Rosie Winterton – 2004 Speech to National Kidney Federation Conference

Below is the text of the speech made by Rosie Winterton, the then Minister of State for Health, on 2 October 2004.

1. I would like to thank the NKF on all the work they have done on advising us on strategy regarding renal services. It is so important that we have patient input – we must take notice of what patients and staff are saying on the frontline. I am grateful to the NKF for all their hard work with the All Party Parliamentary Kidney Group and for raising awareness in educating the public and patients.

Setting the Scene

2. We launched the NHS Plan four years ago. The Plan recognised it would take time to deliver a genuinely patient-centred service. That is why from the start it was a ten-year programme of investment and reform. Among other things, it identified the need to increase dialysis capacity by an extra haemodialysis stations by 2004. The NHS has exceeded that target. The latest data from the National Survey of Renal Units carried out by the UK Renal Registry shows that the number of stations increased by almost 700 between 1998 and 2002.

3. Kidney services are entering a new era. The Renal National Service Framework (NSF) was published 10 months ago. It put forward a clear vision of a truly world class renal service to be developed over the next ten years. All this is being be supported through greater capacity, and better and faster services.

4. The NSF is changing things for kidney patients, placing them and their families at the centre. It is ensuring they are consulted and involved in important decisions about their care. It aims to:

– give all patients a personalised care plan agreed with their clinician.

– provide access to information about the different treatment options – including a pre-emptive transplant if possible.

– make sure that any related operations are carried out in good time before dialysis starts; and

– give people a real choice about which treatment best suits their personal circumstances.

5. Back in June this year we launched the NHS Improvement Plan to take us into the next stage of reform. It set out plans for this personalised care and support for people with long term conditions, including people with kidney disease. Our vision is clear, our direction is set, and it is now down to all of us, including you as patients, to make the very best of this opportunity.

6. But we cannot have that vision without additional resources and we are doing that through,

More investment – By 2007/08 we shall be investing £90 Billion pounds per year in the NHS – up from £34 Billion in 1997. That is over 150% more investment in 10 years.
more capacity – as I said earlier the national survey of renal units found dialysis capacity expanding fast, exceeding the NHS Plan aspirations.
20,000 more doctors since 1997.
77,500 more nurses since 1997,

Modernisation Pilots (focusing on Vascular Access Surgery)

7. But we know there is more to do, for example we are working to identify and remove any blockages in the system around vascular access surgery. We know this is a real concern for dialysis patients. We have established two workforce pilots – in Exeter and Birmingham – that will follow patients through each point of their treatment, looking in detail at the tasks and staffing skills required to see if the process of care can be improved , but concentrating especially on vascular access surgery to get that speeded-up.

Renal NSF Part Two (not yet published)

8. I can assure this conference that we are determined to deliver further improvements through Part Two of the Renal NSF, which will follow soon. It will concentrate particularly on prevention and early management of kidney disease where so much difference can be made if we get it right. Donal O’Donoghue has spoken about some of the key areas we will be addressing in Part Two and I won’t say any more on that. But the NSF is key to supporting improvements in service quality and making services to suit you.

9. In July this year the Government launched National Standards: Local Action – the first ever national standards for the NHS. The standards provide a common set of requirements applying across all health care organisations to ensure that health services are both safe and of an acceptable quality. They also provide a framework for continuous improvement in the overall quality of care people receive.

10. The standards are supported by the all the National Service Frameworks and guidance about best practice from the National Institute for Clinical Excellence (NICE). These will provide a clear steer to implementing the national standards in renal services. 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.

Choice

11. The NSF aims to give patients more say in the type of treatment they have. It means that NHS staff need to respect each patient’s values and preferences. Patients should be able to choose a treatment that is most appropriate for them at any particular time taking in account of their lifestyle.

Transplants

12. As part of that choice agenda, we need to ensure that those people who choose to have a transplant and where it is clinically appropriate, are able to do so.

