at conferences that are talking about patient safety. Many advocates who would like to attend don’t have the employer support or financial resources to participate. So I’m hoping there will be ways to work on this. 

Parts of this profile are excerpted from my forthcoming book, Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives.

NOTE: Patty Skolnik is also among a handful of patient safety advocates (including Helen Haskell, Rosemary Gibson and others) whose collaboration with Medstar Health is being featured in the forthcoming documentary film: Breaking the Wall of Silence. Film production funds were just successfully raised on Kickstarter.

Know a patient safety/engagement "Island of Excellence"  that deserves recognition? Please suggest in comments.

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Game, Set and Bloody Match!

Ok so I find myself in a position do I pick up the phone or do I wait.

I’m in a stale mate situation with Mr L holding the cards. I’ve received no confirmation letter or communication with my BC nurse reassuring me of the referral I requested to the Royal Marsden.

When I demanded to be transferred three weeks ago via my BC nurse I was told it would be discussed and a letter sent, but once I put the phone down I felt the tennis match between these two hospitals with me as the bloody ball wasn’t quite over. 

  

In a last ditch attempt I phone my BC nurse up, but hear a phone message saying she’s on annual leave until the 7^th. My next infusion of Herceptin is booked for the 12^th, so this set could be won by my team.

If I was a difficult patient in any shape or form I could understand being ignored, but my request is a sensible one. Place me under one roof with one team and the situation will be resolved. The fact certain words and actions have taken place in front of me has left me disillusioned about the standard of care I’m receiving. I’m the patient, I’m the one being prodded and poked and I will have my way.

Letter from Plastics:

Dear Dr S,

RE: Ms Sarah Mendoza –DOB: 29/07/1970 NHS Number: *** *** ****

      18 M*** **** ****, Northolt, Middx, UB5 5DR

I reviewed this delightful lady in Plastic Surgery clinic today who underwent left mastectomy and LD/implant reconstruction in November 2009 and capsulectomy in 2011. She had recurrent left breast cancer in July 2012 and underwent chemotherapy and radiotherapy which was completed approximately 2 weeks ago. On examination today her reconstructed left breast was soft upon palpation and there were no signs of capsular contracture.

We shall see her again in 3 months time for review or earlier should the need arise, and we will keep you informed of her progress.

Kind regards and best wishes

Yours sincerely

Mr D

See I am not a difficult patient…

Letter from Oncology

Dear Dr S,

RE: Ms Sarah Mendoza –DOB: 29/07/1970 NHS Number: *** *** ****

      18 M*** **** ****, Northolt, Middx, UB5 5DR

I reviewed Sarah in Dr L Breast oncology clinic today when she attended prior to cycle one of adjuvant Herceptin.

Her baseline ejection fraction on a transthoracic echocardiogram was 57% which is within our treatment tolerances. I have made her an appointment to be seen on the 18^thJune 2013 preceded by a transthoracic echocardiogram on week commencing 3^rdJune. All being well, she will continue on Herceptin on a three weekly basis in the interim.

Yours sincerely

Dr P

Being a tennis ball between two hospitals is not a brilliant position to be placed in. The issues you face with the odd grunt and grown is supposed to weaken your disposition, but I’m a Yorkshire women who wants her referral with zero excuses.

Oh and that letter I don’t understand the 57% bit, except that it is acceptable…. I hope!

My daughter playing the piano with her egg band.. I did this for a competition to win a brand new spanking £1000 camera from Jessops.. sadly we didn't win

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Who is Your Caregiving Hero?

When my brother was diagnosed three years ago with a rare Klatskin tumor (cancer of the bile duct), the prognosis was pretty bad. Maybe two years to live, the doctors told him and his stunned family. Just a week before, he'd been eating Christmas dinner with all of us, looking a little punky, maybe, but gobbling up shrimp cocktail and prime rib. How could it be?

Did I mention that was three years ago? Within months of surgery and intense treatment, my brother was back to work, and soon after, back to his pre-illness weight. He’s set to walk his gorgeous daughter down the aisle at her wedding this August. Regardless of what uncertainties the future may hold, there have already been more unexpected blessings than we could have hoped for.

