Another Cancer Viral Video.. or Not!

The last four days have been an emotional roller coaster for me. The side effects from the chemotherapy have left me rather drained, but the outburst of comments from doing the video have kept me smiling. I have always stood by the fact music can lead to people looking at their personal issues with a new found prospective. The shadow that clouded their every move can receive a sharp boot with a defiant smile as its replacement.

‘Our interpretation within its lyrics as helped people view the song from a different angle. Before the video had been done the song was like any other song easily forgotten.’

That was the words from a complete stranger who had said they thought ‘Try’ from P!nks new album had more of a link to the journey they was on until now. Apparently from now on when hearing that song it will be heard in a whole new light. Well to me if it raises awareness to the internal struggle that breast cancer or any seriously ill parent faces when facing their child’s questions then Hooorahhhh!

My reasoning for doing this video is easily explained. I wanted to highlight the day in day out torment parents are facing with breast cancer. While it is seen as my young daughter waving that pink ribbon high with a smile. That is what you want to see, what society wants a cancer family to look like. Please everyone note that I am in a flimsy white gown with zero protection from the cold. That coldness and isolation is something never expressed on a viral cancer video. Lukas had gone in hunt of a location away from people so it would show the isolation. Cancer patients and their family/friends are supposed to be full of smiles and fists in the air, but that is not the reality I walk. Our children, family and friends know the truth. They hear us crying at night, they experience the anger and frustration; they go to their beds with the same isolation of the unknown. And it is they that face the aftermath of our journey.

To me the system that should be supporting us is sadly failing on more than one level. Personally I have not even received a phone call to ask how my treatment is going from my breast cancer team. The only contact I now have is with the Chemotherapy unit.

I have given up seeing anyone from the big E hospital because as long as they have my bloods what is the point. 

My young daughter is receiving support from her school, but I had to chase that support just in case issues came about. The words of reassurance given at the beginning by my team never came into play. I am just another number that sadly could fade away if I was silenced. Enhance our involvement in this video.... 

Quote

See, here's the bloody, bloody truth 
You will hurt and you will lose
I've got scars you won't believe
Wear them proudly on my sleeve
I hope you'll have the sense to know
That sadness comes and sadness goes
Love so hard and play life loud
It's the only thing to give a damn about

Personally I hope P!nk can back what we have done because Sophia is a fan of her music…. And these words are motivation to keep looking ahead..

This Video

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Sharing Breast Cancer Awareness With a Difference

A friend of mine approached me two weeks ago. He said Sarah I have this song and I want you to hear it. Well I instantly burst into tears because the lyrics were so moving. He asked if I would like to do a video with Sophia using this music. Now Lukas my friend wanted this video to be about awareness not pity. And he did not want people getting upset just in case he got it wrong.

To me the words explained the journey of not just cancer, but life itself. As a parents we spend most our time protecting our children. teaching them the skills to move on, but sometimes those very children become the carers without even realizing it. The video is about a mum wanting her child not to worry about illness, but the hidden reality is we just don't know what is waiting around that corner. 

On the 18^th November Lukas arranged a make-up artist Cee-Cee who filled my crevices. Then we went in search of a location the first one was water logged to poor Lukas annoyance because he did not want me out in the cold too long. The next location for the shoot had too many houses in the background and we wanted it to be PVT. Finally after 30 minutes of running round we settled on a location that Lukas had used before. I felt like a total idiot walking down in a white evening gown at 12 in the afternoon but hey…

The ground was still sodden and the white gown had a ring of mud round the base within 1 hour of filming. All was required from me was to lip sync the words. I had two weeks to learn them because of the timing with Chemotherapy. This was my decision because I did not know how my next cycle would go and the weather was changing fast. I and Sophia are not very tuneful in fact I’m a cat so I was happy to lip sync.

Three hours felt like five minutes it passed so fast, but Sophia had a marvellous time with the pink ribbon wand. Ricky another friend who was there kept crying because he could relate to the treatment I was on. The words say it all for me…

Ricky and Cee-Cee thank you for giving your time on such a special project xxx

Lukas I love ya! Because you are a very talented young man with a dream and the comments left on this video and on my FB page say it all xxx

MUsic from P!nks latest album an un-offical music video with credit to P!nk

And here is the Video.. please have tissues ready..

