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Your
NKF - does it do what you want?
- (full conference transcript)
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Tim Statham OBE
Chief Executive of the NKF
I’m going to try this afternoon to tell you a little bit about the rather enormous amount of work that the NKF is currently doing. Now many of you will know about some of it, but I bet there isn’t a person in the room who knows all of it. So there is something here for all of you.
Charity run by Patients for Patients
The first and most important thing is that there are an awful lot of kidney charities. But the National Kidney Federation is the only UK national charity that is actually run by the patients for the patients. Now that is not a glib handaway, it’s absolutely true. You elect your council, the council elects your executive, the council elects the officers, and you, the patients, run the NKF. Now there are six members of staff but the members of staff all do what they’re told by the executive and the officers. So this is very much a charity where the patients are fully in control, and in an extremely democratic way.
Now the origin of the NKF started with you, the kidney patient associations. You were there a long time before the NKF was born. Because, as you will know, where there is a renal unit, there is usually a kidney patient association. But 24 years ago things were in a pretty dire state, and you realised that you needed a national voice to get the renal voice heard in the world at large, and it was for that reason that you founded the National Kidney Federation. So it’s your charity, and you own it in exactly the same way as you own the charity of your own KPA. So if you want to close the NKF down, it is well within your powers to do so at a council meeting. So remember, the NKF is only here providing it pleases you.
Two Roles - Campaigning and Patient Support services
Now, unlike most of the other kidney charities, we don’t do the sort of things that you get up to. We don’t raise money for hospitals, we don’t raise money for kidney machines, we don’t raise money for individual patients. We only have two very specific roles. The first is a campaigning role. We have the duty to campaign for improvements to renal services in the United Kingdom. The provision and the treatment are what we are fighting for.
But we have a second role. That is to provide patient support services that can only be done at a national level. Now I just want to tell you a little about those two headings, those two roles.
Firstly, the campaigning. The very first thing to tell you about is the All Party Parliamentary Kidney Group, of MPs and Lords. Now it was clear that the renal case was not being heard by politicians. We needed to get the argument into the House of Commons and into the House of Lords. And we needed a group of MPs to actually take our case forward. Now to get an all-party group established, you have to put down an early day motion and you have to get enough MPs to sign it to set up the group. If you don’t get enough signatures, you don’t get the group. Now this is where the structure of the NKF was so useful, because we sent the message out to the kidney patient associations (this is about four years ago), go and see your own MPs, get them to sign the early day motion. And you did, and you did it with remarkable success, because you got 108 of those MPs to sign the early day motion. And from that day on you have had an All Party Kidney Group in the House of Commons.
You may not know how much difference that has made. But it has made the most enormous amount of difference, because you are a small group of patients. You are only 33,000 at the moment. Admittedly, you will have doubled in number in ten years, but at the moment you are 33,000, and that in the scheme of things is not a large number of people. And so in the House of Commons nobody listened to renal, but they do now, because all of the time the NKF and others are feeding in questions about kidney disease into the All Party Kidney Group. And they are asking those questions of ministers, tabling questions, written questions, all of the time. I’m sure you don’t go home and read Hansard, but if you did you would actually find that every week that goes past, a whole raft of renal questions are asked of ministers, and ministers have to reply. The whole profile of renal disease has got very much greater.
We like to think that we have a good dialogue with the Department of Health, and I think we do. There is largely speaking quite an open door to the NKF and that’s because they know that we’re patients. They know that we’re not exercising a commercial axe to grind. They know it is simply the patients’ case. So, when we have a problem that needs talking to the ministers, so far the ministers have been prepared to listen. And indeed you will know that sometimes they come to your conference here.
Now also we go to party political conferences. And the reason for that is because governments change and we don’t want to start on the ground floor if the government changes. We need to have spokesmen in each of the parties that we know and we talk to, so that if in the future there is a change of government, we will be some way along the line in establishing a reasonable relationship.
