When the phone rang in early October to let me know that my suitable donor had been identified, I was a desperate case. I stood in the lounge holding the phone, my lungs full of fluid, my skin covered in itching lumps, oils on my scalp, bleeding cracked skin all down my back. I was jaundiced, anaemic, malnourished, hypoglaecomic, hypertensive, nauseous and on the verge mentally of losing the will in the continuously exhausting battle to stay alive. My precious pancreatic and renal transplant operation was not without problems. I emerged from the Royal Liverpool Hospital, just before Christmas in a wheelchair. It took me a year once again to be free of walking sticks; life soon became amazing and fun. Three years later as you have just heard, my transplanted kidney failed, and once again I commenced dialysis.

I moved to Hampshire, just a few miles from the Hampshire/Dorset border. Soon after my move, my holiday dialysis arrangements ceased. I became the responsibility of Southampton health authority. A bombshell dropped immediately! They would only finance two sessions of haemodialysis for me a week. Just three miles west in Dorset I would have been offered my essential three sessions a week. A few phone calls confirmed my own suspicions, without the full three sessions of dialysis, my still functioning transplanted pancreas would certainly fail. I was panic stricken and scared. Ice running through my veins! A few more phone calls later, and I had the irrefutable financial facts written in front of me to support my argument. Allowing my transplanted pancreas to fail would cost the health authority more than investing in one session of dialysis a week. My type 1 diabetes was brittle, destructive and virtually uncontrollable. My medical records proved this!

I wrote a detailed plan and presented this to the health authority. The health authority renal funding department and the diabetes department ran separate budgets. Don’t you know, the two departments do not communicate? I was refused my third session of dialysis. I had no choice but to go cap in hand, begging for my third dialysis session, I called every dialysis hospital I knew. I was lucky, my Consultant at home in Cornwall, John Barnes. ( I will come back to him in a minute). He donated a session to me last thing on a Friday night, keeping one staff there to look after me. So each week I drove 200 miles round trips to dialyse, and every Friday loaded my car with a bag and my dog and drove the 400 mile round trip to Cornwall to dialyse. I was a dialysing patient driving over 600 miles a week to receive essential treatment. I was exhausted! But I was not prepared to sacrifice my precious transplant to petty red tape. If they wanted a fight, a fight they would have. When did this happen, you might ask? 20 years ago. 15? No, five years ago in 1999. I am not here to bad mouth Southampton Health Authority, or indeed Portsmouth Hospital. We have now a wonderful new unit, mauve walls, and dialysis rationing is no longer hospital protocol.

I have told you my personal journey, because I need to earn the right to get bossy. I hope I have done this? Here goes!

This was an awful dilemma, and proved to be a turning point in many ways for me. I realised that I had to start taking responsibility for my own future; I could not afford to leave it to someone else. I needed dialysis immediately and I had to act quickly. I hand wrote a letter to everyone and anyone at Westminster whom I felt might be able to help me. I wrote to every single MP with a Dr prefix to his or her name. Caring not a jot if that was earned in academia, or medicine. I laid out the facts of my dilemma, and asked for their personal comments; I never want a renal patient to know what it feels like to experience that level of panic. Patients - that’s you and me - cannot afford to relinquish responsibility for our futures, to doctors, to the NKF, or Government. We must share this responsibility with them. Your local MP will sit up and take notice of a letter written by one of his or her constituents. Much more powerful if that constituent is a renal patient with a reasonable and informed question. Please do not be intimidated by your MP. Most MP’s are intelligent and compassionate people, who genuinely want to help. If you have ever paid income tax, you have paid their wages; they are your employees. They need your vote and they are there to serve you. Make friends with them, write and introduce yourself, let him or her know of your renal condition, and start pointing out the problems that concern you as a patient. Ask direct questions that require explicit and detailed answers. Let me give you a few examples: Lets assume for one moment that we are all constituents in Sedgefield.

1) Dear Mr Blair,

I am a renal patient currently successfully transplanted, but the future of organ donation and transplantation in the UK is never far from my mind. I feel grave concern for the desperate plight of those still on the transplant waiting list. To this end I wonder if you could offer reassurance on one point that has recently come to my notice. I understand that UK Transplant currently fund in the region 35 donor liaison nurse positions in a selection of intensive care units in the UK for a period of three years. For your information these nurses represent a link between overstretched intensive care units, dealing with the life and death situations every hour of every day and families who wish to participate in the organ donor tissue donor programme. They are the specialists on hand in this highly traumatic environment, which are specially trained to handle both the pressurised staff and grieving families, so that everyone is supported and informed. It is no accident that the incidence of organ and tissue donation has increased since the placement of these nurses. My question to you is exactly how will these invaluable posts be funded at the end of this three-year term. Many posts are already reaching the end of the last year of funding, when UK transplant funding is exhausted. And what measures are in place to ensure health authorities assume the funding of these posts?
As there is clearly this direct correlation between enhanced donation and implementation of these donor liaison nurses, I do see this as a positive step forward in reducing the ever-increasing numbers of patients on the transplant waiting list, and I hope you agree that funding this programme must continue and indeed be expanded so that every intensive care unit benefits. I look forward to hearing from you

