Could I ask Dr Higgins, are these people who are having these Blood Washing, are they people with positive cross matches? That’s the first question and the second thing is: are they having blood washing or imnunoabsorbsion.

Dr Higgins Reply:

Positive cross matches if you like is a medical term for the test in the laboratory that tells whether the antibodies even in absorbs ion is a medical term where instead of perhaps filtering the antibodies out, you would absorb them onto a column. It is one of the techniques that are available. We have not got time to go into it. They are different machines that different units are using in slightly different ways that have some advantages and disadvantages, according to what antibody you are trying to remove.

Simon:

The reason behind the last of those questions is because I actually had Goodpasture’s Syndrome and I had immunoabsorbsion and one of the big problems was finding somebody who could actually operate the imnunoabsorbsion. As I understood it at the time about seven years ago, there were only about 10 nurses in the country who could actually work it and also there was a problem of obtaining the filtration devices. I think there were three in the country and it would have taken them three or four weeks to get them manufactured in Sweden in order to get one that worked for me.

Dr Higgins:

The machine that we are using is Steve Bailey's base in the Midlands, it is close to, we can get a machine easily if it breaks down. It is loads cheaper than the particular type of immunoabsorbsion you are talking about. I did use it in the past in London. I have chosen not to try and use it for these patients, because it would not be suitable for people with blood group antibodies.

Question 2
Ivan Rapperport
Royal Free Hospital KPA

Dr O ‘Donoghue, you said that creatinine was not a good marker for kidney function, but GFR is. Can you expand on that please?

Dr O’ Donoghue Reply:

Serum creatinine is based on the measurement in the blood, that’s a breakdown product of what anybody has in their blood is dependant on what your muscle mass is. So muscle mass is different between men and women and different as people get older. So as you get older you lose muscle mass. So for the elderly, a serum creatinine might be in the normal range, the patient may still have chronic kidney disease. GFR stands for Glomerular Filtration Rate. The way in which we measure the function of the kidney and fortunately GFR equates to % kidney function. So a normal GFR is about 100. The GFR can be measured using very fancy tests, Isotope tests etc. You can estimate the GFR from the serum creatinine which is a normal creatinine if you know the patient’s age and gender, then you can calculate the serum creatinine, so the laboratory can actually give you the GFR, % kidney function, and it is a much more sophisticated measure of kidney function than just a simple creatinine.

Question 3
Ben
Nigeria

I had my operation nine years ago and there was a problem with my creatinine clearance ... going high then going too low, which I find difficult to deal with.

Dr O’Donoghue Reply:

The creatinine clearance is the same as GFR effectively. So its % kidney function. You can have a clearance above the normal range, but people with diabetes early on in their kidney disease often paradoxically hyper filter, so if you hyper filter then you will have a creatinine clearance above the normal range. There is also an issue as to what is a normal range? If a normal range is calculated from a white population, than that won’t be a normal range for a black population. So that is an issue, there is also an issue about different laboratories having different normal ranges, which is a problem for creatinine , for albumins etc, so in comparing results that can be a problem.

Question 4
Chairman

Can I ask Anthony his experience of the blood washing technique? Was it similar to Alison’s?

Anthony Reply:

Yes, very similar to Alison’s. I suppose the differences were after the transplant, you were very tired. I think when it was really felt tired it was very similar with dialysis on top during the week, it seems you were permanently tired all of the time.

Question 5
Jenny Scubbings
Oxford

I had plasma exchanges in Leeds actually, it is a long story. That was for an antibody disease vasculitis. Is that the same as antibody washing?

Dr Higgins Reply:

Absolutely, you could use the same kit interchangeably. As we heard previously, What we are trying to do with the machine that is around the back and the one we are using is to treat much larger volumes of plasma every day, because I don’t think the technology treating three litres of plasma a day in the traditional way is quite good enough. We got up to 15 litres a day with Anthony, who even if you go round the world literature and look at all the patients they have transplanted in the USA, Anthony has the world record for the amount of plasma treated. We got through 178 litres in the month around the transplant, which is over 50 times the volume of plasma in his blood.

Jenny:

Would the antibodies recur in my body, would that be a question for having more blood washing?