Now on the subject of transplantation, you will know as well as I know that things have been going in the wrong direction for quite a long period of time. Certainly in the first six months of this year, the number of transplants has fallen by 13 per cent instead of having risen. There is an organisation that the BMA set up called the Transplant Partnership, and the NKF realised that it needed to be part of the Transplant Partnership. And so we joined. We are one of 18 groups who meet regularly to decide how we can campaign to improve things in transplantation. One of the successes was getting the Government to realise that the old UKTSSA had to go and in its place had to come UK Transplant. You’ve heard from UK Transplant today. They have a large and expensive programme to try and improve things. Now whether it’s the right programme, whether it’s going to succeed, we don’t know. But what we do know is that the Transplant Partnership is monitoring it every day and every week of the year. If it is going to go in the wrong direction, we’re going to raise an awful lot of noise straight away to stop it slipping any further. We want an improvement in transplantation rapidly. One of the things that is very promising is that it is the organisation of transplantation that is wrong in this country, and some of the Acts of Parliament are not helpful to transplantation. They provide reasons all the time why there shouldn’t be a transplant, instead of reasons why there should be. Now we’ve been arguing for a new Act of Parliament and it looks as though there is going to be one. The Government has got as far as publishing a discussion document called 'Human Bodies, Human Choices', and in it are a number of proposals which are now currently under active consideration. But it is in the expectation that there will be a White Paper which will propose changes to the Transplant Act. All the changes will be aimed at increasing the number of transplants that take place. And we have a huge mountain to climb on this issue.
Now, that document there, some of you may know, it’s called 'Towards the National Service Framework'. I think it is one of the NKF’s greatest successes. You will probably know that the Government set its face against having a renal National Service Framework. They said that 33,000 patients was not enough for a National Service Framework. And yet it was because renal was suffering all the problems of a post-code service – it depended on where you lived whether you got any treatment, and it depended where you lived what the level of treatment was – and if there was ever a case that you needed a national framework to put these things right, it was renal. So when the Government said sorry, you’re not having one, I think the right word was that the NKF was totally gutted – completely and absolutely gutted. So rather than accept that situation, the NKF together with the Renal Association formed a new group called the Kidney Alliance, who set about writing a National Service Framework for dialysis themselves. Now they knew it wasn’t an official one, and they knew it would never be accepted by the Government as an official one. But after two years it was a damned good document. And they launched it by launching in the House of Commons to the ministers. It was a case of “Here you are, in your face, minister, we’ve had to do it as a small charity, why aren’t you doing it?” And that was enough, because five weeks later the Government folded on the issue and announced a National Service Framework. And I think for any lobbying group to achieve a change in Government policy is a huge success. For a group of patients to achieve it is a remarkable success.
Now the Government having announced that there was going to be a National Service Framework meant that the NKF had to change from being campaigning for one to being an organisation working with the Government to make sure that their National Service Framework was as good as our own document. And that’s what the NKF is currently doing. We’ve already provided more than 200 patients to give evidence to the NSF. And we have four of our patients serving on their Expert Reference Group. So we are deeply in there working, trying to ensure that it will be a document worth having when it is completed. And if we find they are going in the wrong direction, we are going to raise an awful lot of noise straight away to stop it slipping any further.
Now if I can just turn to patient support services, moving away from campaigning now, the first thing that we set up about four years ago was the Helpline and Jane Oldfield is our Helpline manager. She takes about 110 calls a week from you. So that I think shows just how successful it is. After all, when it was set up we had no idea whether this service was needed or not. We’ve now found that it is needed, and needed quite badly, and indeed there is every case to say that the Helpline needs expanding. It takes calls of every description – about people’s general medical problems, to questions about insurance, and it doesn’t matter where you live in the country it’s a low cost call, and you can get that sort of help.