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My Body, My Voice And 100% My Damn Choice!

Last week I read a posting on my FB page from Nancy Point’s blog. The posting was all about the decision of wearing or covering our heads or not during chemotherapy treatment.

I respect why other women feel the need to go down the route of wearing wigs, but people should also respect that some of us are not interested in wigs. Personally I just don’t feel wearing a wig will help me in any way. In fact I know the wig would end up in the bin. Just like the mastectomy bra's and swimming costumes that I found old fashioned in design.

This particular conversation I have noticed keeps cropping up. And some people I know feel by leaving my head bare I am drawing attention to something that should remain private. That the pity me badge was firmly fixed to my chest and it makes people uncomfortable, but what about my comfort? And there reply, but it means no-one knows you have cancer. Apparently by leaving my head bare people will gawp and whisper, but that just proves what sad lives they lead if they even have time to talk nonsense... 

Is the embarrassment so hard to bare?

The breast cancer lottery is not just about cancer, but how those receiving treatment for cancer look for reassurance or acceptance within their peer groups. We are vulnerable already, so the slightest comment of disapproval can lead to a door firmly slammed shut.  

If I was bald with tattoos and a nose piecing no-one would give a rat’s arse, but because I am seen as a so called “NORMAL” individual I should behave accordingly to the image they would like to be in contact with. Yes I cover my head when approaching Sophia’s school because I do not want her to be bullied, but I personally feel I am being bullied.

For crying out loud it is my body, my life, my choice on how I deal with the side effects of chemotherapy. I find my journey and how others “THINK” I should deal with this temporary side effect quite selfish. The pressure applied to fit into a specific jigsaw when I know I don’t fit is tremendous, but I will not be swayed. In other words you know where the door is…..

My bald head is not important to me getting past the treatment is. People should stop looking at the side effects of the treatment as something to blush and feel shame about, but more being apart of my damn survival. 

The hair loss is temporary, the scars I carry are not. It is all about choice not pity to why I do what I do. I personally do not hide the reality of cancer because why should I? It is there and I don’t have an issue with it.

My body, my voice and 100% my damn choice.

To me by pressuring a person into believing covering is the best option is a pathetic excuse due to society’s visual pressures of acceptance. I was always a defiant rebel who chose the easy route when it came to appearance. Facing the mirror each morning struggling and tormenting myself with a mop of fake hair is not important to me. When receiving treatment for cancer I should not feel pressure or shame, but support on this very rigorous journey. We live in a democracy and we should respect personal choices and stop bullying!

Now on to my 4th cycle of chemo… without hair!

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It's here: Drafting National Agenda for Patient Advocates

Cross-posting with Regina Holliday...an invitation. Please comment and share!

Dear patient advocates, e-patients and caregivers,

We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

Regina Holliday painting: will all groups
pitch in their ideas and help?

The more of us take part, the more we can accomplish and more impact we can have. Thanks!

Background:

In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants. 

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.

The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.

We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.

The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

One side of whiteboad filled in by participants
during Partrnership With Patients event in KC

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.

Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.

Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.

PWP Notes: (I’ve taken some liberty with order to organize it better)

1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2)    We need bullet points and consistency of message.  Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3)    Potential suggestions of these 5 priorities:

a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.

b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.

c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.

d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4)    How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5)    Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6)    How do we develop/deploy patient “market power”?

a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”

b.    Should we host an online petition to represent our numbers? 

c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?

A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.

Next Steps: We’ll be creating a survey through Traitwise.com (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.

Possible, sample questions:

1)    Do you want to be part of a national patient advocacy group?

2)    What should this group be called? (choices a,b,c?)

3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)

Cleanliness

hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

Data access

Demand access to your data by USB, CD or download, etc?

Dignity

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?

 

Transparency

Yelp for providers, resources like faircare, HCHAPS awareness and hospitalcompare.gov etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)

5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?

6)    Should they be paid? By whom? (choices)

7)    How much time can you devote to this cause in tandem with your own work? (choices)

8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).