Dr Higgins:

With vasculitis, once your kidneys have failed, it is very unusual to get that particular disease come back. Very unusual after a transplant and if you don’t have antibodies before a transplant it is possible, but unusual to develop problems with antibodies after the transplant, but we would treat with antibody removal. So most people on the list without antibodies, if they get a transplant it’ll go through in the normal way. What we are talking about here is perhaps a fairly large group of people who are a bit different. Vasculitis should not come back in general.

Question 6
Tim Statham OBE
National Kidney Federation Chief Executive

Earlier we heard the Minister report that between 1998 and 2002, the Government had planned 450 new dialysis machines, a target which they exceeded, but just to put that announcement in context, one should know the NKF published a report called Renal Revelations, which is available on the NKF Stand. It predicts that just to keep pace with the rise in patient numbers we don’t need 450 new, or replacement machines over a 4 year period, we actually need 483 new machines each and every year for the next 10 years.

Dr Higgins Reply:

There are parts of the country where if you got kidney failure you'd be referred to another unit, because there was no the space. So people are still being shunted around the country as new patients, because in some units they cannot be treated.

Question 7
David Griffin
Portsmouth

I was particularly interested in Donal O’Donoghue’s presentation about the link between heart disease, kidney disease, and diabetes and it seems to me that primary care has a huge part to play in the early detection of these things and could be instrumental in limiting the onset of these diseases, is there anything you do as a renal consultant to influence doctors in primary care to watch out to recognise the early symptoms of these illnesses and do something about it at an early stage?

Dr O’Donoghue Reply:

I think there is a lot we can do, and I think it is mainly education in the first instance, because most people with chronic kidney failure don’t have any symptoms of their chronic kidney disease and therefore it is silent, and in a way that’s helpful because they are not in distress from their kidney, but people don’t know and the healthcare professionals don’t know. I think the first thing we need to do is start to as I say thinking GFR, thinking % kidney function, get laboratories to report in % kidney function and that will highlight the fact that there are a lot of people who have kidney disease who are not yet identified. So I would like the GMS Contract having reporting in GFR as part of it when it is revised. I would like to see local diabetes and coronary heart disease implementation teams, now it obviously up to the individual localities to decide how they address the priorities, but I know and I think we know now that five % of the population wherever that may be will have chronic kidney disease and it is one of the demands if you like of the NSF that all patients with chronic kidney disease have an integrated care plan, so the only way to achieve that I think is to have an electronic base integrated care plan so that people don’t find out that they have chronic kidney disease three months before they start dialysis if there is a family history. I mean why wasn’t the transplant done before that? That’s the crying shame and we all know plenty of people, who arrive later than they should do, and arrive in an unprepared way.

We can tackle that by working with primary care and the other big part in raising the awareness locally with your own GP’s and other health care professionals there and locally with PCT’s and locally with political groups and writing letters and writing letters focuses people’s minds and questions have to be answered in what ever house that may be. There is a big challenge ahead for us to do that and there is a big educational challenge within the healthcare community to make people realise that kidney disease isn’t rare. You know when I was at medical school it was not taught as well as it might be and we perhaps didn’t know if this is new information - I don’t mean to be critical of the past. Let’s look to the future and we can slow down the rate of kidney disease. There is a flip side to it. The flip side may be that because we're so good now at improving cardiac outcomes it is possible that by improving cardiac outcomes more people will survive to develop chronic kidney disease and ESRF, so I don’t see over my professional working life, which is I guess another 17 years, that the rate of chronic kidney disease will go down. Over the next 25 years there will not be a reduced demand for ESRF services. The bedrock of ESR services is haemodialysis capacity, and until we have sufficient capacity for haemodialysis and not every machine is not flogged to death, and the assets are not been sweated all of the time. Until we reach that stage I will always wonder, do we really have choice for people? Will they be put on the wrong modality; will they be shunted to different units?

So I think that haemodialysis capacity has to continue to grow and will need to for at least 15 to 20 years.

