Retained Organs Commission
When I received the letter from Martin Turner telling me that the Royal Gwent Hospital were holding body parts of my son, I broke down when I read that paragraph. Since then nearly every time that I try and talk about Brendan whether to family, friends or just interested parties then I get overwhelmed with emotion and am usually unable to hold a sensible conversation about him as the tears are flowing. I seem to have lost complete control over my emotions, even some times suffering the same problems on events that are unconnected and far from me. This is a problem that has come to me since trying to read that letter.
So, in March 2003, the Retained Organs Commission held one of their meetings at the Jury's Hotel in Cardiff. The main meeting was to be held in public on March 13th and in the evening of the previous day, March 12th relatives of persons and this means adults and children alike that had their organs retained were invited to an informal meeting with the Commission.
The Commission is chaired by Professor Margaret Brazier with Steve Catling as the Acting Chief Executive. There are then various other members of the Commission who were present and also Jan Robinson, Treasurer of Pity2 an organisation set up too help relatives whose children had their organs removed at the Alder Hey hospital in Liverpool and any other family anywhere who has gone through the same ordeal as themselves.
On entering Jury's hotel, my wife and myself found our way to where people who wanted to attend this meeting were being received. We were asked to fill some form in with our names and address's and in due course we were approached by someone connected with the Commission to find out why we were there.
As soon as I started to tell them why we were there, my eyes went, I started gritting my teeth and it was immediately obvious that I had some kind of problem and so this lady whose name I have forgotten latched herself onto us straight away and stayed with us for the rest of the evening. She was in fact one of a number of counsellor's that are always present when the Commission meets.
When the meeting started, the Commission asked people for their comments or stories and there came out some horrendous stories of organ retention and in some cases feelings of tremendous aggression against the medical profession and the people concerned and also some stories that the Commission seemed to be very familiar with as I think that in some cases, individuals were following the Commission around the country repeatedly putting their own case forward. I had with me a folder with all the documentation that I am using on this website.
Just before the break and by this time my wife and I seemed to be surrounded by every counsellor that was in the room, I stood up and spoke or I should say that I stood up and tried to speak. I was completely overcome with emotion again but the situation wasn't helped by the microphone that they were using to record the evening. If you held it close to your mouth then it appeared you were shouting and by moving it slightly away, no one could hear you. Somehow with the help of my wife and trying to keep my voice in sync as to where the microphone was, I tried to make myself be understood, to tell my story and express my views, even the counsellor's were helping me too. Eventually I finished but one point that I did get over was that if I was asked to sign a post mortem form in a similar situation as I had done so before, providing that I was kept fully informed of the procedure and that all body parts were returned for burial with the main body and that there was a good chance that some benefit to other persons may become of it, then I would sign again, but not for a butchery exercise.
Who am I to deny the right of life to someone that necessary research carried out by a post mortem may help them live or to have a normal life?, but it must be done by 'INFORMED CONSENT' and with the total wishes of the relatives being adhered too.
The Chair called a break and coffee, tea, biscuits, etc were served to us. I was approached and spoken to by various members of the Commission too who I told my story and was eventually visited by Professor Margaret Brazier and Steve Catling. I told them my story and of the lies that we had been told by Martin Turner and the Gwent Healthcare NHS Trust. Professor Brazier told us that we are lucky? in Wales to have our Community Health Councils as they had been disbanded in the rest of the UK and that I should contact them too make an official complaint against the NHS Trust on my behalf.
On resumption of the meeting Professor Brazier asked if anyone else had anything to say but unfortunately because of my performance everyone else were reluctant to say anything, they didn't think they could beat my un-intentional performance.
After a few more words the meeting was closed, at least I got everyone to go home early!