Life Isn't so Bad... is it?

A lot of the time I have a beaming smile across my face, but of late that smile has dipped a little, only because I had to have yet another aspiration done on yet another cyst. It means I have to wait another week for the medical board meeting, but fingers crossed no nasties are found.

In my own way of dealing with these glitches I have been going through the autograph collection which is mounting up. It is time to start off loading some of these autographs to auction charities. I have developed a separate blog which is called ‘To Sophia... Collection’ and added the film footage from some of the premieres we have attended. This in turn shows we are meeting Tom Cruise and various other stars, despite people being slightly concerned about my whole approach to my diagnosis. To me doing this hobby with Sophia has added excitement and a way of helping others.

I have also become a Nana at the age of forty-one, so life isn’t treating me so bad is it....

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Getting in on the "Action Plan"

There's an old Dutch saying my mother often shared: "No, you've got. Yes, you can get." So when I got word the Department of Health and Human Services was soliciting feedback on its Action Plan to Prevent Healthcare-Associated Infections, I channeled my eternal optimist to ask for a "yes" on stuff I believe matters a lot to patients. The letter below goes off to HHS by today's deadline (there's no Dutch saying for "getting important stuff done early"). There's also a bunch more I would say, but my college journalism professor had a saying, too: "Keep it short".

Your thoughts are welcome.

June 25, 2012

Department of Health and Human Services (HHS)

Office of Healthcare Quality

200 Independence Ave., SW., Room 711G

Washington, DC 20201

Attention: Draft National HAI AP

To whom it May Concern:

As the consumer representative since 2008 on the RI Department of Health’s Hospital-Acquired Infections (HAI) Subcommittee, an advisor to the CMS Partnership for Patients Patient-Family Engagement Network convened in May 2012, a person who lost her father to complications of an HAI (and worked to help pass two Rhode Island state laws enhancing patient safety), and an ardent supporter of patient engagement as a driver of quality improvement in health care, I am writing to provide expanded feedback on the draft National Action Plan to Prevent Healthcare-Associated Infections: Roadmap to Elimination (HAI AP).

I’m pleased that the HAI Subcommittee on which I serve has conveyed to you by separate correspondence (to which my signature is affixed) an endorsement of many of HHS’s HAI reduction initiatives, as well as areas of continuing challenge that would benefit from your office’s expedited direction and support. Areas where I feel your support and guidance are particularly needed include the following:

1) Resolve inconsistencies in the guidelines promulgated by the various federal agencies that govern or direct HAI reporting. Currently, the lack of clear mandates and guidelines leaves many if not most hospitals reporting the minimum required. Rhode Island has in fact gone beyond federally mandated reporting requirements and begun to voluntarily gather data on CDI (Clostridium difficile infections), which you are likely aware are “at their highest levels in history”, according to the CDC.[1]While RI should be commended for its pioneering stance in this regard, we on the Subcommittee continue to struggle with which data guidelines to use (we’ve spent more than a year just determining how “hospital-acquired” is defined).  Absent clear guidance, there is also concern that the resources we’re devoting to this effort will be moot once new federal directives are finally announced. These factors drag out the process, and compromise our capacity to deliver information that is meaningful and actionable to the public. The result is that most consumers remain unaware of the risks of HAI in healthcare settings, and so are unable to proactively partner in their care. This leaves nearly 300 people still dying each day in hospitals from HAIs that might have been prevented. 

2) Patient engagement is critical. In today’s complex, multitasking medical environment, human error is unavoidable. Patients and their advocates deserve care that acknowledges this truth. The increased incidence of C-diff infection, and of pan-resistant MDROs (infections resistant to all known antibiotic therapies) underscore the need for a “common mental model” of HAI prevention. The public must understand the risks, symptoms, course of disease, and behaviors s/he can undertake to mitigate the risk of contracting an HAI. (For instance, hospitalized patients might be told that to avoid C-diff infection they should never touch mouth or nose with unclean hands). Rhode Island has passed a law requiring distribution of such information to patients upon admission, or as soon after admission as possible (R.I.G.L. Chapter 23‐17.17). As we move toward implementation, this initiative may serve as a model for other states.

3) More resources are needed to research, prevent and combat HAIs in medical settings, reflecting the critical nature of this public health threat. I’ve become increasingly alarmed by comments at our Subcommittee meetings that new regulatory mandates divert time and attention from the patient’s bedside (“we’re spending too much time doing data entry”), and that in revenue-challenged times, infection control must fight a losing battle for resources. This concern is reflected in publications and medical blogs elsewhere in the nation. Your leadership in ensuring these resources are available is critical. “High tech” care is no substitute for “high-touch” care.

4) Take meaningful steps to synthesize the input of patients and families on patient engagement strategies. Though patient and family engagement is widely touted as a key goal of CMS and HHS to improve the quality of care, a true embracing of the patient/family perspective has yet to manifest through any federal entity. Case in point: I was among a group of patient advocates asked to participate in the kickoff meeting of the PfP Hospital Engagement Network, scheduled for late May 2012 in Washington, DC. Days before the event, we received an email that the meeting was cancelled, due to “budgetary restrictions on federal travel”. Instead, a two-hour webinar took its place, during which fifteen minutes was allotted to advocate input. Those of us listening via our computers (instead of our phones) found ourselves technically shut out of speaking up even during those fifteen minutes. Though the public relations firm handling this project has committed to “do better” (based on poor feedback from the advocate community), the event at the very least delayed the onset of any next steps that might have been taken toward helping patients. The support of HHS in getting this agenda on track (perhaps restoring funding for the gathering of PFE advocates) would, I believe, serve the public good.