9)    How much do funding limitations impact your capacity to offer the above?

10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We look forward to hearing from you! Please post your ideas in the comment section below, or at ReginaHolliday.blogspot.com

-Pat Mastors and Regina Holliday

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Cancer, But So What!

My usual two miles to school and back is always an eye opener especially when people take their time to walk and talk with me.

As I walk with another mum home we talk about my high spirited attitude and how she found it uplifting because I am always laughing. Apparently she admired the fact even though I’ve had issues I still managed to joke about my treatment. My reply was because people make decisions not cancer. Cancer hates laughter or so I’ve been told… raising my now thinning eyebrows…

I have learnt to avoid the tears and feeling like life is unfair I must remain realistic in some way. Yes tears, anger and fall outs with this cancer treatment come with accepting and understanding the conveyor belt I now share and I don’t shy away from showing it. It is not everyone else’s cup of tea because tolerances differ, but with me I will not let my treatment drag me down that deep dark silent rabbit hole of despair. Whereas others do need that extra support to vent, I have decided I don’t. I have been there and done that and it did not help to solve my situation… so I laugh and joke it is my way of dealing or coping… it’s not something to be admired... it’s who I am…

I don’t need my husband to accept my scars or friends because I know their opinions mean nothing. Friends come and go, and so can my husband if he feels I’m not good enough I have plenty replacements in the side lines. I don’t shy away from speaking my mind or expressing my opinions when others would sooner I remain silent, but that is who I am. If I did things any differently both my treatment and my personality would implode then I would not be laughing would I.

I explain to her how I have a strong image of me sat in a chair grumbling wishing I had done that, and the fear of knowing the only reason I didn’t was because I was busy trying to keep others happy. That story is something I dread because if you are not careful it can so easily happen. I don’t care about what idiots think because my priority is to my young daughter and myself. I cannot control cancer, but I can control the time I have and being a miserable buggar is not me.

I personally see everything very simplistically which means I don’t waste my time on the word NO! I am a very kind nature stubborn self-opinionated person with personal goals set out and these goals are not welcomed by everyone, but so what!

She smiled and agreed with what I was trying to explain to her. Yes I say to her I have cancer but cancer is cancer it won't wipe this beaming smile off my face. The clock is still ticking and it all falls down to me in how I use those seconds. Besides the 282 bus could hit me tomorrow have you seen the way they drive on this road… she laughed and gave me a big hug of support…

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Medstartr: Where The "Crazies" Are

Entrepreneurs in general are known to share five “C” traits: Commitment, Confidence, Creativity, Courage and Collaboration.

But in medical entrepreneurship, the other “C” might be for "Crazy". There are so many disconnects, agendas, and bureaucracies in health care, you'd have to be nuts to go there, right? But  when an unfortunate medical event hits home, you're driven by the crazy notion you can make it better for patients. 

Look at some of the folks posting projects on Medstartr.com, a brand new crowd funding platform where medical entrepreneurs pitch for funding from the world at large:

•  Regina Holliday, young art teacher and mother of two who lost her husband to kidney cancer. She was frustrated at the pace of government efforts to include patient voices in policy-making. Within a couple of months she’d crowd-funded the first-ever national conference on partnering with patients. It took place in Kansas City within three months of the project’s posting.
•  Two sisters who lost their mom to breast cancer and got mastectomies (after learning they had the breast cancer gene too) couldn’t find a bra that fit their newly reconstructed bodies. So they’re creating one that makes them feel as comfortable as any dual-breasted woman.
•  Me. After losing my father in the hospital to complications of a C.diff infection, and seeing how unprepared and ill-equipped patients are to engage in their care and help keep themselves safe from infection, I created a “portable patient advocate” that clips on the bed rail called a Patient Pod. My hope is to get them in the hands of patients sooner rather than later.

As Florence Nightingale said, “Apprehension, uncertainty, waiting, expectation, fear of surprise, do a patient more harm than any exertion.” Who would have thought  I'd wake up every day thinking along the same lines as Florence Nightingale? But the truth is, when you have a devastating personal experience, you can't help but imagine the next person walking in your shoes, and want that person to feel comforted, safe and in control when you or your loved one did not.

