Thank you very much for inviting me here today. The title I was given was the ‘Future Shape of Renal Services’, but I have changed that title, because people with chronic kidney disease need a whole range of services.

Taking some information form the NHS Plan, the future shape needs to have the right people in the right place at the right time. I did not write those words! I did add with the right information, but what did that mean? Well hopefully at the end of my talk I will have given you some of my thoughts on what that means. The right people mean the people with the right skills and competence for that patient at that particular time. So it might be a CAPD nurse, it might be a physician, it might be a general practitioner, depending whfat the particular issue may be. The right place and time, well the right place maybe the results of your FK506 levels by a text message. The right time is also the right time in the patients journey as well as the right time of day that is convenient for you. But information is crucial, evidence- based so we make the right decisions of how we manage a patient with Chronic Kidney Disease. Very important for the renal community. The patient’s record, having that available at the same time you see the patient, a novel idea you may say, but clearly it is essential. Information for patients to make the right choices.

If we are going to get the shape right, we have to understand the patient pathway, the patient journey, and I am a physician and I am going to talk mainly from medical perspective, but that is not to diminish the other aspects of the patient’s journey and the patient’s pathway. Having chronic kidney disease and certainly having advanced kidney disease and end stage renal failure receiving dialysis and transplantation, has a lot more impact on the patient and the family than purely the medical natural history.

I am going to talk mainly about earlier chronic kidney disease, but it would be inappropriate I think not to say some things about dialysis and transplantation to this audience. Chronic kidney disease is common, it is not rare. Premature cardiovascular disease, heart disease, stroke, are major factors in chronic kidney disease. Those are diseases where we know we can make big impacts. We also know that the sort of treatments we used for cardiovascular disease slow down the developments of chronic kidney disease and I know there are people in the audience who are well aware that chronic kidney disease can be prevented and there are people in the audience on dialysis or with a functioning transplant who, had the services been better at some point in the past would not be at end stage renal failure. I do not have to say to this audience that preparation and choice is the key to a good outcome. The challenge for us is to actually to integrate the pathways and partly that’s a technical IT challenge, but the biggest challenge is the cultural challenge within the healthcare community and within society at large. This chart you see describes the growth of dialysis and transplantation over the last twenty years. Back in 1982 they were perhaps 7,500 people in the UK on dialysis and in by 2002 there were 37,000, a big growth. What do these statistic mean? Most people in this room are actually part of these statistics. Each of the patients shown on the graph has their own pathway and journey and they are all very different. Within those journeys there is a lot of bravery, there is a lot of good stories of people climbing mountains on dialysis, having babies after having transplants, a lot of very positive stories, but I think we also all know there is a lot of pain, there is a lot of arduousness for people with end stage renal failure, there is a lot of stresses within families and break up of relationships because of the strains of renal failure.

The context of which we now think about the health service is determined by the policy that comes out from the government, and perhaps the most important document that set us off on a new train was the NHS plan that describes how the services would change over time. Another key document is Shifting the Balance of Power that has moved the power from the centre to the periphery to primary care organisations. Shifting the Balance of Power has made a big difference to how services will be developed. The core renal document, the National Service Framework published in January of this year, if you have not read it you should. It is easy to read it in about an hour, less than 50 pages. Equally important are Saving Lives, Valuing Donors and the information strategy.

Just to say a little bit about the NSF part 1, there are 5 standards and 30 markers of the best practice. It is patient-centred, and this standard is an over arching standard that covers part 1 and 2, and core to it is actually integrated care plans, so every patient will have a care plan. The same care plan for the diabetic aspect of care, for the cardiovascular aspect of care, and the renal aspect of care. One care plan used by all the professionals held by the patient.

Preparation, and choice. Managed by the multidisciplinary team for a year before requirement for dialysis or transplantation. Pre-emptive transplantation listed 6 months before the requirement to start dialysis. Access placed 6 months before dialysis is required. Dialysis interchangeable. Choice for patients, decent transport systems, and achieving quality standards. And transplantation appearing to the NICE immunosuppressant guidance that’s has been in the news recently. Reducing the cold ischaemic time, so there is no delay into getting to theatre for transplant operations which we know can effect outcomes, and adhering to the principles in Saving Lives and Valuing Donors.

