A very big thank you to the Federation for all the work that is done on advising us about strategy. Since I have been in this role for about 15 months now, what is always obvious to me is that where we have NSFs, where we see local services been delivered, and there has been service user input, patient and public, they’re so much better. You know we cannot dictate from Government level about how services should be put together, if we are not taking notice of what people are saying on the front line. And, that does not just mean staff, it means patients also.

I also wanted to say thank you to the Federation for the role that you playing in raising awareness, which for me is important as a Minister to have things like the All Party Kidney Group and so on who are lobbying and who raise awareness and that educating of not only the public, but also the important role in talking with patients about learning about their condition and managing that. So thank you for everything that you are doing, thank you for inviting me today.

I think that when we as a government launched the NHS plan four years ago, there was recognition that it was going to take a long time to deliver the really genuinely patient centred service that we wanted to see. That is why it was a 10-year programme of investment and reform. But within that, there was recognition that we needed to increase dialysis capacity and set out there was a target of over 450 extra haemodialysis stations by 2004. I'm glad to say that we have actually exceeded that target because the latest data we have got from the national survey of renal units is that the number of stations has actually gone up by almost 700 between 1998 and 2002. I do think that kidney services are entering a new era and we publish the new NSF as you will all know here? Something like 10 months ago what we tried to do in that was to put forward a very clear vision of a truly world class renal service, that we wanted to see developed and we set a time frame for that, again of over the next 10 years and we wanted to see that vision supported by greater capacity, better services and faster services. I think through the NSF we are changing things for the kidney patients and one of the key principles of the NSF is to ensure patients are consulted and involved in important decisions about their care.

We want to see that all patients are given a personalised care plan, agreed with their clinician. We want to see patients provided with access to information about the different treatment options, including a pre-emptive transplant if possible, making sure that any related operations are carried out in good time before dialysis starts. Give people a real choice about which treatment suits their personal circumstances. If we are going to set out that kind of vision, it is also true that we have to make sure that the resources are there. In June of this year we launched the NHS improvement plan, which was about the next stage of reform that we want to see of the NHS, and again that made one of the key principles personalised care and support for people, but more importantly it actually extended that out to people with long term conditions, including people with kidney disease.

So what we have tried to do through those three measures is to make sure that we have a very clear vision about where we want to go. Again as I have said, we cannot have that vision without the resources. I hope and I think there is actually now a kind of political consensus about this that more resources are going into the NHS and when we came to power in 1997 there was something like £30 billion was going into the NHS. By the time we get to 2007 that will have increased to £90 billion a year. That is 150% investment in ten years, but people will expect a return for that, patients, the staff and public will all expect for that amount of money that we are able to work to some very clear goals, and that s why it is important that not only do we set out that vision but that we also monitor it. Within those extra resources we do need to make sure that we get more dialysis units, that we increase the number of doctors and nurses working in the area. As I have said we know that there is more to do, we are trying to identify particular areas where we think that you have concerns. We want to, for example, work to identify and remove any blockages that they might be in the system around vascular access surgery. We know that is a main concern for dialysis patients. We have established two work force pilots, one in Exeter, and one in Birmingham to follow patients through each point of their treatment, to look into some detail at the tasks and staffing skills required to see if we can improve the process of care, concentrating especially on vascular access surgery.

Now, I think one of the assurances I am sure that this conference would ask from me is, that in terms of the part 2 of Renal NSF, are we going to see some real improvement? I would make a pledge that yes, we do through that want to see further improvements. That will follow soon, but we must make sure again and thank you to everybody who has contributed to making that a reality. That will again, take us on to the next stage. It is going to concentrate particularly on prevention and early management of kidney disease, where a lot of difference can be made if we get it right and I know Donol O’Donoghue has spoken about some of the key areas that we are addressing. Again let me say this is about improving quality and supporting improvements to make sure that those services give what I know you want to see from them.

In July we also launch the National Standards Local Action. Which means that we will be able to make sure that through a combination of a National Framework delivered locally we can make sure that again we are supporting all the work that has been done through the National Service Frameworks and the work that is being done through issuing guidance about best practice from the National Institute of Clinical Excellence. These will provide a very real steer to implementing the standards in renal services and it is the NSF and NICE guidance that the Healthcare Commission will use to develop criteria to assess the performance of NHS Renal Services including kidney transplant units.