13. But as I am sure you know only too well demand for organs currently outstrips supply. In July 2003 we launched Saving Lives, Valuing Donors – a ten year framework identifying a four-fold challenge for Government the NHS and the public to:

– reduce the long-term need for organ transplants by preventing the ill health leading to organ failure – including kidney disease
increase the number of organs available
– design services around patients and allocate organs to people most likely to benefit
– optimise the effectiveness of organ and tissue transplantation.

14. The framework set out actions for Government and UK Transplant to take to encourage people to donate organs and tissues. These were to:

– raise quality and effectiveness

– improve clinical outcomes and quality of life

– increase the supply of organs

– accredit all tissue banks

15. And today I am launching 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.

16. Last year Government provided £3.6 million via UK Transplant to support initiatives in hospitals and specific publicity campaigns to increase transplantation rates and raise the profile of organ donation and the increased number of living kidney donor programmes alone has created a 21% increase in living kidney transplants.

17. I am delighted to say that, as a result of the investment, the dedication of staff in the NHS and UK Transplant and the generosity of donors, 2003/ 04 has been a record year.

18. In the UK between 1 April 2003 and 31 March 2004, we saw the highest number of kidney-only transplants for fourteen years, with living donation now representing one in four of all kidney-only transplants:

2,867 transplants were carried out, thanks to the generosity of
1,240 donors and 860,000 people were added to the NHS Organ Donor Register.

19. Non-heartbeating donation increased by 20%, meaning that more people than ever received a transplant from these donors.

20. These are all great successes and I am very proud of them. However, with over 5,000 people currently waiting for a kidney transplant we cannot be complacent. The report launched today also outlines the challenges that we need to address. These include,

• minimising relative refusals, by developing a better understanding of the reasons why relatives do not give permission for organ donation,
• increasing the number of people on the Organ Donor Register, through for example continued publicity such as the upcoming 10th anniversary celebrations of the Organ Donor Register
• and continuing to work with the renal industries and the voluntary organisations to raise awareness about the benefits of transplantation

Human Tissue Bill

21. It is also important to continue to demonstrate that our transplant services are based on strong ethical principles, which will encourage more people to agree to donation.

22. The Human Tissue Bill currently before Parliament will provide a consistent legal framework for donation and use of organs and tissue. In particular, the Bill will streamline and update current law on organ and tissue donation, to correct current anomalies and gaps. It provides safeguards and penalties to prevent a recurrence of the distress caused by the retention of tissues and organs without proper consent. The Bill will also help improve professional confidence, so that properly authorised supplies of tissue for research, education and transplantation can be maintained.

23. Amongst other things the Bill will make clear that the consent of the individual, given while 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.

24. The Bill will also make clear that, subject to the Coroner’s agreement, steps can be taken – normally this would be cold perfusion – to preserve organ function immediately after death while the family’s view on donation is sought.

25. Taken together, these measures in the Human Tissue Bill will help to build and improve public confidence, which was undoubtedly damaged following the revelations of organ retention, so that an increasing number of people will be willing to agree to donating organs and tissues.

ALB Review

26. I wanted to say a few words about the Arms Length Body Review. A new national Blood and Transplant Authority is to be established to support the donation and safe use of human tissues. The new authority will replace the National Blood Authority and UK Transplant.

27. Both organisations have a proven track record of delivery and efficiency and welcome the opportunity to work together to pool their experience of promoting donation, collection, allocation and distribution of blood, organs and tissues on services to help save and improve patient lives.

28. Additionally Human Tissue Authority (HTA) will be merged with the Human Fertilisation and Embryology Authority, to create a new Human Fertility and Tissue Authority. This will take place following the completion of the current Human Fertilisation and Embryology Act 1990 review is complete. In the meantime the HFTA will be established, and will work on the development of procedures, protocols, and Codes of Practice

Conclusion

29. Over the next ten years we want to see renal services taken to a new level. There is a real opportunity to make a cultural change and with it, the opportunity 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 which I realise is so important to all dialysis patients. In particular we need to continue to build on the significant successes of the last year. There have been real improvements but there are still gaps we need to address. Central Government can provide resources but we need to work with organisations such as the NKF to involve patients and staff to make a real difference to create a 21st century service.