Organ Donation

Access to kidney transplantation in the UK

21 July 2010

In response to an article published on bmj.com on 21 July 2010 regarding variations between centres in terms of patients’ access to kidney transplantation, James Neuberger, Associate Medical Director of Organ Donation and Transplantation at NHSBT, said:

“NHS Blood and Transplant (NHSBT) has long been responsible for analysing data relating to transplants and their outcomes in order to inform future clinical practice and ensure the best possible care for patients.

“We therefore welcome this study and encourage renal centres to take note of its findings so as to help bring about further improvement in care, treatment and equity.

“NHSBT is responsible for the criteria used by transplant centres for selecting patients to join the National Transplant List and also for the allocation of donated organs. These procedures are drawn up by health care professionals and in discussion with patients, through our organ-specific advisory groups.

“NHSBT is committed to ensuring there is equity of access to transplantation of all organs, regardless of various factors such as the patient’s age, gender or ethnicity, and our policies are continuously reviewed to ensure they are appropriate and up-to-date.

“There is a serious shortage of donated kidneys and other organs for transplantation which leads to around 1,000 deaths every year in the UK of people who are waiting or who become too ill and have to be removed from the list.

“We have however seen a 40% increase in the number of kidney transplants taking place in the UK in the past five years – up from 1,855 in 2005 to 2,599 in 2009.

“But with almost 7,000 people waiting for a kidney transplant in the UK, we need to ensure that all the relevant systems are as efficient as possible so that more people can benefit from organ donation and transplantation.

“To help increase the availability of donated organs, we also need the general public to discuss their wishes regarding organ donation with their close relatives and to join the NHS Organ Donor Register.”

To join the NHS Organ Donor Register, call 0300 123 23 23, visit www.organdonation.nhs.uk or text SAVE to 84118 - and let your relatives know your wishes.

For further enquires please contact the NHSBT press office on 0117 969 2444 or pressoffice@nhsbt.nhs.uk or call the press pager on 07659 133583 for out of hours enquiries.

Recording of incorrect data on the NHS Organ Donor Register

29 June 2010

We have now written to 300,000 people on the Organ Donor Register to confirm their preferences for organ donation, following identification of a technical error in recording information on the Register. This means that all those whose preferences could not be confirmed from the information already held have received a letter asking them to contact us. However, if anyone wishes to check their details please contact us on 0300 123 99 99 or email odr-records@nhsbt.nhs.uk.

Where we have not been contacted by the named registrant and any records are believed to still contain potentially incorrect information, we can assure ODR members that these records will not be used in discussions with families about organ donation. Only records that were believed to have been affected and then amended in accordance with the registrant’s wishes will be used in any future family discussions.

We have contacted the small number of families whose relative became a donor where their preferences may not have been correctly recorded. In each case the family gave permission for the donation to take place, but it may not have been in line with the individual's preferences. We sincerely apologise for any distress this may have caused.

Three people die every day due to lack of an organ and we thank everyone who makes the very important decision to join the Organ Donor Register. If you are already on the Register please make sure that your family is aware of your wish to donate.

Recording of incorrect data on the NHS Organ Donor Register

23 April 2010

We are currently writing to 300,000 people on the organ donor register to confirm their preferences following identification of a technical error in recording information on the NHS Organ Donor Register. If you have not heard from us in the next month then you can be confident that your record is accurate. However, if you wish to check your details please contact us on 0300 123 99 99 or email odr-records@nhsbt.nhs.uk.

We assure everyone on the Organ Donor Register that the affected records will not be used in discussions with their family about organ donation. They will only be used once they have been corrected in accordance with the donor's wishes.

We have contacted the 25 families whose relative became a donor where their preferences may not have been correctly recorded. In each case the family gave permission for the donation to take place, but it may not have been in line with the individual's preferences. We sincerely apologise for any distress this may have caused.

Most of the 17 million people on the Register do not need to take any action. Three people die a day due to lack of an organ and we thank everyone who makes this very generous step to give the gift of life. If you are already on the Organ Donor Register please make sure that your family is aware of your wish to donate.

Recording of incorrect data on the NHS Organ Donor Register

11 April 2010

We have identified a technical error in recording information on the NHS Organ Donor Register. This only affects those who have registered via the driving licence application form.

We assure everyone currently on the organ donor register that the affected records will not be used in discussions with their family about organ donation. They will only be used once they have been corrected in accordance with the donors' wishes. We will shortly be writing to all those on the register who may be affected to confirm their preferences. Anyone else on the register who is not contacted can be confident that their record is accurate.

There are a small number of cases, 21 over the past six years, where the person has died and their preferences may not have been correctly recorded. In each case the family gave permission for the donation to take place, but it may not have been in line with the individual's preferences. We will be contacting the affected families as a matter of urgency. There could be a small number of additional cases. We are still checking our records to ensure that other donors or families have not been similarly affected.

The vast majority of people on the ODR do not need to take any action. If you are registered on the ODR and haven't been contacted by us then there's nothing you need to do, we can assure you that the problem is being fixed.

We sincerely apologise for any distress this may have caused. We can reassure everyone that no organs have been donated without the support of the deceased's nearest relatives and that no one has been registered as a donor against their wishes.

Requested allocation of a deceased donor organ

29 March 2010

NHS Blood and Transplant welcomes the introduction of guidance designed to allow for flexibility in the allocation of donated organs in exceptional circumstances.

The guidelines, which have been agreed by all UK Health Administrations, allow for a donated organ to be allocated preferentially to someone waiting for an organ transplant who is in a close relationship to the deceased.

Sally Johnson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, the special health authority responsible for the allocation of organs across the UK, said: “This guidance supports the well-established donation process in which respecting the wishes of donors, in consultation with their relatives, is an important part.