As I have said the NSF aims to give patients more say in the type of treatment they have. And really, we have to make sure that NHS staff respect each patient’s values and preferences. We will never be able to achieve that personalised service unless we can do that. Patients should be able to choose a treatment that is most appropriate for them at any particular time. Not least taking into account their lifestyles, and I know again, something that I personally have been trying to improve is how we make very sure things like holiday dialysis when people want to go away on business, just moving around the country, this is something that we do need to include, and I have been looking very closely at how we can do that. Again as part of that choice agenda we need to make sure that those people who choose to have a transplant and where it is clinically appropriate are able to do so. But I am sure, you will know only too well, demand for organs currently outstrips supply. In July 2003 we launched Saving Lives, Valuing Donors, which again was a 10-year framework for identifying the challenges for government, for the NHS, and for the public. Four challenges were identified. The need to reduce the long term need for organ transplants by preventing the ill health leading to organ failure, including kidney disease. The need to increase the number of organs available. The need to design services around patients and allocate organs to people most likely to benefit, and the need to optimise the effectiveness of organ and tissue transplantation. The framework set out actions for the government and UK Transplant to take, to encourage people to donate organs and tissues, and these were to raise quality, and effectiveness, to improve clinical outcomes and quality of life, to increase the supply of organs, and the accredit all tissue banks. And today I am going to launch a report of the progress made by Government and UK Transplant in meeting the commitments in Saving Lives, Valuing Donors, and the challenges that remain.

Now last year we provided £3.6 million via UK Transplant to support initiatives in hospitals and also specific publicity campaigns to increase transplantation rates and raise the profile of organ donation. The increased number of living kidney donor programmes alone has now created a 21% increase in living kidney transplants. I am very pleased to say that as a result of the investment, the dedication of staff in the NHS, and the work of UK Transplant, but not least of course the generosity of donors, because of those things combined, last year was a record year and between April 2003 and March 2004, we saw the highest number of kidney only transplants for 14 years, with living donation now representing one in four of all kidney only transplants.

A total of 2867 transplants were carried out thanks to the generosity of 1240 donors, and also 8600 people were added to the NHS organ donor register. Non-heart beating donation increased by 20% meaning that more people than ever received a transplant from these donors. These are all great successes and I am very proud of them but with over 5000 people currently waiting for a kidney transplant we cannot be complacent. The report that I am launching today also outlines the challenges that we need to address. What we’ve done is included in those how we can minimize relative refusals; we need to develop a better understanding of the reasons why relatives do not given permission for organ donation.

We need to increase the number of people on the organ donor register, again for example, by continued publicity campaigns. We’ve got the upcoming 10th anniversary celebrations of the organ donor register. We need to use that to see how we can raise awareness. We must continue to work with renal industries and voluntary organisations to raise awareness about the benefits of transplantation. It is also important that we continue to demonstrate that our transplant services are based on strong ethical principles, which will encourage more people to agree to donation. The Human Tissue Bill, which is currently before Parliament, provides a very consistent legal framework for donation and use of organs and tissue. The Bill is going to streamline and update current law on organ and tissue donation to correct some of the current anomalies and gaps. It will provide safeguards and penalties to prevent a reoccurrence of the stress caused by the retention of tissues and organs without proper consent. The bill will also help increase professional confidence so that properly authorised supplies of tissue for research, for education and for transplantation can be maintained. Amongst other things the Bill will make clear that the consent of the individual given whilst alive to organ or tissue donation, will be paramount.

Surviving relatives will not have an automatic right of veto. But in the absence of that prior consent the bill will make clear whose consent will be needed for organ donation to proceed. The bill will also make clear that, subject to the coroner’s agreement, steps can be taken and normally this would be through cold perfusion, to preserve organ function immediately after death while the family’s view on donation is sought. I believe that taken together, these measures in the Human Tissue Bill will help to build an improved public confidence, which was undoubtedly damaged following the revelations of organ retention and by doing that we will be able to increase the number of people who are willing to agree to donating organs and tissues.

I also wanted to say a few words about the arm’s length body review. We are going to establish a new National Blood and Transplant Authority to support the donation and safe use of human tissues and that new authority will replace the National Blood Authority and UK Transplant. Now both these organisations have a proven track record of delivery and efficiency. They welcome the opportunity to work together to pool their experience of promoting donation, collection and allocation of distribution of blood, organs and tissue on services to help save and improve patient lives. Also the Human Tissue Authority will be merged with the Human Fertilisation and Embryology Authority to create a new Human and Fertility and Tissue Authority. That will take place following the completion of the current Human Fertilisation and Embryology Act, after the review of that is complete. In the mean time the FHTA will be established and will work on development on procedures, protocols and codes of practice.

So I think, over the next ten years, we want to see renal services taken to a new level altogether and I think there is an opportunity here to create a real cultural change and to make a lasting difference. We want to see a patient-centred service where patients are able to make real choices about when and where to receive their treatment. I know how important that is to all dialysis patients in particular. Now, there have been improvements, there is no doubt about that, but also we know that there are still gaps. We have to address those gaps and we have to make sure that we continue to build on the success and do that by involving patients, by involving staff in the design of those services. We want particularly to make sure that we optimise the benefits of kidney transplantation, we want to make sure that we increase those numbers on the Organ Donor Register. We at Central Government level can provide extra resources, we can set out the vision, but we can only do that if we are in partnership with organisations like yours to make sure that the services are delivered properly, that they reflect service users needs, and they also reflect what staff on the front line are telling us. I think that if we can get that right, we can make a real difference and I think that is what the public in the 21st Century expects us do, Thank You.