Yours sincerely…

2) Dear Mr Blair

Thank you for your extensive correspondence on the issue of donor liaison nurses. I do appreciate your personal interest in this issue, and I am sure, with your continued support we will soon have a full time donor nurse in every intensive care unit. I am sure you will not be surprised to note I have another query of equal concern to me. On a recent browse through the National Service Framework for the renal services, a document I am sure provides a sound and well research basis for improvement to renal services in the UK, I noticed that the document generally suggests plans for improvement, and does not appear to indicate how under-performing strategic health authorities, will be brought back into line according to the standard set out in the NSF.
See page 41 notes 127 for example. Here we see that specialist service commissioners will be directed to ensure that renal services are functioning effectively, and the quality improves continuously, but I do not appear to be able to find the paragraph that indicates what powers these commissioners will have to reprimand under-performance, what is your opinion of this document? How will it offer real and measurable improvement to renal services?
I do really thank you for your continued interest in these issues, I have found it enormously reassuring and encouraging to know that my MP actually takes an interest in my concerns, and can assure you of my vote at the next general election.
My family and all my friends offer their thanks also.

3) Dear Mr Blair

Yes me again, thank you for your extensive correspondence on the issue of our renal services NSF. I am sure, when the health minister answers the detailed questions you have put forward on my behalf, my concerns will be appeased. I know that renal services is a particular interest to you and this in itself I find very reassuring, I do have one final topic on which I would value your opinion, the issue of elective ventilation.
As I am sure you are aware, in 1994 the Department of Health deemed the practice of elective ventilation illegal. It declared, medical intervention must only be allowed if it is in the patient’s own interest. This ruling on electively ventilating patients, a practice that precipitated a 50% increase in successful transplantation in the Devon and Exeter hospital during the years 1988-94, when it was accepted hospital protocol, appears to oppose this approved and wonderfully altruistic practice, in which the parents of an extremely sick child are able to give permission for a healthy sibling to donate bone marrow. This is an invasive and painful procedure for the donor child. What is your opinion on the re-introduction of elective ventilation, as an effective and proven method of increasing organ and tissue donation, and in so doing potentially halving the current transplant waiting list? Incidentally I have it on authority that over a four to five year period, as many people die in this country because elective ventilation is not allowed as died in the twin towers. Sometimes things just do not make sense. I look forward to hearing from you and promise to leave you in peace now for a few months.

With very kind regards,

I spoke with John Barnes earlier this week, when I realised I better get something down in writing for this talk. He and I were speakers at a conference earlier this year, and he spoke about his experiences as a young doctor in one of the main teaching hospitals in London 20 years ago, treating renal patients. His talk made me sit up and listen, I can assure you! I asked if he would mind repeating his experiences today as I believe they represent a stark reminder of just how bad things were not so very long ago. I assured him I would not quote him if he preferred to remain anonymous. He is happy to be quoted. My knight in shining armour! John Barnes recalls (I quote) “ I genuinely remember some of these patients by name. I can picture them now. The unofficial cut off age was 40 to 45, no diabetic patients; one patient was turned down because his wife had depression. I got into trouble because we secretly referred him to another unit for a second opinion and they rang my boss. One patient was turned down because his umbilicus had fluff in it! And was thought therefore to be unsuitable for CAPD. The decision was severe and dialysis places very restricted.“

The worst bit was telling them they had the sort of kidney trouble that would not respond to treatment, a complete fabrication! Well at least I do not have fluff in my belly button! I have one of the sticky out types! Hands up here if anyone here over the age of 40 who has received any form of renal replacement therapy, transplant or dialysis. I turned 45 in August, so my focus is somewhat sharpened. My feelings about what the future holds for us hover somewhere between concern and utter desperation. I have in fact lost the function of that precious pancreas transplant, and because of the nature of my diabetes once again I am a statistic on the transplant waiting list. I love my life, I have more love and laughter in my life than I perhaps deserve and I want the opportunity to grow old one day.

We, you and I must not lose track of what is happening to our renal service. We owe it not only to ourselves and to each other, but also to the thousands of people, some of them children, who do not know that renal failure will be part of their lives. I know what it feels like to write a letter after a dialysis session when your blood pressure is in your boots somewhere and you just want the world to leave you alone. I have had to rest my head on a pillow on the kitchen table in order to be able to put pen to paper and fight my corner. It is not easy, but we have to commit to the simple task of writing letters, if each of us just wrote one or two a year. You have my commitment to this for us today. Pick up a biro and scrap of paper, it does not matter if the spelling is bad, or that your handwriting is not very good. What matters that we keep our eyes open and our ears to the ground and understand what is happening to our service. We must keep renal services at the top of the political agenda. If we do not and investment fails us, which age group do you think will be the first to be refused treatment? I hope and I pray that research coughs up how to grow you own replacement organs from stem cells, or the technology to disable the genes that pre dispose us to renal failure in the human genome project, but we do not have these yet.

So until we do have real alternatives to dialysis and transplantation, we have to concentrate all our energies on what we know today. What we know today is there is insufficient funding been ploughed into renal services to meet the predicted take on of ESRF patients over the next 10 years by a very long way. I hope I have been bossy enough? I know I have delivered a hard message today, which may well be discredited by politicians later on. All I ask is that before you believe what they tell you, you have to ask yourself if sufficient money is not ploughed into renal services over the next 10 years, who has the most to lose? The politicians, or, us?

(Click here to go back to the summary page for this speech).

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