History tells us that against strong lobbying interests, only public demand can fuel the engine of culture change. Many of us in the advocate community have innovative ideas on how to accomplish this. Personally, I’ve offered to help the PfP PFE network develop and deploy patient engagement strategies that utilize social media, the talents and passions of new college graduates, and a new patient-centric device that empowers the patient with tools for hand hygiene, communication and the management of care transitions. Whether it’s these or other strategies that ultimately are adopted to foster patient engagement, I’m hopeful we can move quickly, as every day that passes is a lost opportunity to save someone’s family member from avoidable medical harm.

I appreciate your consideration of this input, and would be pleased to provide further detail. Thank you for your work toward a more responsive, holistic and satisfactory health care system.

Sincerely,

Pat Mastors

Patient Advocate, PfP PFE Network contributor, Member, Rhode Island HAI Subcommittee, Member, Consumers Union Safe Patient Project, Participant, IHI Annual Forum, President and CEO, Pear Health LLC

www.thepatientpod.com

---

[1]For the report, researchers looked at data from the Emerging Infections Program, NHSN, and c diff prevention programs in Illinois, Massachusetts, and New York. Key findings include:

·             94% of all CDIs were related to various precedent and concurrent health-care exposures

·             Of these patients, 75% had CDI onset outside of a hospital.

·             Some cases occurred in patients who were exposed to multiple settings including nursing homes and hospitals.

·             Mortality from CDI increased from 3,000 deaths per year during 1999–2000 to 14,000 during 2006–2007; over 90% of these cases were in patients aged 65 or older.

·             Hospital-onset CDI are estimated to cost $5,042–$7,179 per case.

·             Much of the recent increase in the incidence and mortality of CDIs is attributed to the emergence and spread of a hypervirulent, resistant strain of C. difficile.

(Sources: The Advisory Board Daily Briefing, http://advisory.com, March 7, 2012; Centers for Disease Control and Prevention, http://www.cdc.gov, March 6, 2012)

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A broken heart; an award-winning video

Emily-Ann and her Dad

In August 2008, the week before Emily-Ann Croke of Riverside, RI started freshman year at Providence College, she said goodbye to her father.

Forever.

He'd spent the last days of his life in a hospital intensive care unit. He'd come in to the hospital for treatment of esophageal cancer. Emily and her mom were stunned when he died six weeks later of sepsis from multiple infections. He was 48.

Soon after, Emily ended up testifying for passage of a new patient safety law in Rhode Island. Otherwise jaded lawmakers squirmed uncomfortably, as an only child recounted her last memories of the most important man in her life: 

"... there were also so many absolutely repulsive things that I witnessed while my father was in the hospital that not only caused the spread of these diseases, but should not have even occurred under any circumstance. For example, while fighting C-diff [infection], which resides in the colon, the hospital staff gave him an enema. When my mom later walked into the room there was human feces all over the floor, which no one bothered to clean up. My mom ended up cleaning the floor, which not only presented a threat to her and to other sick patients, but also to everyday visitors and staff..."

Emily was at the State House, testifying, at my urging. In fact, I'd lost my own father to complications of a C-diff infection two years before she lost her father. (Sadly, there are more of us than you might think.) 

The law passed. Emily went on with her college life. But the more she read about hospital-acquired infection (HAIs), the more alarmed she became...both by the prevalence of the problem (99,000 people a year die from HAIs), and the fact that most people are clueless about the risk. She wanted to do something.

She contacted me again a few months ago. Could I help put her in touch with some people to interview for a film project on hospital-acquired infections?

Last month, the Providence College Film Festival screened a dozen student-produced films. I watched, alongside Emily, her mom and a family friend. The last video presented, "A Silent Epidemic", was shot, written, produced and edited by Emily-Ann Croke.

Emily's film won first place. The judges swarmed her afterward. This is important...people need to see it...you should enter it in other film festivals...

Here it is: a daughter's homage to her father, a heads-up for you, and a fine piece of video on its own. Watch, and then Tweet, re-post and share it...you can help Emily make a difference.

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Blogs Are An Educative Tool, Not Intrusive!

I went onto my FB page today catching up with various postings. I’d had a night out with a dear friend in Camden Town and he had posted pictures up. The first posting I saw on my home page was from Doug. Poor 'Doug' had gone through the rounds with his treatment. He was facing a setback on treatment due to his mastectomy wound getting infected. On his last post on FB telling others to check his latest blog posting out. I noted a individual had said they found his blog too personal and Intrusive. Instantly I thought what the hell is this individual on. Then I had to think back how someone had tried to say the same thing to me about my blog.