Questions to the Minster (The Minister said she would prefer to answer all questions together)

Question 1:

The Government want to improve the amount of people available for transplant; why does the Government vehemently oppose the opting out system?

Question 2:

I am Jean Johnson from Greater Manchester. I was really pleased to hear that that there was great increase in spaces available for haemodialysis patients and I wonder if the Minister could tell us, how many places are available for home haemodialysis patients and whether the Government is really committed to choice in giving patients the continuing choice in having haemodialysis?

Question 3:

Contrary to popular belief, you are amongst friends here, but 460 people died last year who should not have died because of lack of transplants, and even though that we agree with your vision and your plans for what are happening in renal, it is changing. What are you going to do about it? Because if it is a ten year plan by those figures at least 5,000 people are going to die.

Question 4:

Max Bacon, Cambridge Kidney Patients Association. Mine is two points. First to thank you for giving us a view from the centre, it’s the one time of the year when we have to see that and it does seem that you are on our side. Could I ask please do you see particular efforts that the NKF should be making on our behalf? Because we are all part of the Federation, we rely on the NKF and they seem to be doing quite well, but seen from your viewpoint would you like more contribution of the patients view? Thank you.

Response from the Minister

First of all the issue of presumed consent, which obviously ties in with the point about the number people who have died because of the lack of transplants. We thought very very carefully about this, there is some very practical reasons why it was not possible to go down that route, but also behind that we did through the Human Tissue Bill have to address the issue of what had happened previously as a result of no consent when it came to organ retention. A situation that I know everybody in this room will be all too aware of. What happened following that was that there was a lack of confidence in the system; there was a huge outcry, as people will know after Bristol and Alder Hey. The medical profession as well, I think, felt very nervous about how they were supposed to react to those situations. So what we did have to do is make sure that we were designing a system that people had confidence in, and would encourage people to come forward.

So then I will come to the practical reasons why in a sense presumed consent would be extremely difficult. The fact is that in the countries where presumed consent is in existence at the moment, and Spain is one in particular that we took advice from, because transplantation there is a world leader. What their view is that any system of successful increases in the number of transplants that are made is actually dependant upon the if you like the surroundings, the kind of medical approach that is taken to it, or the support that is given to relatives for example by clinicians. Nowadays the reality is even in countries where there is supposedly presumed consent, relatives are always asked because of the need to find out for example about recent social history, because of new diseases that are around. So relatives are effectively always asked for their consent anyway. Where there were real problems and where for example in France, there was an issue about where there was presumed consent, they actually had to change it back again, there was a situation where corneas were taken from children and there was an outcry and they had to change the system back. So there are some very practical reasons why presumed consent as well as the background that there was in terms of the outcry over Bristol and Alder Hey, and what we have tried to do in the Human Tissue Bill is to strike the right balance between the two. We need to encourage people to come forward, we need to make sure that we have the proper structures in place for people to make those decisions, for relatives to make those decisions and for staff to feel empowered. We ask a lot of our NHS Staff and again this comes down to practicality. In any system of presumed consent it does rely on the staff feeling confident about it. There are not going to be fights around the bedside sort of thing, where people say we’re going to this whether you like it or not. These are very real human situations. It is incredibly difficult to design a framework which is perfect, there will be those who say that the framework is not perfect, but what we have tried to do is strike that balance between the two. I believe that if we can get that right and at the same time undertake the work that I have set out today, and then we can make those increases that are so vital. I know and am very aware of that and I can assure you that we will continue to work at that.

In terms of the patient’s views and home haemodialysis, yes I do agree that there is more that we need to do about that. Because that is very much about choice isn’t it? That is, if you are going to say that is what people want, and then we have to be able to reflect that. There will always be decisions about how people want to use their resources, now I will just tie that into the other point about what patients can do. I think it is very important in the Shifting the Balance of Power initiative that is taking place under the NHS, where we have seen resources devolve to local level, it is important that patients, the public, organisations do get involved at that local level. We know that we have a good relationship, but remember what we say is we’re making the extra resources available, but we are also asking people at local level to reflect what are the needs within their local communities, and therefore the answer to your question is, yes, carry on the good work that is being done, but also make sure that the points are being made when priorities are being decided at local level also.

From left: Ray Mackey (Co-Vice Chairman), Rosie Winterton (Minister for Health), Gary Lloyd (Co-Chairman) and Michael Hill (Co-Chairman)

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