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Pre-dialysis - the Benefits - (full conference transcript)

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Maddi Pipes

"After hearing what has been said today, I feel a little bit humble standing here. I was asked to do this talk, which I am more than happy to do, because it is part of my role, and I enjoy my role immensely. I feel very privileged to have such a role".

The Past

Talking about pre dialysis, I cannot talk about the benefits and the future of it without really touching on the past. When I first started nursing, as we have heard mention before, home haemodialysis was the only kind of dialysis at home with very long hours. CAPD was just in its infancy. Patients that I came across felt, in some senses, they were lucky because the very old at that time did not get any dialysis in many places, only in the places such as Manchester and perhaps in London. There were strict diets; patients were admitted in a very poorly state to hospital. There was no such thing as pre dialysis policy at all. You were very lucky if you received any information at all. You were very lucky to receive any information on your forth-coming treatment, until you actually got to the stage when you actually needed it. People were often admitted to general wards. Their operation was treated like any other operation in the hospital with little thought to the fact that with this treatment things were going to change your life. There were no Nurses with Renal Courses - that was only just being thought about.. When patients came into hospital, they were often confused, nauseated, weak; some had pain, severe headaches, and poor concentration, exhausted, because there was no Epo then. You were anaemic, you had blood transfusions and you had to have them every few weeks.

When CAPD did start, and home haemodialysis was coming more into its own, people were trained in the hospital; they were trained as in patients; very often with very long patient stays. They were ill when they came in, some patients spent as much as three months in hospital before we could send them home on any treatment, whether it was hospital based,or home based. There were no specialist nurses dialysis-wise. There was not much in the way of a programme of care for the patient's. The medical staff looked after them, and the medical staff told the nurses what they needed to have. That is how it was. You did what you were told to do, if they said they needed Peritoneal Dialysis then they got that, and you looked after them, and you did not question it too much. If patients were sent to look at a unit, it was usually just as they were about to start dialysis. Often they had no real understanding of what dialysis meant. They would be sent up to the renal unit, just from clinic to have a look round the unit. Again, twenty years ago many of the patients on that renal unit, because there was not any EPO, they looked extremely poorly many of them. So to tell a patient to look around a unit were there was blood lines etc was not very pleasant, very frightening. There was no counselling really in this area, nobody took much notice of the feelings of the patient into account, about the operation, about the future changes in peoples lives, unless you were lucky enough to be part of a large unit.

Dieticians, renal ones, were a rare commodity, so again very few had them or came across them. No consideration for what can be life-changing treatment. KPAs were only starting then in a much smaller way. Little or no discussion about dialysis itself, what it would mean in the future to you? So this was the scenario you got, often patients even if they were able to walk into hospital of their own accord, had no idea what was going to happen to them. If they were very lucky they might have had a good doctor who had time to spend with them, or a nurse who knew a little bit more, because she had worked there a little bit longer. In general they were walking into everything blind. They did not know why it was happening, didn't understand about their kidneys, had been going to clinics often, as requested, to have their bloods done; how are you today? How are you? See you at a later date. That was more or less, I would say, for a good deal of the country. Like I said if you got more than that you were extremely lucky.

Getting to the Present

So how did things change? Well, they changed because of people like you! I hope people like me in small way. People like the doctors you have heard speaking, but mostly because of people like you were asking questions and not getting any answers. Mostly because people like me were getting a very dissatisfied as to what was happening, and I knew on a personal note that I needed to go away to learn about what was happening to you, and why. As a nurse I did not know enough, I knew general nursing, but I didn't know enough about what I needed to know. So I went away like others did, did a renal course, which gave me a basic understanding of how the body works. It didn't help me understand how you are all feeling about this, so again you need training, we need training to be able to help you, and that is what I did for myself, wherever I was I learnt things.

All the time the Kidney Patients Associations are growing, other things are happening. Within our own hospital, obviously I can only speak on a personal note here, I started off doing pre-dialysis in 1982, for a patient that was going onto CAPD, which was quite a new concept at our hospital then. Then, that was just part of the general work. You looked after that patient, you organised their home deliveries, you went out to see them beforehand, you saw that they needed a sink, shower, or whatever their needs were. Luckily I was in Wales at the time, and we could ask for things like that. I didn't learn until later on that those other places could not do that. They could not provide the sinks, showers, because the Health Authorities would not do it. So there was a lot of that sort of thing going on, and it was part and parcel of your daily ward work. So you were not a special case, again you were part of a general ward, and most people were nursed there on general wards.