I understand others would sooner keep their journey private with breast cancer, but then 'Life In Transition' another blog posting came up later on about the issues with Tamoxifen that are never discussed until things go wrong. This person is now facing the possibility of  endometrial cancer.

Blogs are an important tool within cancer land because they are informative. I personally like this individual did not know Tamoxifen can cause another serious cancer. Just like I have never met a man with breast cancer. By these individuals opening up the door of their very personal journeys with cancer they are filling in gaps. And those very gaps educate all of us on treatment and the processes involved. It gives people the tools to question our treatment and move forward. Every time I walk into my Gyno office I sling questions at them. Just like when I meet my breast cancer nurse I will ask her about Tamoxifen and get her opinion. To say a blog is intrusive and too personal to me is wrong. How else are we to build up the confidence in the system that treats us unless we educate ourselves to say the  word WHY? Why do I need this treatment? Why is there not alternatives?  

I have personally been in the system too long to know do not except all straight away. The shock of receiving the diagnosis of cancer sends a person into over drive and panic. You believe that what you are told is your only alternative. Well I have learnt NO! Sometimes it is better to step back and say why? Then collect a heap of info from the net such as these blogs and slam it at your  physician.

As my husband said Sarah is on the ball she won’t let a trick slip because it is her body, her life.

To sum it up if I don't step up and show an interest in my treatment, who will?

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Ultra Sound Department V's DIY Breastlight

My six month oncology appointment has finally arrived and I have been booked in for a ultra sound. After the lovely registrar read my notes and listened to me getting straight to the point. Point one being my right breast is a very naughty breast. Point two last night I found a pea size lump on the left side. The registrar checked both my imposter and my right breast out. And decided he wanted me to have an ultra sound as a precautionary measure. The pea size lump he said may well possibly be a lymph node, but just in case he wanted it confirmed. As for my naughty right breast he said he wants the same thing done to find out if the pain is down to the return of my cyst, which to me makes sense. He found my breast to be very lumpy especially round the lumpectomy scar.

In conversation whilst the registrar was preparing the slip of paper to be taken to the ultra sound department, I said I bet you have never met a bubbly patient like me. He explained it was nice to have a patient who was staying calm. My reply was hey no good fretting over spilt milk. Besides it is better I get straight to the point, so you can sort it out.

On returning home and checking various articles I read something about a breastlight. With cancer comes the nagging question, are they missing something? And there are many scrupulous companies who have latched onto this anxiety. To some they think they are doing breast cancer patients a service to ease their anxiety created by fear, but I always question their ultimate aim and that is to part people from their money.

I had heard about the breast light before and how women are being encouraged to try it out. And I must admit spending £84.99 is tempting just to see what my remaining breast looks like under a red light. Yet another part of me is saying what is the point, after all if this new gadget was reliable why haven’t GP’s been issues them as well as hospitals. Maybe it is because its value is selling it to vulnerable women rather than keeping it as a medical implement strictly used in clinics.

What is the breast light?

The Breastlight advertises itself as a new health and wellbeing product for women. It can be used as a tool to help women notice any changes in their breasts over a period of time.
Apparently with the Breastlight you get a new view of your breasts. The Breastlight shines a harmless red light through the breast tissue so that you can see some of the details inside. That way you can get to know what’s normal for you, spot any changes and hopefully ease anxiety and build confidence.

The fact that UK Boots chemist is selling the Breastlight only backs it as a reliable tool against the fight against breast cancer, but again it is all about pound signs.

But I want to do my own evaluation/ research and if anyone reads this blog and has used the Breastlight please leave a response. I know at the end of the day there would be women just as curious as I about this gadget and how it truly fairs in breast cancer land.

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Living, Laughing and Breast Cancer

My six month oncology appointment is on the 25th and yes I don't deny I am nervous.Yet as normal I have kept myself busy by learning new tricks as I say. Although my house is still needing a good lick of paint on fresh plaster I have personally decided enough is enough. I have sat on my arse and let my husband clean up the rest of the house. I had rushed to complete two rooms and my husband thought what I did was alright. The perfectionist in me has said you know what the only way this man will learn is to treat him like he treats me. And I have had fun doing exactly that. A friend put out a request for a place to do a short film in, so I said he could use my home. It was three days of laughter and mayhem, but hey that is the life I love. My kitchen was a massacre scene from a horror movie, but it was fun. Do not get me wrong my husband had fun also whilst puffing out his plumage, and I had to clean up the mess after filming. But it was something other than my husbands company and a ticking clock.

Me holding a boom and the cameraman.

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STICK YOUR TONGUE OUT AGAINST CANCER!

Sharing the frustrations of treatment and the setbacks it creates, can lead to an outlet with humorous consequences leading to a defiant united backlash against cancer. Those affected by breast cancer hate the fact our journey is totally focused on breasts rather than the individual. Some of us who are outspoken hate the titillation media/others create to make breast cancer more palatable/saleable. After all we all know breast cancer means big bucks to certain companies. Yet as a united community that is on various forums we still find the time to show how we want cancer to be dealt with. STICK YOUR TONGUE OUT AGAINST CANCER!

Image taken at the Dark Shadows premiere..
Johnny Depp signed the poster I painted.

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