Ken Schwartz learned this. He was a lawyer working in health care. forty years old and married with a young son when he got devastating news out of the blue: advanced lung cancer. He’d smoked an occasional cigarette in college and law school, but he had been living a smoke-free, healthy lifestyle since then. As he wrote in the Boston Globe, early on in the diagnosis and treatment process:

 …the nurse was cool and brusque, as if I were just another faceless patient. But once the interview began, and I told her that I had just learned that I probably had advanced lung cancer, she softened, took my hand, and asked how I was doing. We talked about my two-year-old son, Ben, and she mentioned that her nephew was named Ben. By the end of our conversation, she was wiping tears from her eyes and saying that while she normally was not on the surgical floor, she would come see me before the surgery. Sure enough, the following day, while I was waiting to be wheeled into surgery, she came by, held my hand, and, with moist eyes, wished me luck…

Ken Schwartz

      This small gesture was powerful; my apprehension gave way to a much-needed moment of calm. Looking back, I realize that in a high-volume setting, the high-pressure atmosphere tends to stifle a caregiver’s inherent compassion and humanity. But the briefest pause in the frenetic pace can bring out the best in a caregiver, and do much for a terrified patient…I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rulebooks, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them.[i]

Ken Schwartz died of lung cancer less than a year after his diagnosis. But his legacy lives on in the foundation he started shortly before his death, the Schwartz Center for Compassionate Healthcare at Massachusetts General Hospital. Dedicated to strengthening the relationships between patients and caregivers, it also stands as a poignant testament to the power of the human touch, and human kindness, in affirming our basic humanity.

The projects on Medstartr.com above reflect and affirm this basic humanity. Others you'll find there--IT solutions and technologies, for instance-- also serve this goal. We can’t ensure a nurse is always there to comfort us, or a physician has the time to really listen, but solutions that carve out cost efficiencies, inform patients, cut wait times, and make critical information easier to find just might free up more bandwidth for our providers to focus more on the human needs of the person in front of them. That could do a lot to reduce a patient’s apprehension, uncertainty and fear.

Florence Nightingale would certainly approve. And if  Medstartr projects had existed in her day, she’d probably find a way to fund them. 

---

[i] Ken Schwartz, “A Patient’s Story” Boston Globe Magazine, July 16, 1995.

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Breast Cancer Rant!

I went to my GP appointment to sort the white cell injection out. On taking my seat in his office the conversation went straight into the complication of administering this injection and why people should not have that responsibility. Look Sarah if I give you the injection if anything goes wrong you can sue me. (Yes he was serious!) It was explained only the hospital that issued it should take responsibility for my care. The district nurses will not help because I’m under the big CC hospital rather than the big E hospital. My GP understood why I wanted a nurse to administer because of the unpredictability of the fits not the actual injection itself. I explained how the injection is prepped already and it has a self-administering needle. Once I had explained all of this my GP said he will administer the injection. The fact I had to travel for an hour to get the big CC hospital was to him out of the question. And at least if I did have a funny turn it was in a surgery not with someone who might panic.

On returning home I’m still pretty upset about how I had to go through all this stress for something that seemed so straight forward. Then I remember I have to reschedule an appointment I received for the big E hospital due to it clashing with my chemo session. Straight away I get through to my BC nurse and she says oh your half way through treatment you must be feeling it now in a jolly voice. I go into a sarcastic rant of well with the last week I’ve had I’m surprized I’m even bloody standing. I mean handsome Mr L had me waiting in his clinic for one hour and twenty minutes, only for me to be told you can go on your merry way. I mean he has not even said hi or bye since the damn damage done to my arm which could have been prevented if he had listened to me. She in reply tells me handsome Mr L did not even turn up for a meeting for the breast cancer group to inform them he would not be there. This left a group of women extremely upset because they had turned up to ask him about chemotherapy and the ups and downs. I reply well this man needs a boot up his righteous arse. And then I tell my BC nurse about the white cell injection saga and the portacath. Then to hit home how truly disappointed I am with my treatment I say, I have received better care with my high risk pregnancy and I’m bloody serious. I explained how I believed there had been a major cock-up and it all falls down to not receiving Herceptin. As a way of getting a reaction I say well if I received my treatment in America with a HER2 triple positive on biopsy results I would have received Herceptin. The BC nurses reply well we are not America…

So the question is… would you go for a second opinion if someone had offered to set it up for you?