Training was done in the hospital and, because the patients were poorly, could take anything from two weeks, four weeks, six weeks, two months, a long process. Not pleasant for any of you really. Then, like I say, it has started to change over the years. I was working in the community, and in our hospital we managed to get a day to do pre-dialysis, which meant patients were still being seen to on an ad hoc basis. If you were luckily enough to be there on a day when I was available, then you might get some information before you got into hospital before you started dialysis. If however you did not, and you fell on a different day, or you just came in, then that would be it. You would have your lines put in, nothing. The same thing was going on with other hospitals. Throughout the country, a lot of us were struggling to get time to notice that people like you needed a little bit more than that, and deserved a little bit more than that.

So we started to communicate a little bit more. Gradually we fought, and we did have to fight to get it recognised, that to do a pre-dialysis assessment of a patient, to talk to the patient, to inform the patient to give them everything they needed to know and this would still be only a short time before they needed any treatment. It was very difficult, because it took a lot of time up. If I came out to a patient's home I might be there two to three hours, because in the first place I would have to explain how your kidneys worked, were you going to get better? Often it was me who had to say, "Well not in that sense, you cannot cure it" So all of those things were going on. Got better, communicated, talked to the doctors, talked to the patients, talk to anybody we could talk to really. In the end we got two days, and so it has progressed. Your input here has been enormous! All of this time you have been working away from your side, with people like Austin, and many of the rest of you have been working away to get your voices heard, to say we are not happy with what we have got here.

The Present

So what is pre-dialysis about now? Well, doing it as a full time job, it's a different matter altogether, and again I have not got it right, I'm working at it, but I have not got it right. I can now see patients like yourselves, I can give them the information that they need, I can give them more than that, I can show them and talk to them about what is happening to them, so they are properly informed and also give them some understanding about what is going on. It is not, nor ever has been, enough to hand out leaflets to patients. Anybody can hand out a leaflet, and there are thousands of them about, if you do not get the understanding that goes with that information, and you cannot link one thing to another, it is not going to work for you. I try to do that. We are developing a programme so that you have an initial one to one with me, and I would hope a long time before you needed dialysis. Part of my job is also to educate, and that means picking you up as early as possible, so I can talk to about phosphates, calcium, your blood results, help you understand what is going on with you. Talk to you about taking your blood pressure tablets, because again I am sure all of you here are sensible. You unfortunately are not always in the majority. Many of the patients that come through to me still do not really understand what blood pressure is about. They do not understand the long-term effect of it, as diabetes and other things.

So that is part of what should be going on. You should be getting your information earlier. So that you can take control of what is going on properly. At the end of the day, I am there to help, the doctors there to help, I hope, and review your treatment, and do all the other things that are necessary to do in order to give you a good quality of life and health. We cannot do it on our own! It takes a good amount of input from all of you here into your own treatments, as Austin said before, "You have to take control of what is going on" and we have to fight for what we need. We need to work as a team. It is not just I at Royal Preston that does the pre-dialysis side of things. We have a whole team of people, Doctor Bailey, Barbara Morris, Janice, we involve the patients, we involve the doctors, we involve the pharmacist, the dietician, and everybody are all part of that team, and we have education afternoons, education evenings, where we ask people to come, and each of these people will give a presentation. We will try to get people on board. I do one on healthy exercise - and I am wearing a blouse now so you cannot see my bulges. Those are the sorts of things we do, because we need to conserve things, we do not want you to come on dialysis before it is necessary, both for your sake and ours as well. We have not got the facilities. You do not want dialysis before you need it. Not taking control of your medications, and the rest of it will mean you do arrive on dialysis before you need to.

We have a lot more specialist nurses now. We have got the advent of EPO, so we have got people to look after the anaemia side of things, and do it very well. Many of you today have a much better quality of life than you would have had 15 years ago. I am also a trained counsellor, it is necessary, because many of you people will know, you are in essence the strong ones, because you are here today, you are the ones that are willing to speak up and say things, but there are many people out there that cannot, for various reasons, some of them, they do not want to, but many just cannot. So we do need counselling, it needs to be a full service and every unit should have that kind of service. Psychologists, counsellors, they are important. People should be given choices. When I came into this job, and when we knew we were expanding and all of that, I was a little bit naive, because I thought to myself, right we are going to have these extra spaces now, we are going to be able to do this, home dialysis programmes expanding, everything is expanding. It is going to be much better. Like I said, I was a bit naive in that, because it does not work like that, does it? We're just as stretched now as we were before we had the new unit open.

