Just over two
years ago, my friend Millie Niss - whom some of you also knew - died of a
mis-diagnosed
spinal infection.
Millie was smart,
funny, talented and an inspiration and delight to all who knew her.
Her mother
Martha Deed, herself a talented poet and artist, has campaigned tirelessly to
uncover the truth behind Millie’s death.
She also organised
the publication of a collected volume (it’s superb and I recommend it) of
Millie’s writings.
http://www.blazevox.org/index.php/news/city-bird-selected-poems-1991-2009-by-millie-niss-edited-by-martha-deed-9/
Also due to
be published shortly, by the same publisher, was a volume entitled “The Last
Collaboration”,
a poetic/documentary account of Millie’s last days based around her e mails,
her and her mother’s blog posts, medical
records and much more.
Abruptly,
shortly before publication the publisher changed his mind.
It seems
pressure from the hospital was either exerted or perceived.
The
publication is going to go ahead as a download on a UK based web site but in
order to overcome the inevitable questions arising out of self publication we
are seeking sponsors –signatories to a statement of support - particularly, but
not exclusively, from the world of healthcare and from Millie and Martha’s
field of art and writing.
Many of
those who have signed already knew Millie but we would also be pleased to have
signatories who
believe simply that her story should be told and that such telling should not
be dependent on the perceived approval of a big player in the US health care
system.
I attach
the statement (and paste it below too). Please read it and sign
it if you feel able to and send that signature and your details on to Martha as
requested in the document (copying me in too)
Many thanks
Michael
******************************************************
Statement
Millie Niss, web artist, poet, beloved daughter, listserv
member, activist and advocate for chronically-ill patients like herself, died
November 29, 2009 of an undiagnosed spinal infection. She died in a Kaleida
Health System hospital
in Western New York. She was 36 years old.
We are putting our names to this statement, because some of
us were friends and colleagues of Millie, some of us have suffered similarly,
some of us are simply outraged by the state of health care in the most powerful
and richest nation in the world.
What is the urgency to witnessing the disasters happening in
US hospitals that have maimed or killed ?
180, 000 preventable deaths each year
http://oig.hhs.gov/oei/reports/oei-06-09-00090.pdf
The United States
loses more American lives to patient safety incidents every six months than it
did in the entire Vietnam War
http://www.healthgrades.com/media/english/pdf/hg_patient_safety_study_final.pdf,
p.2
US
life expectancy is ranked 37th in the world
http://www.webmd.com/healthy-aging/news/20110614/us-life-expectancy-lags-behind
Preventable hospital death is the sixth leading cause of
death in the US
http://www.justice.org/cps/rde/justice/hs.xsl/8677.htm
We believe that Millie Niss’s story needs to be told. We believe that her
story will add to the
conversation that needs to take place to make hospitals safer for patients.
The Last Collaboration is a construction of Millie’s hospital experiences in
the last hospital she
ever visited. The story is told through
Millie’s notes, emails, the daily diary she sent home, her posts on her
Sporkworld blog, her mother’s log, and Millie’s medical records. These primary,
often raw, documents are framed with medical notes and clinical guidelines as
well as the outcomes of two NYS Department of Health investigations of Millie’s
care.
Millie wanted her story told. She wanted an autopsy performed if she
died.
Because of the autopsy, we have the story.
Because Millie was an artist and a poet, because her mother
is also an artist and a poet, because Millie and Martha often made art
together, this book is more documentary art than theory.
Thus, it was fitting when the publisher of Millie’s selected
poetry agreed to publish The Last
Collaboration.
And then, when the final proofs were finished, the early
comments in place, the book block ready for the printer, the publisher abruptly
canceled publication. In withdrawing
publication, he did not cite artistic failure of the book. He said
[T]here are
problems waiting in the wings.
The Kaleida Health System, which owns the hospital where
Millie died, is the 11th largest non-profit hospital in the United States
http://www.beckershospitalreview.com/lists/50-largest-non-profit-hospitals-in-america.html
The Kaleida Health System is also the third largest employer
in Western New York with 10,000 employees.
www.ppgbuffalo.org/wp-content/.../WNY-Largest-Employers.docx
Searches of the region’s major newspaper, The Buffalo News, reveal nothing about
the deficiencies in Kaleida hospitals that are recorded on the New York State
Department of Health’s public website. The
local media has carried only laudatory stories of capital improvements to the
Kaleida campuses and plans for further expansion.
Whether the mere status of Kaleida Health has been
sufficient to discourage criticism in the media, or whether it has actually
exerted its influence to prevent such criticism from being published, we feel
that Millie's is a story which must be told.
We hope Millie’s story furthers a public conversation about
the dangerous state of US health care and what can be done to fix it. We hope
it contributes to a tipping point where the killing of people in their local
hospitals becomes as important to the US American public as preventing highway
accidents or the spread of food-borne illness.
− Signees
To sign, please send an email to [email protected].
Please include your name, geographical location, occupation
with degrees if appropriate, website if appropriate.
Your email will not be published. It will be used only if there are questions
about your listing.
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