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Error of a Recurrence

Since my recurrence diagnosis I have literally been left out in the cold. And my Yorkshire humor is my only solace when discussing my day to day feelings. I have not seen any of my so called oncology team since deciding my treatment. The only contact has been with nurses and two registrar's who I made clear too... you mess with me and I will mess with you... and trust me my next appointment that is exactly what is going to happen. 

How can a group of people who say you can trust their judgement on your treatment be so bloody blasé? 

Thankfully with the support of my friends and family that are close and far I’m dealing with this anger the only way I know how.

There is something that I innocently said to my husband after returning from one of many breast examinations that is bugging me. I remember telling my husband a year or so ago about these sweeping examinations of my left MX breast by the registrar’s that they were not thorough. On conversation I said Miss S did a better job on checking.

My obsession with my remaining right breast meant frustratingly I remained the talk of the MDT board. Every appointment I would say and what about this and what about that? Questioning their every move and with those questions they had to investigate, but only on two occasions did they actually check my MX breast with an actual hands on full breast examination. And each time it was Miss S that did that very thorough examination.

At one point only a year ago an emergency registrar that was brought in thought I no longer needed the six monthly breast examination appointments and was going to discharge me. It was only because I stepped in and said actually if you read my notes I had my mastectomy 2009 and I am due another six month appointment that alarm bells started to ring in my head. On checking my notes he actually said he did not see the point because my case was straight forward, but referred me anyway.

Someone has strongly suggested I go for a second opinion, not only that but offered assistance in finding that second opinion. The temptation to actually take up on that offer to finally get to the bottom of this mess is tempting, but the pressure to also remain quiet because I want the journey to just disappear is also there.

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National Agenda for Patient Advocates?

Coming soon (fingers crossed): an invitation in your email, favorite social media site, and posted on the wall where you hang out. It will include survey questions asking you where we can go together as patient advocates. It begins: "We’re reaching out with an invitation to create a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time for change in the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do you keep saying that no one’s listening to? What  are you doing that works, that you could share with others, if only there was a way to do it, or a way to get paid for the time involved in sharing it? Please read the below and add your 2 cents – or more. The more of us take part, the more we can accomplish and more impact we can have..." 

Partnership For Patients Retreat September 20, 2012, Baltimore, MD
(That's me in blue, behind Regina Holliday's painting) Second row, third from
left is Teresa Titus-Howard, who joined us the next day in Kansas City.

This post is a preview "heads-up", with a little background so you'll know where it came from.  
Where did it start? With the federal Partnership For Patients. (On the left is a photo of the core work group.) It developed further at the Partnership WITH Patients (a new grassroots organization) Summit in September.

Partnership FOR Patients work group discussing
"The Moral Imperative" of preventing harm, Sept. 20, 2012

Both groups are working on common goals-- to reduce preventable harm to patients, and to include the voices of patients and families in policy-making and events. The former is a federally funded organization. The latter was an off-shoot of the first. The former has funding and smarts to be effective. It's been working a plan to reduce medical harm by 40 %, and 30-day hospital re-admissions by 20 %, by 2013. IT IS HARD and SLOW WORK getting 5 or 6 thousand hospitals to row in the same direction, especially since government agencies must operate in a climate of committees, asking permission, forms in triplicate, crossing T's and dotting I's. They're trying to bring more and more patient/family voices into the mix, but it's slow going (see above about committee work). The people involved in PfP are wonderful. Committed, smart...the best we could ask for. But "nimble" and "agile" they can't be. By culture or by contract, it's their lot, working for the government (they know it; they wish it weren't so).