Why is it important to have preparation and choice? This is why it is important, there things which we can do. For people who are not at end stage renal failure, we can delay progression. We have good treatment what have been shown to do that. A lot of that is in controlling blood pressure. We can prevent ureamic complications, a lot of that is around vascular disease. We can modify cold morbidities that are largely vascular disease. At the appropriate time patients need education to make informed choices about dialysis, transplantation and conservation management. So there is a lot to do. Now if we are going to offer choice, we need capacity. Capacity in terms of replacement therapy is haemodialysis capacity. 113 Birmingham Patients chose peritoneal dialysis, but at the end of one year, only 67 were on PD, and at the end of two years only 47. Largely, because they have had to transfer onto haemodialysis. So haemodialysis is the core of providing a high quality service. For haemodialysis we need vascular access. Most people in the room will be aware of this. Only two thirds, 66% of people on dialysis have an AV Fistula. We have an over reliance on catheters compared to other countries. That over reliance on catheters results in septis. Septic episodes carry a risk of mortality, and certainly morbidity also. A major risk for people on dialysis is cardiovascular disease.

I want to mainly talk about the rest of chronic kidney disease. That’s to talk about the National Service Framework document part 2, and when we were asked we weren’t sure when it would be published, and it’s not yet published so I can only give you speculation but the rest of the iceberg is very large. We know that diabetes is a cause of 20% of patients starting dialysis in the U.K. We know that diabetes is set to double over the next 25 years, and there’ll be 150 million people with diabetes by 2030. Hypertension is increasing and ethnic minorities are ageing at the same rate as the rest of us, but demographically, those communities have, in certain parts of the U.K. been quite young, and the elderly were all getting older.

Stages one and two of chronic kidney disease, to make a diagnosis, you have to have a structured abnormality of the kidney or evidence of protoneuria. For stage 3, less then 60 % kidney function, and the stages beyond, you can make a diagnosis or a label of chronic kidney disease on the basis of the GFR percentage kidney function.

What about the U.K.? Is it common? Well it is common. Look at stage three of chronic kidney disease, people with percentage kidney function between 30 and 60%, 4.7% of the population, almost 1 in 20 people, have chronic kidney disease. Stage 4, more advanced disease, perhaps where choice needs to be made, preparation for dialysis needs to be made, much less and obviously, a minority of people are on dialysis or transplanted. So why is it surprising to us that chronic kidney disease is so common? Because we’re thinking creatinine. We talk about watching creatinine when you come to the transplant clinic, we’re thinking that way. We are surprised when we find out that someone with a relatively low creatinine has advanced renal failure. Because creatinine is a poor marker of kidney function and we should look at creatinine clearance or GFR because in small and thin and female a normal seeming creatinine may actually mean that you’ve got quite substatial renal impairment. In comparison to people with large muscle bulk, young male, a normal seeming creatinine, a normal renal function. So creatinine is a poor way to think about kidney function.

Well a lot of chronic is asymptomatic, so why is it important? Well this is why it’s important…In patients under the age 60 with unreferred chronic kidney disease there’s a 34.5 times increase of death compared the standardised mortality rate. So people are dying with chronic kidney disease, even though they are not progressing to end stage renal failure.

Many say we do not have the evidence in chronic kidney disease, but in fact we do. There is evidence in the large cardiovascular trials that chronic kidney disease is a marker for early cardiovascular death and also that chronic kidney disease is amenable to treatment in terms of that increase in vascular risk. In data from the Hope Study and it looked at the use of ramapril an ACE inhibitor in patients with cardiovascular events, and what you can see in the people with normal serum creatinine is that the use of ramapril is associated with a reduction in the cardiovascular events. In people with early chronic kidney disease with creatinine 124 and greater the improvement is even better. So we have evidence of how we my treat chronic kidney disease. We also know from data from the United States, it may not be the same in the UK, but the risk stage 3 chronic kidney failure. There is a risk that you will progress renal failure over 5 years, a 1% risk, but the risk of death is actually 25% and most of that is cardiovascular death. At stage 4 it is a considerably higher risk of progression to end stage disease i.e. 20%, but again, vascular disease is a major component here. That is not surprising, factors from our own data again if you look stages 2, 4 and 5, this is the percentage of people with hypertension in those stages, 80%, 90% and 90%, have hypertension and that is a major driver for cardiovascular disease and that’s a major treatable factor. If you look at the number of people with known cardiovascular disease in the general population, 5.4% at stage 4 chronic kidney disease above 50%.