My philosophy for pre-dialysis is to conserve health, to inform, to educate and offer support, and to ease the patient into their dialysis treatment when it is time, with gentleness, respect and dignity. I try to remember when I am doing all of this, every one of you is different, we can talk about equality when it comes to giving out information and ensuring that the patients know what their rights are, and all of that, but I also have to remember that there are people who come through my doors, they don't want to know what dialysis looks like until they actually get there. They do not want me to tell them about every detail about their operation, some of you want to know everything so you can plan ahead and you can get your mind straight if you like. Some people do not, so in amongst all the pre-dialysis, I have to remember that all of you might have chronic renal failure, but every one of you is different. I have to work to that when I am talking to people. Bearing in mind I still get people coming through my doors that when they come in, they do not know why they have to come and see me. They have no idea that they have kidney problems. Thankfully it does not happen as much now, but it does still happen.

The Future

The future, are we on the right track? Well you are the best judge of that, because if we are not doing things properly you are the ones to have to tell us. I cannot change what I do if I do not know that you are not happy with what I do. I am happy to take constructive criticism from anybody, be it from patients, doctors or anybody else. I would welcome input as to how we can improve things. We have to keep checking things out, to understand whether we are doing things properly, we have to liaise with you and other units, and look at what other people are doing to make sure we do not fall behind.

Is the programme of care equal for everyone? Well the answer to that is no. It is not an equal care programme. I do not have a lot of things for the ethnic group that I would like. Things are getting better, but we are not there yet. So we have to work at that.

Joining forces, now how can we join forces? Are we meeting your needs? If not why not? Joining forces means exactly that -working together; I have just told my boss that we have a whole untapped resource here. All of you people have a huge amount of skills between you that you can pass on to others. In all sorts of ways. I would like to see your presence at clinics, when patients are coming through the system. I would like patients to see other patients that are standing up, that are talking, that are going about their daily business, they do not see that often. I would like to see also, for those patients on dialysis that have been on dialysis many years, and that have bone problems, and the other things that come along on long-term treatments of any kind. That they had days for them, that someone organised for them, comfort days, that they could explore other things, and that they could find out what other things are available now that were not available five years ago, because sometimes when you are being treated over a long period of time, people are used to seeing you. They are used to you saying, " Ooh my neck aches today, I'm having trouble with this knee" well they are used to it! So sometimes we do not always hear you. To focus on a day like that it makes people look at it, it makes the doctors look at it, nurses look at it. Maybe something will come out of that, even for one patient that might make things a little bit better for them.

People on haemodialysis, in particular, on many units, have nothing to do while they are on dialysis. Now some of them do not want anything to do, some of them just want to go to sleep. That's the way they prefer it. I would not like to suggest at all that people should be made to do anything. However, I do think things should be offered to them. We ought to involve the community more; we ought to involve the universities more. We ought to involve other bodies more.

The way forward, well, we have to have a lot of education. We have to educate other people who do not understand, as many of you here are trying to do. I think also an area that we are missing entirely is when we are thinking ahead for the people that are coming behind us, many years hence; it would be lovely to think that there was not going to be any renal failure in many years hence, that somebody was going to grow kidneys by the dozen, and just give them out. That would be lovely, but we all know that is not going to be the case. So what about the children that are in school? How can we get across in the schools what the salt intake is doing? I have heard many people, including medical, say " If you have got good working kidneys there is no need to worry about salt". What a load of rubbish! Anybody with half a brain can work out, it is a bit like a car. If you look after it, it will last a long time, if you abuse it, it's won't. It is the same with your kidneys, yes, of course you kidneys will work away and do the job, but over time, that's going to have an effect. So should we not be liasing with schools, talking to the Government, and people about getting into schools, teaching them more. People like you going in and sitting with the children in a proper way, and talking to them, as a human being, and I do not mean to frighten them or anything. We need to talk to each other, doctors, MP's, and find out if your area has not got facilities, why has it not got them? There are a lot of good things going on, a lot of good things going on. Things are expanding and improving all the time, and I realise there are a lot of areas where we fall very short. If we work together, we are going towards it.

Thank you!

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