Frankly, we patient advocates are impatient. We feel we can offer a lot more, faster. The problem is the patient advocate community, while passionate and committed, is largely a fractured group of “one-offs”. We're made up mostly of individuals and small organizations scattered throughout the nation. We work on different issues: legislation, hospital-acquired infections, informed consent, implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Most of us were co-opted into this work by the loss of someone we love. We toil in obscurity, largely under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities. It's also hard for organizations to interact with us when "us" is so loosely defined. How can we tap our own numbers and collective passions, talents and energies? How can we inject ourselves usefully into this important work?

The "Partnership With Patients" Summit was evidence that our greatest asset in delivering on these goals might be social media. The Summit itself was conceived, planned, and executed using the tools of social media (Facebook, Twitter, Blogs) to get the word out, structure the event and fund it. An eclectic bunch of 70 or so patient advocates, providers and others from the full spectrum of patient advocacy carved out the time and funding to attend. The conference was produced largely by a tireless powerhouse, "Arts Advocate" Regina Holliday of Washington, DC. (For those who don't know her, Regina lost her husband Fred in 2009 to kidney cancer, leaving her with two little boys and a burning frustration at being denied Fred's medical records in time to advocate for him before he died. She painted a mural depicting this frustration and now presents, paints and speaks worldwide for patient advocacy.) As she writes about the Summit in her blog "We proved it was possible for a loose confederation of patients to gather and organize with little time and little funding.  We were nimble. Each benefited from the expertise of the other. Most of all we proved this could be done.

"Remember where this saga began?", she writes. " On May 22nd , we were told there was no funding to gather patients to talk about goals of the Partnership for Patients campaign.  Pat Mastors and I thought we had to do something to change this.  Kathy Nicholls helped create a website and we began to plan.   In the months hence we worked with the team from Weber-Shandwick [the PfP contracting vendor] and the Partnership for Patients team from CMS to open up communication between an ever larger group of patients.  Representatives were able to come to our Kansas City summit from both Weber-Shandwick and CMS." 

The PWP Summit also showed the power of new "crowd-funding" web platform Medstartr.com to overcome funding challenges. Regina posted a project there, offering shout-outs on Twitter and Facebook, plus her paintings, as rewards to backers. The project was funded at 219%, raising $10,948.00. HealthTechHatch and the Society for Participatory Medicine also hosted a travel fund, raising another $6,0000-plus dollars to provide 9 travel scholarships. Cerner donated the conference space.

Regina Holliday, Pat Mastors

The "Un-conference": great ideas, great energy

In the halls at PWP- facing us in the center is 
Teresa Titus Howard, 
Deputy Group Director, 
CMS Innovation Center

My "Ignite" Presentation at 
PWP Summit.
(Note to self: don't wear black 
when standing 
in front of a black curtain)

At the Summit, more than a dozen of us (including e-Patient Dave deBronkart, Society for Participatory Medicine President-elect Michael Millenson and others) shared "Ignite" presentations (20 slides, 5 minutes). It was exhilarating to be on stage to present our views on how the patient/family voice can improve health care (at most events, we're lucky to be in the audience.) In other sessions, attendees more experienced with public speaking and using social media tutored others. An "un-conference" began in one room with attendees brainstorming solution to given topics; we immediately broke into small groups based on like passions. We came and went as the dialogue compelled us. There was not a single "death by PowerPoint". 



Meet-ups in hallways, restaurants and lobbies turned into information exchanges, friendships, collaborations and lessons in using social media. And everywhere on the backs of jackets there were paintings from the "Walking Gallery", each of which tells a unique story of the wearer's (often unfortunate) interaction with the medical system. Regina painted most of these herself (including several in the hotel the evening before the conference started). Though we didn't need them quite as much in this crowd of peers, they present  a "face" to the struggles of our advocacy and a tribute to those we've lost.

Jackets from the "Walking Gallery"

One page of white board takeaways

On the last day of the Summit, Regina and I hosted a session on the future of patient advocacy. What could we, should we do, together? We recorded the crowd's ideas on a white board. There was overwhelming support for the concept of developing a unified agenda. We took photos of the white boards and are working off of them to produce the survey we will ultimately bring to you. 

So what do you say? What do you think about "crowd sourcing" a focused agenda for the patient advocate community? Would you want to be part of it? Would you help?

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