Also the website, like the NKF, was created by patients, and it’s maintained and run by patients. If you are a cross section of the population, probably half of you will not use computers, but if you haven’t seen it you should know that the website is more than 500 pages long, it is a huge, huge website. And it has every piece of information about kidney disease that you could ever possibly wish to see. And it’s been seen by more than 100,000 patients. That is a staggering figure. It’s one of the reasons why all of the renal industry companies want to know the NKF, because they know that we are communicating all of the time with the patients. People who have been on it often click on those buttons on the right and the centre, but what they sometimes don’t know is that the very largest areas are the panels on the left, where it says medical information, campaigns zone etc. Those are vast areas of information, so if you need medical information, go there. If you need to know about campaigning, go to the one down. If you want to talk with other patients, go to Talkline. Now that isn’t like a telephone conversation, it isn’t where you can speak in real time, but you go into the area that suits you. If you are a haemodialysis patient, you go into that area, if you are a peritoneal patient you go there, if you’re a transplant patient there, and so on and so forth. And you’ll leave a message. And then you go back to it a day later, and see who’s replied to you. Now at any one time if you look at this site you will see more than 100 conversations, messages taking place. And what we’ve found and hadn’t expected is that they’re taking place between patients, doctors, nurses, people from all around the world. It is the most enormous exchange of information. There is a living donor information zone for people who are considering that subject. At the bottom there is the area where you will find details of your local KPAs. So that’s the website.
And of course there is Kidney Life. I think all of us are grateful to Katherine for the most remarkable magazine that comes out every three months. I think all patients wait for that and it’s easy to read, it’s informative, it’s truly wonderful.
Now leaflets. If you had asked the NKF, what leaflets do you have five years ago, we would probably said “Six, and the trouble is they’re out of date, and we have nowhere to store them and it’s a big problem.” Well, we did change this, and what we did was, because the medical information on the website is so good and so completely up to date, we decided that that ought to be the leaflets. So if you were to go to the Worksop headquarters now, you would see a million blank sheets of paper with simply the coloured headings on. They’re templates. What happens, when the Helpline gets a call from a patient who perhaps wants something unusual – “I want to know about a kidney biopsy” – in Worksop, they’ll simply go on to our website, look up kidney biopsy, download it into one of these blank leaflets, fold it up, put it into the post and out to you it goes. One immediate up-to-date information on a strange subject posted to you that same day. And it’s the same with multiple leaflets. If a hospital rings up and says they want 3,000 on anaemia, we do exactly the same thing. We download it that day, so it’s up to date, we print 3,000 and out they go to that renal unit.
Now because it’s so instant, and because it means that we are able to produce thousands of different types of leaflets –holiday companies, insurance, anything you care to think of – we’ve rapidly become the United Kingdom’s largest supplier of renal leaflets. We are sending out literally hundreds of thousands of these documents. And they are serving a very useful purpose.
Now Robert Dunn is our advocacy officer. He’s our man on a white horse that charges out to wherever there’s trouble to shoot down the foe. He works on behalf of individual patients who are running into difficulties, and on behalf of Kidney Patient Associations that are running into difficulties. These cases usually come into the Helpline, the Helpline realises it’s a case for Bob, they tell Bob, Bob contacts the individual or the KPA, and discusses the issue. Sometimes he is able to help over the phone, but sometimes it’s necessary for Bob to visit. So that’s a very essential part of Bob’s role. But Bob also has a more central role in representing the NKF’s case on a whole range of areas, both in commissioning, on the National Service Framework, with the Department of Health, and with the Government. So, Bob is a very important chap, and we need a lot more Bobs – mini-Bobs, whatever you care to call them.
And of course there’s the annual conference, where we are now. That’s quite a big undertaking for the Worksop staff. It tends to take up rather too much of the year than I would like, but I do think when we get here and see how successful it all is, I begin to forgive all the time it seems to be taking the staff.
The Future
Plans for the future. I don’t know what Sara Tyler had got in mind, but she says she’s very willing to meet anybody outside in the foyer at 7.30. But she doesn’t want a queue of elderly men. Sara would like to meet young folk who are interested in the subject. Young people are not in large numbers in the renal world. Renal disease tends to be middle-aged to elderly. But that doesn’t mean there are not young people with renal disease. And most of them seem to be in a rather isolated position. They don’t have people to talk to. And so Sara wrote to us about this issue, she wrote in 'Kidney Life', to say, “I’ve just gone into renal failure, I’ve got nobody to talk to, there doesn’t seem to be a movement, can I set one up?”
