A discussion/Interview held after the first European Day of Patientwrights april 18 2009 between experts of experience regarding. It is a rather confronting document about the reality in patient wrights how things really are...

1. Amsterdam Rode Hoed 18 April 2009 First Day of the European Wrights of the Patient.
Account of the conversation after the ending of the debat.
A: Welcome, I’ll take your card with me, so your name at least I can ...
B: I did not like it, say…. I did not like it, there were too many -too many- words
C: little details, where in…, they’re not doing anything, don’t you thinks so?
D: Yes. Well what should I say…it is just a group of people simply discussing with each
other again, ofcourse. And eh…, victims or protective relatives, you know, you do not
find them back in this at all, they are no part of the discussion panel. Smooth words,
but we all know what will come out of this ofcourse. As log as we -or at least- as long
as the patient actually is not represented as a victim or as relative, then all this is a nice
fakeshow so to say, and then this is standing completely for nothing; and that is also
the reason why I did not react. I also think that I also really would not have been given
the chance to that, but if we also would have been part of the discussion at the table the
discussion, the debate would have become better into existence, sure. Or that they
gave us more the word and let us us speak more regarding. That is truly my vision hey,
because indeed we know better then anyone else (from practise) how things work. Just
stories of truth, not that turning around. I mean, what stories? No truth; and -but again-
, who knows, maybe next time we are invited and we will be allowed to take part of
the discussion table and allowed to do our sayings for the large groups of victims.
A: What I found very typical was that in the final discussion part they were expressing
something as: Yes there is a legislation, but it will not come into excistance, and yes in
fact (all) this is counting for nothing and that was the conclusion in the end; some kind
of pessimism. What is your opnion about that? Do you think that the wrights will be
respected more for the patient in future, or are we dealing with a first step to a dream?
E: I find this a nice formulation. The dream has been put very clear, and it is also an
honoust dream of many people, so I do not what to reduce some of that, but it has been
a dream a for much too long time. And we do not see much progress, so indeed, there
for I’m not optimistic regarding.
A: What I appreciated very much was a short juridical procedure of yours wherein you
demanded the report of an accident. It was about a former surgery technique being
used etc, and this was treated in a national reportage, wherein also healthcare IGZ
mentioned that it is a good ‘work’ to keep affairs kept treated -under the …- within
chambers. I did found that very good that at such a moment a case gets broken open,
but it is very marking the fact that it is that difficult to get an honest treatment of a
case, we are not even talking about a criminal procedure against someone that had
made a mistake, it is just about an honest conception of what in causal had happened.
E: Last week again quenstions have been posed in the Dutch House of Commons, so
maybe again this will do a little - a centimeter- by the Socialistoc Party (Sp).
A: Yes yes, hmmm
M: It is about to start a little now, because in the early days this was not all the case... We
were in contcat with mr. De Wit once before, a collegue of yours.
E: I beg your pardon?
M: Member of the house of Commons De Wit of the Sp, we did contact him once in a
while, to see if he would like to do something about it (for patients), but he didn’t...
E: De Wit is one of the questioners now
B: Yes at the moment (2008)
E: Now; Zembla is one show what is receiving attention and is being noticed by the
House of Commons, so he also has signed regarding those questions. Mr. Van Gerven

2. is generalist or a - yes- medical scholared of the Sp fraction, together with mr. De Wit
who is a lawyer. they have been posing questions athe minister of healthcare WVS and
the minister of Justice.
A: What is actually your opinion regarding the note of policy Safe Reporting that
improper (medical) behaviours do not have to be prosecuted. That is the minister of
justice instructing himself.
E: That was is not prosecuteable…?
A: Eh, medical improper behaviors so to speak, -so matters that should be prosecuted in
everybody’s well minded opinion; the law is based upon the proper way of thinking,
every person understands that certain matters should be prosecuteable, also within the
field of medical care- the minister of Justice then in that particular case is telling in a
note that for the moment he still does not want to put this under the attention:
prosecutability.
E: Well ok, so take it like that: doctors find it difficult to be exposed to criminal
prosecution. They are like a huna being... (!)
A: But everybody has difficulty with that.
E: I just wanted to say, you mention it, we all also have this, but they can say if we are
exposed to that, then we will not tell regarding ..., and in order to get them talking the
minister of Justice then is telling ‘well in that case we will not prosecute you, so you
can talk.’ And that is a little odd I find, because it is civil unobedience, … right…,
people just have to tell the truth to their patients, and in case they are not doing that,
then we are approaching them by telling them ‘please would you like to tell, then we
will not prosecute you.’ Ofourse that is very strange.
A: Thank you. Eh Patient-interests…
B: Well, proper name, hm, that is eh… Yes we have come together again in order to
become a bit stronger now, and slowly it is starting to work.
E: Yes I meant what I said. I have spoken with some people that...
B: I’m pessimistic too.
E: I have seen a few people, that simply were trying to do something. And then that
certain person is someone that did do somethong for it at his best. Maybe that is
making more a differance then a few lines or two.
B: I too think maybe that makes a differance yes. Often in history it is like that certain
people were forfighters for something, and then something started after. Recently in an
English film about slavery I saw wherein an Englishman was making himself angry
about for two decades and - finally - in the end something stopped.
E: So change is to be pointed back to the initiative of one or two individuals.
That is nice right?
B: That is nice, but it realy is tyring.
E: So is the issue to recognise which intiatives that are undertaken now finally will have
that result. If we are able to do that, then we are acting right.
B: Ofcourse, but the problem with that doctors, and I really mean that, because I know
that professor Smalhout did write about that once, we have put that on our website, I
find it gradually becoming like a criminal organisation, like doctors are helping
eachother to conceal mistakes, to keep them under the table, in my vision - yes.
E: But the association of architects, the order of advocates…, and also some more of
those other clubs are equally guilty, yes, I mean,
B: But there is a patient, right…

