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The largest kidney patient charity in the UK. Run by kidney patients, for kidney patients.

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Partners in Projects

As a founder member of Transplant 2013, the National Kidney Federation (NKF) commends the following report recently published by Transplant 2013 as representing a fair and honest assessment of the current state of Transplantation in the UK. The NKF is also pleased to have been the instigator body that held a Transplant Summit within the House of Commons, and subsequently to have published a Transplant Manifesto in conjunction with the All Party Parliamentary Kidney Group in 2006. These actions directly resulted in the Government setting up the Organ Donation Task Force and the report in 2008 “Organs for Transplants” widely referred to in the following Transplant 2013 report:-

Transplant 2013 logo

Organ Donation and Transplantation in the NHS

About Us

Transplant 2013 is a coalition of patient groups, clinical organisations, and industry representing the combined voice of the organ donation and transplantation community.

Our mission statement is:

To promote leadership of organ donation and transplantation in Parliament and other relevant institutions and facilitate communication and consensus within the transplant community in order to support the implementation of the Organ Donation Taskforce’s recommendations, ensure that the target to increase organ donation after death by 50% in 2013 is met, and significantly increase the number of organ transplants.

The members of Transplant 2013 are Alexion, Astellas, the British Liver Trust, the British Society for Immunology, the British Transplantation Society, the Children’s Heart Federation, the Children’s Liver Disease Foundation, the Cystic Fibrosis Trust, the Donor Family Network, Genzyme, the International Transplant Nurses Society, the Lewis Prior Foundation, Live Life Then Give Life, the National Kidney Federation, Novartis, the Renal Association, and the South Asian Health Foundation.

Key Facts

  • Organ transplantation may be life saving (e.g. heart, liver and lung transplantation) or life prolonging or changing (e.g. kidney and pancreas transplantation).
  • There are currently 7567 (down from the 8000 last year) people waiting for an organ transplant in the UK, or whom 6600 are waiting for a kidney transplant. Sadly 1000 will die or become unsuitable for a transplant each year, an average of 3 people a day.i
  • In 2010/11 there were 1010 (up from 959 in the previous year) deceased organ donors and 1041 (slightly down from 1058 in the previous year) living organ donors, which resulted in 3740 (up from 3698) transplants in the previous year (2699 with organs from deceased donors and 1041 with organs from living donors).ii
  • The results of transplantation are improving. After one year 94% of live donor kidney transplants, 88% of deceased donor kidney transplants, 86% of liver transplants, 84% of heart transplants and 77% of lung transplants are still working well.iii
  • Transplantation currently saves the NHS £390 million per year and this is expected to increase by an additional £252 million by 2013. Kidney transplantation is the most cost effective as dialysis costs £290K over 10 years whilst a transplant costs £77K. There are few alternatives for patients with liver, heart, or lung organ failure who will die without a transplant. These savings do not take into account the associated savings arising from the hugely improved quality of life of patients.iv
  • 29% of the population is currently on the NHS Organ Donor Register (ODR).v If a patient on the ODR dies, the family will refuse consent for organ donation in less than 5% of cases.vi However, if a patient dies in an appropriate way and is not on the ODR, the family will refuse consent in about 40% of cases.vii

Government Policy

In 2006 the UK Government established the Organ Donation Taskforce with a brief to identify the obstacles to organ donation and suggest solutions that would deliver the necessary increase in transplants. The Taskforce’s terms of reference were:

  • To identify barriers to organ donation and transplantation and recommend solutions within existing operational and legal framework.
  • To identify barriers to any part of the transplant process and recommend ways to overcome them to support and improve transplant rates.

Its report, Organs for Transplants (2008), identified barriers to organ donation in donor identification and referral, donor coordination, and organ retrieval arrangements.

The report made 14 recommendations to overcome these barriers that it estimated would lead to a 50% increase in deceased organ donation by 2013. The overarching theme was to make organ donation usual, not unusual.viii

Progress to Date

Most of the Taskforce’s recommendations have now been implemented. These include:

  • The establishment of NHS Blood and Transplant as the lead organ donation organisation.
  • The establishment of the UK Donation Ethics Committee to resolve legal and ethical uncertainty.
  • The establishment of donation committees and clinical leads for organ donation in NHS trusts to help make organ donation a usual part of NHS practice.
  • Expanding the number of specialist nurses in organ donation and establishing dedicated organ retrieval teams.
  • Improved training and education for clinicians.
  • Promoting and recognising the gift of organ donation.ix

In the first 3 years of the 5 year plan there has been a 26% increase in the number of deceased donors, although there is still much to achieve. Because of the types of donor available this has mainly benefitted those awaiting a kidney transplant.x

Alongside the increase in deceased donation, there has also been a marked increase in the number of live donor transplants (predominantly kidney) to over 1000 per year. More than half the total number of organ donors are now living donors.xi