“Thousands of people benefit every year from an organ donated unconditionally by a complete stranger which is allocated based on clinical need, ensuring the best possible outcome for the transplant.

“This guidance will enable us to consider, as we always do, what the donor wanted but also to take into account the health and wellbeing of a sick patient who is known to them.

“We do not expect these occasions to arise very often and most organ transplants carried out in the UK will continue to be based on unconditional donation.

"With around 10,000 people in need of an organ transplant and an average of three people dying every day because of the shortage, there remains an urgent need for people to consider donation in general, join the NHS Organ Donor Register and to discuss their donation wishes with their relatives so that these can be confirmed when the time comes."

Super-urgent liver and heart patients will continue to take priority in the organ allocation process due to the urgency of their need and the likelihood of their death without a transplant.

The process for joining the NHS Organ Donor Register will be unchanged as a result of the guidance – any consideration of requested or preferential donation will only be given at the time of the donor’s death.

NHSBT statement on mandated choice for organ donation

17 March 2010

NHS Blood and Transplant (NHSBT) welcomes the debate about mandated choice for organ donation as a way of encouraging discussion about this important subject.

However, it is neither for nor against any changes to the system of consent for organ donation, any of which would require a change of legislation.

Instead, with three people dying every day in the UK in need of an organ transplant, NHSBT’s focus is on encouraging even more people to join the NHS Organ Donor Register (ODR).

The Human Tissue Acts, introduced in 2006, confirm the importance of consent for organ donation and make it clear that the wishes of the deceased should be of the utmost importance.

More than 17 million people have already joined the ODR – that’s 28% of the UK population – but even more are needed.

Anyone signing up is urged to discuss their wishes with family and friends to ensure they can confirm their wishes when the time comes.

To sign up to the NHS Organ Donor Register you can do so now by calling 0300 123 23 23 or logging on to www.organdonation.nhs.uk

Eligibility of non-UK residents to receive donated organs

9 December 2009

NHS Blood and Transplant (NHSBT) has a statutory responsibility to ensure the integrity of organ donation in the United Kingdom – specifically, that organs donated for transplant are matched and allocated in a fair way, based on the clinical need of the patient and in accordance with the law.

Organs donated from deceased donors in the UK are given freely and without condition. It is illegal to sell organs for transplantation in the UK.

Safety of organs for transplant

25 November 2009

Transplants are vital operations and their success depend entirely on the generosity of donors and their families who make this lifesaving gift.

Donated organs are a precious resource and save thousands of lives through organ transplants every year. In the UK, donated organs are given freely and without condition, and are allocated to waiting patients strictly according to need and best match. Organ transplantation has an excellent safety record and can transform a patient's life.

Detailed screening is carried out on every donor. This takes account of their cause of death, documented medical history and lifestyle and information gained through talking to relatives. A transplant may be the only possible treatment for some people, who would die without one. In a situation where there are not nearly enough organs available for the number of transplants required, it often comes down to a balance of risk and benefit.

Surgeons are always making judgements about the suitability of donated organs and are faced with the dilemma that - for example - more patients would die if they didn't receive a transplant at all. Guidance is available that sets out the risks and benefits of when an organ should be used. Ultimately this is a decision for the clinician, the patient and their family.

UK Transplant statement on directed donation of organs after death

15 April 2008

UK Transplant offers its condolences to the family of Laura Ashworth – and hope that they are able to find comfort in the knowledge that honouring her wish to be an organ donor has helped three people.

Organ transplantation is a subject that generates strong debate and opinions. Inevitably the intense media coverage about this case has focused on how donated organs for transplantation are allocated.

Opt in or opt out?

March 2008

The current “opt-in” system of organ donation – where individuals are asked to register their willingness to be a donor after their death – has been the subject of debate for many years.

Healthcare Commission review of heart transplants at Papworth Hospital

19 November 2007

UK Transplant welcomes today’s report by the Healthcare Commission which allows heart transplantation at Papworth Hospital to resume.

Throughout the two-week review, UK Transplant worked closely with the Healthcare Commission team to provide detailed statistical background information about the UK’s heart transplant programme.

UK Transplant already collects and shares much of the data suggested by the report’s recommendations, and will now look at ways to refine this process.

Every year in the UK, around 3,000 organ transplants are carried out for patients with end-stage organ failure for whom there is no other treatment. Overall success rates of these operations are high and steadily continue to improve.

Statement on Dutch reality TV show

29 May 2007

Donated organs are a precious resource and save thousands of lives through organ transplants every year. In the UK, donated organs are given freely and without condition, and are allocated to waiting patients strictly according to need and best match. There is no provision for deceased directed donation of the type envisaged in the Netherlands' Big Donor Show.

Taking on personality traits of donors

14 June 2006

While we are aware of the suggestion that transplant recipients take on aspects of the personality of the organ donor, we are not aware of any evidence to support it and, while not discounting it entirely, we have no reason to believe that it happens.

We would be very interested to see any definitive evidence that supports it.

NHS Organ Donor Register

2 February 2006

The NHS Organ Donor Register is a confidential, computerised database holding the wishes of 14 million people who want to donate their organs after their death to help others to live.

We can categorically state that no-one who is applying to add, amend or withdraw a registration has direct access to that database.

Equality of access to donor organs

8 August 2002

Donated organs are a precious resource. Their sharing is conducted under rules drawn up by the appropriate UK Transplant advisory committee, ensuring that each organ is given to the most suitable recipient and that each patient, as far as possible, is provided with equal access to available organs.

Alder Hey outcome

5 March 2002

The gift of organs for transplant in the UK was not adversely affected as a result of the Alder Hey organ retention inquiry.