Cat among the pigeons

Last Friday, I met up with a veteran UK politician who I have known for over 20 years. It was primarily a social call. Naturally we talked about Phil and what he was going through, as well as some of the challenges we were facing with the Hospital, including the lack of a diagnosis, the failure to support Phil and Chris psychologically, the constantly-moving goalposts etc etc

He was so surprised and shocked by what he heard that he picked up the phone there and then and called the CEO of Great Ormond Street Hospital to express his concerns. The CEO, who was about to go on holiday, agreed to task a fellow director to take charge of the issue and to report back to him on how it was being resolved.

I therefore got a call from one of the Directors – who is also a heart surgeon – yesterday morning to discuss ‘your complaint’. I explained we hadn’t made a complaint, rather that a senior politician had asked the CEO why Phil still didn’t have a diagnosis, why his medical history hadn’t been reviewed, and what GOSH planned to do to ensure that when/if we gave our consent for the transplant that it was truly ‘informed’ consent.

It appears the Director also called the consultants on the renal ward, because 2 of them came marching down the renal ward corridor shortly after insisting to talk to my wife Anne just as Phil was being disconnected from his dialysis machine. Arms folded, they sat in a meeting room and demanded to know what we wanted to know. Not the most positive start..

Anne produced Phil’s transplant plan that had just been given to her by the Transplant Coordinator. It included a number of new procedures on Phil that had not been discussed or agreed with us at last week’s appointment with the consultants. The consultants, however, claimed to know nothing about it, openly disagreed with it, and appeared to be suggesting that Anne herself had written it!

Anne then asked about the findings of the immunologist who had come to see Phil at the request of one of the consultants. But the consultant promptly denied even knowing any immunologists at the hospital, much less asking one of them to assess Phil. Anne joked that perhaps it was someone who had wandered off the street. They failed to see the funny side… The meeting ended shortly after.

The Director called me later that day, clearly expecting that things had now all been cleared up. I explained to him that the chaotic meeting had if anything lowered our confidence in the team and hospital. We agreed that Anne and I would instead draft a list of all the questions we still needed answers to, and that he would oversee the task of getting them answered.

I emailed him the list earlier today. I received a prompt acknowledgement from his iPhone apologising for the brief message as he was “in OR” (in the operating room) performing heart surgery.

I must to admit to being slightly aghast when I read his message. I had a mental picture of him, scalpel in hand, updating his Facebook status…

Let’s see what reply we get. Surely it is right that as his parent, I have a moral responsibility to ensure I am fully informed when giving my consent to all the painful, distressing and life-changing procedures my son will have to go through, especially when there is such uncertainty as to whether they will actually work? Would it not be tantamount to negligence to simply sign on the dotted line when he does not even have a diagnosis, and his medical history has not been properly reviewed?