Ongoing Challenges

Despite this progress to date there are several key challenges to reduce the gap between the demand for and supply of organs, including:

  • Developing strong national leadership and understanding of organ donation and transplantation issues amongst politicians and policy-makers, particularly during the structural reform of the NHS.
  • Maintaining the momentum of the implementation of the Organ Donation Taskforce’s recommendations until 2013 to ensure that organ donation and transplantation becomes usual in the NHS.
  • Ensuring that organ donation and transplantation services are maintained during the restructuring of the NHS in England and are not adversely affected by the consequences of the spending review.
  • Leading public opinion and promoting organ donation and transplantation amongst the general public to encourage families to discuss their choices about organ donation in life.
  • Encouraging and supporting ongoing innovation and research to maximize the number of organs suitable for transplantation and improve their long term outcomes.
  • Improving the low rate of organ donation and transplantation within Black and Minority Ethnic communities.

Key Issues

  • Consent Rates – Families of potential donors who are not on the NHS Organ Donor Register refuse to consent to organ donation in 40% of cases.xii In contrast the refusal rate in Spain is just 20%.xiii
  • Black and Minority Ethic (BME) Groups – People of Black and Minority Ethnic origin are 3-4 times more likely to need a transplant than white people but are significantly underrepresented on the organ donor register, despite a number of initiatives taken by the Government. 75% of families of potential donors from BME communities refuse consent to organ donation.xiv There has been little progress on this issue to date.
  • Higher-Risk Organs – In the last decade donors have become older, and a third of donors are now from cardiac death rather than brain death.These organs are higher risk and have less good outcomes than those from an ideal donor, but outcomes are still much better than the alternatives – death for those needing a liver, heart, lung transplant, or dialysis for those needing a kidney transplant. Where possible organs are age-matched and risks are explained to those waiting for a transplant in accordance with guidelines published by the British Transplantation Society and NHS Blood and Transplant on consent for solid organ donation.xv There is a need to explain this carefully to patients so that they can make informed choices.
  • The culture and practice of the NHS needs to change so that organ donation becomes a usual rather than an unusual event. All patients dying in hospital in suitable circumstances, which includes medical condition and mode of death, on an intensive care unit or emergency department should be considered as a potential organ donor. This is currently not happening consistently across the country.

Consent for Organ Donation

The UK has an opt-in system for organ donation. Other countries have an opt-out system where individuals who do not wish to be an organ donor after death register that wish centrally.

There are strong arguments and feelings for and against moving to an opt-out system in the UK. However, the Organ Donation Taskforce thoroughly considered the potential impact of an opt-out system and concluded that there was no compelling evidence that introducing this system would deliver significant increases in the number of donated organs, that it had the potential to undermine trust in the NHS, and that it would distract attention away from essential improvements to systems and infrastructure and from the urgent need to improve public awareness and understanding of organ donation.xvi

As such, the Taskforce recommended that opt-out systems should be reviewed in 2013 in the context of the success achieved in increasing donor numbers through implementation of the 14 recommendations in Organs for Transplants. For this reason Transplant 2013 will campaign in support of these recommendations, which aim to overcome the barriers to organ donation and transplantation identified above, rather than on the system of consent for organ donation. Transplant 2013 will also keep a watching brief on the development in Wales.

Notes

  1. NHS Blood and Transplant (2010). Transplant activity in the UK: Activity report 2009/10. http://www.uktransplant.org.uk/ukt/statistics/transplant_activity_report/transplant_activity_report.jsp. Accessed 19/11/10
  2. NHS Blood and Transplant (2010).
  3. http://www.organdonation.nhs.uk/ukt/about_transplants/success_rates/success_rates.jsp. Accessed 19/11/10.
  4. West Midlands SHA
  5. http://www.organdonation.nhs.uk/ukt/. Accessed 19/11/10.
  6. NHS Blood and Transplant personal communication to Keith Rigg.
  7. NHS Blood and Transplant (2010).
  8. Department of Health (2008a). Organs for transplants: A report from the Organ Donation Taskforce. Accessed 19/11/10.
  9. Department of Health (2009). Working together to save lives: The Organ Donation Taskforce Implementation Programme’s annual report 2008/09.  Accessed 19/11/10.
  10. NHS Blood and Transplant (2010).
  11. NHS Blood and Transplant (2010).
  12. NHS Blood and Transplant (2010).
  13. Department of Health (2008a).
  14. Department of Health (2008a).
  15. British Transplantation Society and NHS Blood and Transplant (2011). http://www.uktransplant.org.uk/ukt/pdfs/guidelines_for_consent.pdf
  16. Department of Health (2008b). The potential impact of an opt-out system for organ donation in the UK: An independent report for the Organ Donation Taskforce.  Accessed 19/11/10.

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