Terry Feest Reply:

I support what Donal has just said, but what all the doctors and physicians are about to do is produce guidelines about the various stages, which will guide GPs and their nurses about detecting kidney disease and which group should be looked at and when they should seek further help. It includes advice about estimating GFR. So there are guidelines about to come through and some of the guidelines from NICE, include these two, so we are trying to get the message out, it has got to get outside the renal community. We have to get to the GPs and the general physicians to recognise patients, in order to let us see them. We just got to keep plugging the message. I think when the new guidelines come out; the danger is that the renal units will be swamped with five % of the British population.

Question 8
Don Taylor
Chairman of Hammersmith KPA

I would like to ask Dr Wilkes, has there been any consideration given to the payments of out of pocket expenses or loss of earnings to a live donor?

Dr Wilkes Reply:

Well yes and of course there are a lot anomalies in what we think of as a suitable payment for compensatory payments for time off work and for expenses. Most of which don’t really match the amount that people should deserve and get for that kind of commitment. Of course we have anomalies between other types of donation around sperm, eggs, blood that don’t really sort of fit with the general concept of altruistic donation. I think with anybody who might want to consider payment for live donation, the fact is we are talking here about something that reflects a market, people might say why don’t we pay more for blood? Well there isn’t much of a shortage but with organs there are. The whole process of actually compensating people fairly as opposed to paying them for their organs is something that hasn’t been really properly developed. There isn’t an alternative to payment because it only reflects compensation for a relatively small amount of the cost that is involved in being a donor.

Hany Riad Reply:

Although the Department of Health approves of compensation of reasonable expenses and loss of earnings for live donors and produced guidelines, they cannot be enforced and from time to time we have had difficulties getting donors being compensated and the discussions with the PCT’s and Statutory Health Authorities can be difficult at times. We do ask people if they are to be compensated to let us know as soon as possible because it is a process which can take time.

I promised Dr Wilkes I wouldn’t ask him any questions, but when he makes statements that really get me going I feel I have to say something to him. First of all one of the points which you made was that it was important that we should think through the reasons why we actually are for or against organ donation and I think the implications of what you were saying is that we should think about the reasons why organ donation, payment for organs should be something we could well support. Now I think that there are two issues here. There is first of all how is that going to affect the advantages in the current system and what are the problems going to arrive if it is undermined? So the sort of questions I would put to you are; will those who are currently giving organs altruistically be de-motivated? Will they too expect payment? Who will pick up the bill? Will it be the NHS? Where will it actually come for e.g. from the enal budget in order to pay for these organs? The second group of questions is around a regulated market. In a regulated market as there is now within the NHS there are indeed private providers. When you actually establish private providers within a regulated market you establish vested interests. Vested interests have a tendency to actually want to make themselves keep going so therefore they consume resources which would normally be directed say, for example into other ways of solving the problem such as; stem cell research for developing kidneys and that sort of thing. So those are basically the group of questions around helping you with this idea.

Dr Wilkes Reply:

Well Simon you are a politician so I wouldn’t expect you to keep your promises! I think all those points that you make are absolutely right for the debate. I think there is a risk that though I don’t think that altruism, as it exists at the minute, is allowed to develop. Obviously because we have quite a lot of regulations and restrictions on how many people can actually altruistically give. I am still not that convinced that is going to produce a huge wave of donations even if we took some of the controls off them that would even begin to solve the problem. I think one of the things about the regulated market in this country is that we are in a system in which you could see this kind of process be better regulated than in most countries, we have a single purchaser at the moment anyway which is the NHS, we have got experience of regulation through bodies like the HFEA which is going to morph into some new authority if what we heard this morning is correct. I think we have some idea of the kind of potential cost benefits of going into this kind of market. I take your point we shouldn’t do it at the expense of investigating what is far more important, which is other methods of treatment and prevention. These are perfectly valid points but just haven’t been addressed yet.

