Good afternoon everybody! When I was told I was going to be sent to Coventry to speak I was quite amused. When I then found out I was going to be allowed to speak for several minutes uninterrupted about myself, the world turned a little upside down. For many people living with diabetes the world turns upside down quite often. It is not an unusual occurrence. My world turned upside down six years ago as you have heard. Today I am going to share with you some experiences that I had and the experience in particular in kidney failure as a result of my diabetes. It would be fine doing this, it's always good to share your experiences, but it is always better to have an aim I doing that. My aim is to provide a graphic picture of why early diagnosis and good and relevant information that allows understanding, and understanding of the consequences of the actions that you are given to choose are so very important. The patient needs to be put in real control. What is the most relevance to me at the moment is the personalised treatment in a realistic environment at the appropriate convenient times that I need it. Making life choices a reality for kidney patients.

I am going to tell you a little story that I heard quite recently. It is about an astronaut who was a really skilled and very technically able talented man, he really pushed himself to the limits of existence and had been successful against all the odds. Then on a particularly routine space mission one day, he crashed and eventually waking up he found himself with no equipment to rely on, none of his technical abilities or scientific knowledge applied in this situation and he had no communication possible with his control team on the ground. He believed he was on an alien planet; he had no way of knowing. He relied on his experience to get him through the difficult situations to help him fight against the odds. He wasn’t prepared for this eventuality. Although he always knew it was a possibility, as diabetics know it is possible to lose your kidney function, he had never really seen it as relevant to him, he was a good astronaut. He followed all the rules, he beat the odds. Unable to apply his usual talents and skills he didn’t look out of the viewing panels to see where he was and find out what he could do about it. Instead he gave into a very basic human instinct in an adverse situation. He tried to ignore what had happened and he gave in to his fear. This illustrates in a very handy way exactly what kidney failure was like for me. I came crashing unexpectedly onto an alien planet, ill equipped to cope.

Now for something about me. Working in the Caribbean I had yearly checks back in Britain in the diabetic clinic and during one of these visits I was referred to the renal department due to a worrying blood result. There I was told rapidly that I needed to start dialysis. Until then I had know idea that I even had a kidney problem. No-one had ever actually mentioned to me that my erratic blood pressure, which he had battled with consistently for over 20 years was perhaps some early indication of this. I was tempted like the astronaut in the story to give in to my fear although of course I know that diabetes affects the kidneys, it did not have any relevance for me I had no safety net prepared. In addition to this my life was rich and varied and not even in this country thanks to the healthcare that I had had for the majority of my life. I had suddenly wobbled and wavered and faded like one of those TV pictures and disappeared. My kidneys failed with recognisable symptoms for me. That would raise the alarm a little earlier and something may have been done. I had reached the critical point and there was nothing much I could do about it. So the referral when it happened was indeed timely and probably saved my life and the advice not return to my job abroad wasn’t very easy to hear. Anyway leaving the medical emergency to one side for a moment, I had decisions to make and I had no way of knowing which way to turn. Fortunately for me somebody pointed out that I still did had choices and that they were still mine to make, they put me back in control. I didn’t like the choices I had to make but I still did have them. There is always a choice! How different my experience may have been if I had only been more aware.

Within a matter of months of course I was struck down by a chest infection and my body filled up with fluid, making me so breathless I could hardly speak when I rang for the ambulance in the middle of the night. I had never even seen a haemodialysis machine until someone hooked me up on one. It is only looking back that I now know just how ill I had become. Well two years on CAPD and thanks to my kidney patients association, the majority of them are in the room today, I was given an APD machine, which meant that my life became a little freer. I travelled extensively in this country with help from my friends and I dialysed all over the place literally.

I didn’t do very well on dialysis, but I did have a heart defect, which similarly was a long-term effect of diabetes. This was only discovered late in the day in the work for transplantation and actually caused me have to turn down one set of organs. Then following the quaintly termed cerebral accident from which I recovered, then came a fantastically timely kidney and pancreas transplant. Just before Christmas. After decorating the Christmas tree so everybody else could have fun. None of this was easy, not in the slightest. But the decision to go for the double transplant for me was relatively easy. It held great risks, there were many possibilities of failure, but it held the possibility also of reducing the effects of the insidious condition. It has always worked for me to find out where I am, to question and challenge the things that are happening to me. It is my good fortune that the people looking after me and around me allow me this freedom.

I like the words of Helen Keller who famously fought the odds and she wrote; “ We are not free unless those who frame and execute the laws represent the interests of the lives of the people and no other interests”. Now my life is once more pretty extraordinary. I wish the same for you.

Jonathan Swift the author of Gulliver’s Travels was making a joke when he tried to say nothing in more words than he really did. It is my hope through all of you here and those of those people who don’t yet know what life has in store for them. I leave with this today. It is the line I live by. May you live every day of your life. Thank You!

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