Written evidence from Action on Medical
Negligence Association
1. AMNA was established in January 1998,
as a voluntary organization to support victims, and campaign for
a change in the culture surrounding clinical errors and the treatment
of iatrogenically damaged patients and their relatives/bereaved
relatives. From the outset, we came to the conclusion that the
key to protecting the rights of damaged patients and also improving
patient safety is open disclosure, admission, reporting, investigation,
and recording of individual errors and systemic failings.
2. In recent times, the importance of openness,
transparency and accountability in government and public service
has taken centre stage. Last July the N.I. Department of Finance
and Personnel revealed that they are working with the U.K. "whistle
blowing charity" Public Concern at Work, to produce a "policy
model template" for NI public officials seeking to "blow
the whistle" on malpractice in their organizations. It is
of note that PCaW have been given the job of providing support
to the NHS in England ["In the NHS, more than in any other
organization, whistle blowing can be a matter of life and death".
said Anna Myers,[PCaW Dep. Dir.]
We do have, of course, the 1998 Public
Interest disclosure Act:
43B Disclosures qualifying for protection
(1)In this Part a "qualifying disclosure"
means any disclosure of information which, in the reasonable belief
of the worker making the disclosure, tends to show one or more
of the following—
[d] that the health or safety of any individual
has been or is likely to be endangered.
3. Across the world, in recent years there
has been a remarkable growth of organizations, with a similar
remit to change the culture from one of blame, denial and cover
up to a collaborative effort involving providers and patients
in dealing fairly with victims and their families and away from
a confrontational complaints/legal scenario. In 2004 the
WHO formed the World Alliance for Patient Safety [WAPS] , and
in October of that year was formed Patients for Patient Safety
Alliance, which has triggered a worldwide movement for change
involving organizations and "patient champions". The
following statement appears in their London Declaration of March
2006. "There is a right to safe healthcare and we will not
let the current culture of error and denial continue. We call
for honesty, openness and transparency. We will make the reduction
of healthcare errors a basic human right that preserves life around
the world." The agenda for change is being driven by a few
key individuals, notably Liam Donaldson, CMO for England and chair
of WAPS ["to err is human, to cover up is unforgivable, and
to fail to learn is inexcusable", Lucian Leape, Professor
Albert W.Wu of John Hopkins, Professor Hughes CEO, Clinical Excellence
Commission, N.S.Wales and Susan Sheridan of CAPS [Consumers Advancing
Patient Safety].
4 In all discussions on patient safety there
exists a "black hole", a topic which is usually avoided,
and that is the treatment of victims after a medical mistake or
iatrogenic event. When AMNA uses the phrase "medical negligence",
we are more likely to be referring to the ,quite disturbing, mistreatment
of damaged patients/relatives, where the injury is often compounded
by delayed or inappropriate or no intervention and damaged patients
die or are left disabled ,when those outcomes were avoidable.
This aspect of patient safety is ignored, as is the ongoing abuse,
blacklisting, and denial of routine healthcare, which may characterize
their medical treatment for the rest of their lives. In the recent
NHS Constitution [for England 21 January 2009], this scenario
is recognized in the Pledge that "the fact that you have
complained will not adversely affect your future treatment"
and "when mistakes happen, to acknowledge them , apologize
, explain what went wrong and put things right quickly and effectively".
AMNA have highlighted this area in a 21 page submission to
the NIHRC in February 2001, and presented some 20 cases over
two meetings with NIHRC in April and May 2001, which demonstrated
our thesis. When AMNA met up with similar organizations from across
Europe , in Dormagen in November 2004, this subject of secondary
neglect was found to be a widespread phenomenon and forms the
core of the agreed Dormagen Declaration ,which can be accessed
on the Iatrogenic Europe Unite Alliance website at www.ieu-alliance.org/
5. There is no longer dissent about whether
full disclosure is essential to the safe running of any healthcare
system, necessary in informing and driving any patient safety
programme and protecting damaged patients and their relatives/bereaved
relatives. The debate is now about how it can be achieved. The
options are to:
A] Continue with a voluntary system relying on
the goodwill and cooperation of health professionals and providers
to be open and candid, when things go wrong, with a corresponding
understanding and forgiving response from patients and their families.
We would argue that such life and death situations
are too serious to be left to a voluntary code, and though there
are success stories, there is also evidence of failure.
The confidential reporting and recording of
incidents introduced by the National Patient Safety Agency [NPSA]
in England some years ago is now shown to be largely revealing
only "near misses", non—clinical accidents and
minor patient safety breaches. In recent months, the "duty
of candour," as set out in "Safety First" document
has been countered by contrary advice from the NHSLA[ Litigation
Authority] in England.
B] A statutory obligation for health professionals
to disclose and report medical errors and in particular any medical
error that has harmed a patient. This is in line with others who
are obliged to make such reports eg motor vehicle drivers or factory
managers.
C] A human right enshrined in a Bill of Rights,
which could be:
Specific: A Disclosure Clause compelling health service
providers to make disclosure of all medical errors, patient safety
breaches and near misses, in order to protect the rights of the
damaged patient and improve safety for future patients.
General: The concealment by officials of the facts
and circumstances posing a threat to the life and health of people
shall entail responsibility according to the federal law.
Russian Federation Article 41 [3]
6. In conclusion, it is rather difficult
to encapsulate all we would want to convey to you in this short
submission. There is now a vast amount of literature on the subject.
Our sister organizations in England have similar objectives:
Sufferers of Iatrogenic Neglect at www.sin-medicalmistakes.org/
AvMA Action against Medical Accidents at www.avma.org.uk
1 May 2009
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