What about treatments? Anybody with diabetes, heart failure, hypertension there is a good reason to be on an ACE inhibitor. So not everybody can be on them for a variety of reasons, but most people in these categories should be treated with this treatment. How did we do? 50% of people with diabetes were on an ACE inhibitor, less than 50% in these other categories. So perversely, the high risk group, people with chronic kidney disease do not receive the quality of treatment as the general population. We are afraid of kidney disease, we are afraid of drug interactions and therefore people do not get the quality they require there is a big educational need here.

Lets look at a typical general practice. What we would expect to see a practice of 10,000 - six people with stage 5 disease, three on dialysis, three transplanted, 60 with stage 4, 380 with stage 3, and even more with earlier chronic kidney disease, or at risk of chronic kidney disease. How will those people be managed? I have tried to show that by splitting this pyramid into self care, generalist care, and specialist care, really to talk about the proportion of care that might be given. Clearly there is a lot self care up here in dialysis and transplantation as well, so it does not work as well as I would like, but the point is that specialist care is only part of the whole picture of care for people with chronic kidney disease. So I hope I have been able show you that chronic kidney disease is not rare. It is actually common. It is actually not complex either, it is multifaceted. There are a lot of elements that need to be put together, but it is not rocket science! There are a lot of overlaps, all people with early stage chronic kidney disease need these type of therapies. These cardiovascular risk reduction therapies, education, exercise.

People with stage 4 are developing anaemia, acidosis bone disease, these need treatment by themselves and preparation and choice for dialysis and transplantation is required at this stage. We all know what is needed at stage 5. We look at the parallels, people with diabetes, they all need this, delivered in primary care largely and the complications including, kidney disease requiring services. Look at the overlap with coronary heart disease, and its NSF. With more resources than our NSF. All need this type of treatment and a lot of therapies, such as anticoagulation, treatment of heart failure, can be delivered in primary care. Of course we need radiology and cardiac surgery and that is not going to be delivered in primary care. So what do we need to do if we are going to improve our management of chronic kidney disease? I think we need to think in % kidney function rather than serum creatinine and the laboratories can give us the results in this way. Then we can detect people early. I think we need to link the implementation of diabetes and coronary heart disease and the renal NSF with chronic disease management. A lot of that is sharing IT systems and I think we need to develop awareness of capacity.

So if you try to put that all together and you come back to the right people in the right places at the right time with the right information. I think it boils down to two things: The people and the information. I think we need to have a NHS staff with a good strong morale. We need to improve the morale of the staff in the NHS, and hopefully some of these initiatives, knowledge and skills framework and modernisation of medical careers etc, will improve staff morale. Actually the big thing that improves morale is when patients say, “ That was a good job”. When people write to you it has an enormous impact on the morale of the staff. Why do people get up in the morning? They get up in the morning to go to work to get paid of course, But why do they want to do a good job? It is because the interaction with patients and people like you. Patients are crucial to providing a quality service. It is important that patients are well informed and have choice. That’s is difficult! There are cultural barriers, there are age barriers and physical barriers to that. We need public awareness if we are going to improve transplantation. This needs to be all based on making good quality decisions, increasing our evidence base. Basic science has brought us EPO. A revolution! It is bringing us other new immunosuppressive, drugs to treat phosphates and calcium imbalance. We need to implement them properly also. We need to know how we do it. We need to have an integrated care pathway. We need to use that integrated pathway as patients, using patient view and I think that was on show last night. Thank you very much.

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