But I remember back then looking up his diagnosis, and reading message boards from others experiencing this disease. The news was grim. Their stories were depressing. What I have learned since then, through my patient safety work, is that many of those who do really well—those who occupy the “upper outlier” curve on a scale of possible outcomes for someone with a bad disease-- go on with their lives. They tend to stop writing.

That’s why I’m taking a moment here to recognize the “miracles” of recovery, of lives saved when doubts were strongest, and to celebrate the people who stepped up and took on the responsibility and opportunity to be a caregiver. Each of you inspires others to have hope.

At his request, I’m happy to share here the story of Cameron Von St. James, a Minnesota man who stepped up when his young wife, the mother of their newborn baby girl, received a devastating cancer diagnosis. Congrats, Heather, for your strength and determination, and to you, Cameron, for finding a strength you never knew you had.

Who are your care giving heroes? Who made all the difference to your recovery?

Cameron's story:  

In the fall of 2005, at 36 years old, my wife Heather received a devastating diagnosis of malignant pleural mesothelioma, a rare and deadly cancer of the lining of the lung caused by exposure to asbestos. Years before, her dad had worked in construction and handled asbestos a lot, tracking it home to his family on his gloves, boots and coat. No one knew it was dangerous back then. It can take decades for the disease to develop.

But somehow, here we were. On the day we got this stunning news, Lily, our first and only child, was just three months old. We were supposed to be getting ready for her first Christmas. We’d been excitedly planning all the ways we could make it particularly special for our new little daughter. But instead of hanging lights and picking out a tree, we were confronted with selecting a team to entrust with Heather’s life. Without immediate intervention by a specialist, she was given 15 months to live.

After explaining mesothelioma, the doctor laid out our treatment choices. One was a local university hospital, an excellent regional facility that unfortunately had no mesothelioma program, or Dr. David Sugarbaker, a mesothelioma specialist in Boston. As I waited for my shocked and terrified wife to respond, I realized that she needed my help.  She was looking at me pleadingly, and I knew I needed to take charge for her. I looked up at the doctor and told him to get us to Boston.

Unprepared, ill-equipped and uncertain, I became a cancer caregiver that day, thrust into a long, difficult journey to beat Heather’s cancer.

The following two months were chaotic. Heather was unable to work as she began the full time job of fighting cancer. My days were consumed by taking care of my wife and daughter and managing medical appointments. Overwhelmed, I was only able to work part-time.

More than once I found myself crying on the kitchen floor, out of sight and earshot of those who needed me, wishing it would all just go away. I was careful not to let Heather see my terror—my fear of losing her to cancer, becoming a destitute single father, and raising a beautiful daughter who would never know her mother. The burden of bearing these fears in private—of being strong for Heather—was made no easier by knowing it was the only choice.

Family, friends and sometimes even strangers offered financial help and words of comfort. I can never thank all of them enough. If any cancer caregiver asks me for advice, I tell them to accept all offers of help. The burden is lighter when you don’t carry it alone. Take advantage of every resource, and don’t be too proud to ask for help.  There is no reason that you should face this challenge alone.  

Mesothelioma surgery, radiation, chemotherapy and the support of friends and family helped Heather beat the odds; she has now been cancer-free for six years. Although it took a while for life to return to normal, our battle with cancer taught me valuable lessons. I now fully understand how precious our time is.  

Taking care of someone with cancer is probably the toughest challenge you will face. You will have days filled with uncertainty and anxiety. You’ll get sad and angry. Know it’s ok to have bad days and fall short of your best. But today, I know how important it is to never, ever give up hope.

Two years into our ordeal, I was working full-time, taking care of Heather and Lily, and obtaining an education in information technology. My experience as a caregiver gave me the skills and the courage I needed to pursue my dream of returning to school. I eventually graduated with honors, and was given the privilege of speaking at the ceremony. In my graduation speech, I told the crowd how I would have never dreamed this could happen when first faced with Heather’s mesothelioma. My wife’s courage inspired me and taught me that if we keep hope alive, and trust our abilities, we can accomplish anything.
 

Heather, Lily & Cameron today

Thank you, Cameron, Heather and Lily, for a story that also coincides with national Mesothelioma Awareness Week, April 1-7.

And to that I would share a thought borrowed from Eleanor Roosevelt:

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."

 

Give a shout-out to caregivers everywhere! Give others inspiration!

 

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