3. E: I’m just talking only about the group. One is together with the others, and you find...,
one supports eachother and it is simply wrong I find, yes. It is wrong.
B: No, but you see what it is about to me, in case you are a victim of a medical error, then
often physically something has to happen after, medical aid has to come, because if
you do not receive this your body will get (medically) even worse.
A: Yes, so you are completely dependent right?
B: Indeed, in that case, you are completely dependent! Well, and in my opinion in case
you are searching for help at another collegue, then that one will tell that collegue mr.
A has done the right thing. And this - I find…-, and this means that the victim gets
stuck with it’s physical problem, and I think this indeed is becoming criminal.
E: I first adress my thoughts at someone with whome we made the differance between the
big city and the country side with small villages. I live in a rather anonymous city as
Amsterdam, in case I get a disargument with my generalist then are still 365 other
generalists that might not know me, and where I can go to. While in case if - nothing
wrong about Lunteren- but in case you live in Lunteren, then you will have to go to
another doctor that is part of that same group of doctors, and who’s friend it is, and
that is very difficult/delicate.
B: But now you have to….in a big city as well say. Because in case one - and I have done
that- made a change of generalist, then one can only go to a generalist in a certain
neighbourhood, in The Hague. So indeed this is not Amsterdam, but it is a big city.
But then when we to - we could not go to a complete different generalist- we were
thinking to go to different generalists, but all these generalists are some bit in league
with eachother, say....
A: What is your experience as advocate of medical injury of harm regarding subjectivity
in the disciplinaire court and the incompleteness of medical files and…
E: Well, may I respond that question likewise, eh, objectivity is an eagerly wanted dream,
but what is objectivity, and who is objective?
A: Let us put it different. Once there was a man telling that his leg was going to be cut
off, but the wrong leg was cut off. Yes that is a simple example. Everybody can get
away with that in court, to everybody this is clear. But starting from the moment this is
internal (inside the body) one has to proove mith MRI scans, and then so to speak one
gets a doctor telling that ‘we see a blue apple, while everybody can see a red apple’.
E: The question is about the administration of justice?
A: Yes, indeed, so what will you do when you are confronted with a situation wherein the
expert is telling we see blue apple, while....
E: I’ll tell you something. There is rumour. There is a very big magasin of medical
profession called The Lancet, and years ago there was published inn an example of
someone whose left leg had to be amputated, and in order not to get confused they had
used a large marker to put a cross on the leg that had to be talken off. The wrong leg
went off, why? Because the patient was lying in such a way that the cross was printing
on the leg that had not to be amputated. It is obvious that if one leg has been
amputated - the wrong leg-, then one has made a mistake.
A: Yes that is visible.
E: In case you have done an effort by marking the right leg to be taken off, but by
coincidence that mark got on the wrong leg, and in case this is not a proveable
mistake, yes, then the patient will not receive a financial compensation.
A: You see, that’s the point, starting from the wrong leg has been taken off, and that
indeed is visible, someone should get the social support, and that is the biggest
problem people get bumped up to, because point is if you are lacking your leg and you
still have to walk on in society, because so called you are still ‘having two legs’, yes...

