Medical Blunder #3

Marion & I are shaking like leaves: the hospital sent Kay home today without one of her most important medicines, dexamethasone. It was only because Marion is so careful and organized with Kay's home medication that she spotted the mistake. She knew that dexa was started at the hospital on Thursday and that it should run for 5 days. So when she was checking the medicine that I brought home today, she noticed the missing dexa.

I have to say that this mistake escaped me completely and if it had been down to me, Kay would have missed out on dexa for the coming days. Dexa is an important element of the chemo cycle, having an amplifying effect on the vincristine that Kay was given on Thursday. Note that not only were we not given dexa, we were not even given a prescription for it.

Marion phoned the children's oncology ward to report the mistake and to find out what to do about it. In principle a prescription would have to be issued that we would have to take to a pharmacy that stocks the stuff. Inevitably this would mean driving to Nijmegen and back (it's -8 degrees and cooling outside). By sheer luck Marion still had the remains of a previous dexa prescription in the "to be thrown away" medicine box. The reason that we still had still was due to one of Kay's previous sudden admissions.

We're terrified. This is a child who is not under the MRD, a child who missed 1.5x vincristine treatments because of the itraconasole story and who now could have missed another important component of her treatment due to a stupid mistake, another failure of communication at Nijmegen. This is a child who faces having a bone marrow transplant in an environment where "The System" cannot be trusted and where we MUST police every aspect of her treatment.

The stress of being a parent is bad enough. In fact at the moment we're both scared stupid by the idea that Kay has to undergo a transplant. But add to that the fact that our confidence in a system that has now made 3 medical blunders and numerous other errors of poor communication has reach an all time low and both of us are absolutely at breaking point. We have seriously discussed taking Kay out of Nijmegen to one of the other academic hospitals in the Netherlands. We will definitely file a formal complaint about all this, but, frankly, I don't expect that to heal our broken confidence. In the end we have demanded to sit round the table at the earliest opportunity with the departmental Professor in order to aire our grievences.

The problem with Nijmegen is not the professionalism of the staff, we have confidence in the individuals with whom we deal. The problem is with "The System", namely the communication between the various disciplines that deal with the patient. At one point I asked to talk to someone in charge of "The System" and was met with blank stares. "Was it a medical problem or a nursing problem?", I was asked. Which is of course exactly the point: there is NO ONE responsible for delivery of ALL care to the patient. This is the role that Marion & I are having to fill, two people who are non-experts and worried, if not terrified, parents. How on earth can we be expected to systematically ensure delivery of the correct care/treatment to Kay?

I am sat here oscillating between incandesent rage, knee trembling fear for Kay, worry about taking on/criticizing the system/staff on which the life of our daughter depends, disbelief that this could be happening and a bone deep tiredness/resignation that Marion & I have to pit ourselves (again) against an entirely unfair problem.

I have to say that I'm very very close to calling in every lawyer and journalist I know so that someone else can take over the job of screaming from the rooftops about this problem c.q. representing the interests of the patient and Marion & I can go back to being just what it's enough being: Kay's loving parents.