Gerard Boekhoff Reply:

I said before that I felt very privileged to be here and you can imagine it was very interesting for me this morning to listen to your Minister of Health, she seemed to be a very nice person to me although she said some things that I felt did not make much sense. When she talked about presumed consent and Michael said in his speech “You have to add another dimension to this question about paid organ donation.” I think that the lack of organ donation, the lack of organs for donation for transplantation. first of all it is a problem that society has and as long as your Minister of Health says things and I’m sorry but I don’t want to be rude or whatever that on this subject about presumed consent it doesn’t make sense at all. She mixing up all kind of things, it didn’t feel good that I heard her speak about the French problem with the cornea and taking the corneas from children and linking that to presumed consent didn’t feel that good for me. As long as politicians - again I am sorry if I am too rude - don’t have the nerve to go one step further. I think you cannot throw the problem of the shortage of organs over the defence of individual problems and try to seek your own donor, whether it is a live donor or whether it is a donor with money. I think first of all, all of society has an obligation to do everything in its power and I think it is possible to solve the problem of organ donation and then we might move to another step. Take it step by step.

Hany Riad Reply:

Wouldn’t you just like it when it is like question time when people in the panel don’t agree on what is exactly what is going on? I see there is a lot of support here for presumed consent. Dr Wilkes and others did indicate their support for presumed consent. I have a problem with it and I would like to share it with you. You can shoot me if you want. If you want to shoot you have to aim properly so you do not hit people in front and behind. I do this because I am the one at two in the morning actually in theatre operating and taking organs out from the young and old and all sorts of ages. If you are going to consider presumed consent or opting out system you have to have a change in the law, is that correct? If you changed the law, the law has to be obeyed. correct? If we have a presumed consent in my simple understanding, I will give you this case scenario, which will be not infrequent. An 18 year old crashes his motorbike and is in an intensive care unit brain dead, Mother sobbing her heart out she is told her son is dead. Then ask if she gives permission for organ donation, she says no. He has suffered enough. We hear this all the time, would you really like me to go to theatre and take his organs from this 18 year old? How would this family feel if in two years time another member of the family have to go to the same intensive care unit. These are the problems I have; either we say because as far as I am concerned if you change the law you have to obey the law, means the Mother has no rights to say no. If we are going to say well if the Mother says no and we are not going to do it, we are opting in. Why change the law? Can somebody explain this to me?

Gerrard Boekhoff:

I think there is a little misconception here. First of all when there is a different law he don’t ask the relatives for consent, of course you go and talk with the Mother in your example and if the Mother says “ No” In my opinion it is quite simple if the Mother says no and doctor if you do it I go out and jump onto the first train to Birmingham you are a doctor and you are obliged not to take out the organ and I mean this is not a matter of grabbing organs from everywhere you are still a doctor and what the Minister said that taking out the relatives in an opting out system, that is bullshit! I’m sorry to say that. You always talk to the relatives even if it is an opting in system or out system and of course you listen to the arguments of the relatives, but what makes it so successful in Spain is that when you change the law and when you change the system to a presumed consent you say as a society that organ donation is the normal default option and what is it all about. It is all about the people who don’t want to donate and we want to respect them. That’s what you do in an opting out system.

Question 10
Mark Murphy
Irish Kidney Association

I must thank Dr Wilkes for his comments about the Irish Kidney Association and the fact that we run the donor campaign, thank you. We think we are more successful than the medical profession in seeking organs for donation because it is coming from the patient base and I would ask you to consider that as one item. One thing I feel that you haven’t discussed is a potential option of presumed or required request. There are a lot of anomalies that say within Ireland about the intensive care units that produce donors and those that do not. There is strong evidence. I criticised one intensive care unit at the beginning of this year for not producing a donor for the last five years. They have since produced three donors so far this year. I would tell you the problems potentially in your intensive care units the anomalies which are there in my country. I strongly suggest that there are very similar systems and might well be in your own.

Question 11
Max Bacon
Addenbrookes KPA

Chairman Mao said that the long march starts with one step. We haven’t looked at the first step. I think the general audience here is in favour of presumed consent. We as patients are the interested people - if we don’t push it who will? I thought that the lecture this afternoon gave an excellent balanced view about the advantages and disadvantages and we should set up a working party to produce an NKF paper on what the NKF views are, which would be a summary of all our views from the Associations. Now the difficult questions that were posed by the gentleman in the middle here would need to be answered in such a paper because clearly the long march, the 5,000 mile march, is influencing public opinion and we might have to get a PR Company to help us with it because there is this negative view taken from the unfortunate events in Bristol that we have to overcome the perception and I think that is a long term five year or so view. We need to be putting over the 450 people who are dying every year because we are not giving them a transplant and I think that we need to be seeing to be having a view on this, which has been agreed by the whole Federation.