The NKF executive met with her and are doing everything they can to help Sara set this up. But what she’s setting up is a group that is in two halves. There is the from birth to 18 years old group and there’s the 18 to 40 years group. Now we’re not simply trying to flatter those in their late 30’s by calling them young persons, but in fact their problems are different. You see, in the younger group it may be problems to do with schooling being missed because of dialysis, it could be all sorts of things like that, but in the 18-40 years there are all sorts of issues to do with sexual relations, all those type of things which are currently going uncatered for, unaddressed. And so the idea is to set up two groups which will be national groups, which are going to try and put these people in touch with each other, and who knows where it might lead? We think Sara is on to a winner, and the NKF executive is doing everything it can to support Sara. So that’s a good plan for the future.
We also think it’s a nonsense that kidney charities don’t talk to each other, don’t work with each other. We are doing everything we can in the NKF to make contact with all the other kidney charities and try and stop this nonsense and get us all pulling in the same direction. That’s something we’ve set as a task.
The ethnic challenge – a serious problem. If you look at the way the population is divided in this country, there are pockets of Afro-Caribbean and Asian groups. Wherever you see that, you will see a large incidence of renal disease. The reason for that is because those communities have a problem with diabetes, and diabetes leads on to end-stage renal failure. So whenever you have Asian groups and Afro-Caribbean groups you have a big renal problem. It’s worse than that, because whereas we want to involve these ethnic groups in our work, we are finding that very difficult. We haven’t found that the ethnic groups want to come and join us. And when we’ve gone out to try and communicate with the ethnic groups and say, come and join us, the only time we’ve succeeded is when the person who has joined up with the KPA is, if you like, a Westernised version of the ethnic group. What it isn’t is a true representation of the culture of that ethnic group. We have got to find a solution to this, we’ve got to find a way of talking with the ethnic groups in our community and relating with them in a positive way. For very real reasons. One reason is that the ethnic groups are not very good at being the suppliers of donor transplants, and if you are from one of those communities, the likelihood is that you will only get a transplant if you can get a match from your own population. Therefore there is a shortage, a huge shortage, in the ethnic communities. We have got to do something about this. We have got to find a way of breaking down the barriers and working with the ethnic groups. So that is a role.
We also know that some of the KPAs are extremely successful. But some of them are struggling. They’re being run by just a handful of patients who cannot sign up new members. The NKF feels it must try to find a way forward to help those KPAs. I don’t know yet what the answer is going to be. I know that it is dear to your chairman’s heart, to Gordon Nicholas’s heart. He wants to get a solution and I know he intends to put plans before the executive to try and find real ways of getting professional help in to assist the KPAs.
There is also the monitoring of the renal NSF, because it isn’t any good just having the document. We’ve got to ensure that once the document is published, the changes that are spelt out in it actually happen. And the people who will know whether they are happening are you, the patients. So we need between now and publication date to, if you like, embark upon a process of education of the KPAs to know what you should be looking for, what the changes are that you should be spotting, and alerting you to campaign if you’re not getting them. This National Service Framework must not be a damp squib.
CEAPIR is the European version of the National Kidney Federation. And the NKF is a member of CEAPIR. Each year you send two of your executive to whichever country is hosting the meeting in order to communicate with the other countries and to learn from the other countries. This is an extremely useful exchange.
The NKF cannot ignore those who have not yet become our members. We know that there are at least 100,000 people out there with some form of kidney disease. Many of them will become end-stage renal failure patients, but not all of them have to become end-stage renal failure if they receive some guidance and some education in things that can be done at an early stage. The NKF hasn’t yet embarked upon this programme, but it knows that it must, because if 100,000 patients overwhelm renal services then all is lost. We have to find a way of finding these patients, whether they be diabetics, whether they be hypertensive, whatever group of people they are coming from, we have to find them and we have to stop them becoming our patients.
And of course next year the NKF celebrates its 25th anniversary – and I can’t think of a better place to end.
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