4. B: Yes, because that other leg still has to be taken off as well yes...
A: No but, there, that is a very big main problem.
May I still ask to you for a small reaction regarding the debate?
D: Yes Ok, well in any case eh, the small film has been shown, the peoples were there,
and yes we were invited and that is ofcourse already an advancement right? Hey?
They also could not invite us, in principle they have been a good host, and I think we
cannot criticise them about that. But in future, the nexty time, we also would like to be
a party joining this table. I think that this defenitly is one of the options possible. But
OK, I think this debate - yes- is one as there were already so many before.
A: What do you think of that example that that gentleman cited about or better to say
about actually what’s not - last question- eh about that leg that has been aputated?
D: Well I can be very clear about that, something is reproachable or not, it doesn’t matter,
reproach ability maybe is also something in criminal prosecution hey, and then the
damage is different, and in case it is a normal mistake - like as you sketched hey- then
there should be normally a compensation for, yes in my opinion.
A: Well OK, I find the social recognition and so …
D: Yes. Exactly.
A: And eh, to me it gave the impression, that one gets into a vacuum domain then after.
D: Yes OK, but again, this far we are not yet, so that is why we should be at the table, and
when we are at that table we can define matters and (hopefully) change them.
A: OK, Thank you for your time.
A: May I pose some questions to you? You are a spokeswoman I understood, what did
you actually find of this meeting?
C: Yes, it was eh a bit like the former debate, lots of talks, and poorly useful I find, there
is too much discussion going on over and back again about matters that are not an
issue on the table yet. So I think to myself, do show some facts first, and start
discussing about these facts, but this - yes- I found ‘baking air’ discussions.
A: Hm, actually you are telling that here they are (only) talking about the outer side of the
spere and to the point mentioned problems regarding how to deal with (issues), there
they do not talk about.
C: Indeed they don’t. I think if one is organising this kind of debates and people - like us-
something will only happen when we are already walking behind our rollater. On that
term - the long term- they are talking here. It is just eh..., on short terms nothing will
happen here, and then I think to myself, yes, I’m calculating what such an afternoon
did cost regarding all this personelle (the conference room etc costs), and then I think
to myself how much good things in effort we could have done with that money.
A: What was lacking in your opinion to this discussion?
C: I found that there was eh to much disccusion amongst them, I mean under the
members of debate themselves, hey, they were kept in parole long, while the people -
the audience- did receive a short term only to speak, there was too little space to
debate, that is why you did not had the chance to say anything, because I understood
there was something like twenty minutes in total to realy debate, well that was really a
very short measured time available, so then one yes is sitting a bit like thinking ‘to bad
this is going this way’ this actually should have been different. Yes.
A: Yes, what I found typical in this debate, and what I also said at the end like - yes
indeed a law - that KNMGman is telling like-: installing legislation, that will not arrive
in the first place. As if they have decided that already, count that one. But what I also
mentioned is that one can implement legislation what ever you want, but in case there

5. is not prosecution on deliberate violation of legislation, indeed nothing will change,
with.
C: Well I think that legislation…, I think hmm, ladies that have been mutilised by beauty-
clinics, there only is... a privat clinic only has to register oneself, they do not have to
report, those people (victims) are even off worse. And for these woman / this group of
people there is no aid or whatsoever! And what I also always eh...., were they did not
talk about, is that when you become a victim one arrives in a certain kind of corner of
your life, hey. Your normal … - one has to let go of everything. And then also one gets
attacked by your treating doctor due to a lacking legislation. So one is already in the
corner of the harmed ones, one has to defend oneself permanently, eh financial
interests, often a financial burden comes with...
A: One becomes harmed and ones abillities have been reduced
C: And many woman or - let me put it right- victims eh can not afford a lawyer, so there
case will never come up outside in front.
A: You mean a lawyer that will starts acting in privat for you?
C: Yes on a no cure no pay basis
A: Yes, but that also is a ‘sof’ you know …
C: That too is very small, but I mean like… let us put attention to that, let us put attention
to stories of victims, let us see how people want it. But what are we hearing now?
A: That is what we are doing now...
C: What we are hearing now is just what that people around that table want. One is telling
I want a permanent legislation, and then they are discussing one hour ‘Yes, but I do
not want a new legislation’, and then I think to myself what a waste of that hour.
A: But that I found very typical, that KNMG that is clearly telling that that legislation will
not come into existence, as if this has been descided already long before.
C: Indeed, yes that is a pitty.
You know what I’m still hoping for? That on one day the (former) inner courtyard of
the Dutch House of Commons will fill up full with victims (of medical injury of
harm), and a petition will be offered, and only then one will achieve something in the
Netherlands, but not in this way.
F: People carry a big mouth, but they do not show up.
A: Ok, but as a patient one also still has to be able to do that (to stand up), because it is
very difficult to do your own defence. There are only a few of those capable.
C: That is correct yes, but I … it is important that some people step up in front and that
they say like ... say what..., well yes some, … one has to be very strong mentally...,
because you are talking about a conflict for many years. It is not just a fight for a year,
no, often we are talking about ten years or more and etcetera. And again will you be
set into your wrights? So... In my opinion there should be put more an eye to the
patient interests in their wrights. At the moment there is too much... this kind of
stories- I have heard already so many times- and then I think to myself this is so
meaningless, first I have to see about it what is becoming of it in reality.