Professor Malik Reply:

I have an interest in this problem of organ donation partly because we in Manchester have the first organ donation scheme that the first card scheme for doing this and I have watched this very closely here and abroad. I think the two main issues in getting adequate donation from hospitals at the moment have been identifying the potential donors and the main thing which happened in Spain was not presumed consent. A doctor put in place a structure for finding donors in hospitals by paying consultants to be able to go round and do that. That was the first issue and the second issue is the rate of refusal. It is nearly half of the potential donations and if these two issues were put into place or addressed fully then presumed consent would be less of a problem. If you impose presumed consent that nearly half of families at present not accepting donation would feel aggrieved and I don’t think that is a terribly good thing in society to do. The second thing I would like to say is about the problem, which came up later in what Dr Wilkes was saying about paying for donors I do hope that this debate will be taken further and I entirely agree with him that the ethical basis of the present position is unsound. Having been on ULTRA, which was the unrelated live donor association, we became very aware how difficult it was to know with related or unrelated apparently entirely free willed donations whether there had been some inducement of some sort in place. That remains a worry and that has not been addressed fully and the whole issue has been tackled in a very patronising way and a full debate on that is over due and I very much welcome what Dr Wilkes said about that today.

Dr Wilkes Reply:

Well I think that is very helpful and I think it is a lot more powerful if groups representing patients make that point rather than we people like the BMA do quite honestly. I just wanted to come back very quickly on presumed consent without labouring too much the point but it has been suggested that people will feel kind of resentful because organs will be taken without the proper discussion, but I think what we just heard about the default position being donation rather than not. Donation is the important cultural shift that you get and we are always talking here -what’s the short hand called? 0 the soft version of presumed consent with which there is a check with the family, but there is a subtle change here because instead of going to the family to get permission which is very traumatic. As we know it produces a very high refusal rate for a variety of reasons what you are actually doing is going to the family to check that there was no refusal there from the person themselves and that is a different way of approaching the family hopefully at a time when people will be more aware that there was a kind of default donation position. The only final thing I would say is that certainly we would have to be extremely careful that the process didn’t fall into the trap we found out about in France, which is a perfectly valid point because there was a problem there we know about 2% of people from other countries will opt out. We must have robust systems perhaps using the organ donor register. My final point is that there is another group who we must remember. Some of the saddest letters we get at the Transplant Partnership are from parents of children and young people who have died who were never asked and their sense of loss I think is the most profound of all.

Question 12
Francesca Crosier
Royal Free Hospital KPA

As a CAPD patient, I was very concerned to read in one of the kidney magazines this year about the costs of maintaining transplant patients, CAPD patients etc and that the costs for me at the moment is £20,000 a year because I am on CAPD and it could be lowered to £6,000 if I became a transplant patient. I feel very strongly that hospitals are going to pressurise people like me into doing transplants and I wondered if you had any views on this?

Professor Malik Reply:

You are worried about the cost? I don’t think we would force anyone to have a transplant. Obviously patients before they come onto the list, we sit down with them, explain benefits of it and risks. Again it’s all the known problems which can occur with dialysis, we all know that quality of life with a functioning transplant is far superior to quality of life on dialysis, however we do have patients who opted to stay on dialysis and wish not to be transplanted and I don’t think patients will be forced to have transplantation at all. Before you go to theatre to have a transplant you have to sign a consent form and they would not let you through the doors without signing the consent form. You simply don’t sign it.

Gerarrd Boekhoff Reply:

I do share your concern on that and there are two sides of the coin and I think the NKF, the same as our association, should be aware of that and I think it is a very good point because the whole world and especially the politicians and the Government seem to go on about money and it seems to be about finances and economics. It is a balance because as a patient association you have to know the world and if you want to lobby or if you want to stand up for your patients you have to go with it and you have to show figures like has been done today, but you make a very good point there. If I’m in discussion in Holland with politicians and it is too much about economics and with every figure I give and they give another figure, then I tell them the cheapest patient is a dead patient!

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