BMA launches joint campaign on organ donation

(issued Tuesday 13 Jun 2000)

The British Medical Association today launches a major public campaign involving patient organisations, transplant and donor charities and medical and nursing royal colleges in a co-ordinated effort to improve organ donation rates and strengthen the UK transplantation programme.

The BMA believes there is an urgent need for a radical review of the organ donation system in order to develop a legal and practical framework within which organ donation can prosper and more lives can be saved.

Over the last decade the gap between the number of people needing an organ transplant and the number of organs available for donation has been increasing.

Official statistics show that over the five year period 1995-1999, about a thousand patients died whilst on the waiting list for a heart, heart and lung, lung or liver transplant. In fact the actual number of people dying whilst awaiting an organ transplant is likely to be considerably higher. Many will have died without even reaching the waiting list and this number does not include the thousands of patients who die because there are insufficient dialysis facilities to meet the demand. Many more patients’ lives are dominated by the burden of dialysis.

Since the major debate on organ donation at the BMA’s annual meeting in July last year, the BMA’s Medical Ethics Committee has been consulting and working with a wide range of organisations to develop a campaign strategy.

Over the coming months, the BMA will be working with the Patients’ Association, the Intensive Care Society, the three major kidney charities, the surgical Royal Colleges, transplant co-ordinators and others to stimulate a major public debate on organ donation and to highlight the need for a consolidated approach to improving all aspects of the transplantation programme.

Speaking at the press launch, Dr Michael Wilks, Chairman of the BMA’s Medical Ethics Committee will say :

“Organ transplantation saves lives and it can transform the lives of people suffering disability and the tremendous burden of dialysis. I am absolutely delighted that we have so many organisations keen to work together to raise public and political awareness of the urgent need for change.”

As a contribution to the start of the campaign, the BMA today publishes Organ Donation in the 21st Century which sets out the current state of play and outlines the major options for change.

The BMA’s proposals include :

· The introduction of a single, comprehensive piece of legislation covering all aspects of organ donation
· The development of a National Transplant Service to take over and expand on the work of the UK Transplant Support Service Authority
· An expanded network of organ donor co-ordinators
· The development of consultant led multi-organ retrieval teams, with improved support for donor hospitals
· Routine checking of the organ donor register before any approach is made to a potential donor’s family
· A 24-hour 7 day a week telephone helpline
· Changes to the regulations on live donors, so that related and unrelated donors are safeguarded against undue pressure
· If public opinion moves in favour, the introduction of a system of presumed consent for organ donation, with safeguards to protect the position of grieving families.

The broad based alliance of organisations that have agreed to work alongside the BMA, includes some that fully endorse the BMA’s policy document and others who are keen to work on improving the transplant infrastructure but have reservations about some aspects of the BMA document, particularly presumed consent.

Details of the position of supporting organisations are included in the press pack.

The BMA is clear that any move to introduce a system of presumed consent, could and should only proceed after the fullest possible public debate, and with the support of the public and health professionals.

Dr Wilks says :

“Presumed consent is only one part of the jigsaw. If public opinion moves towards a change in the law, I think it could be a valuable contribution to increasing the number of organs available, but there are so many aspects of the transplantation system that need improving and boosting, that a radical review of the whole organ donation system seems the logical next step and one around which we can all unite.”

Professor Robert Sells, consultant transplant surgeon in Liverpool, says :

“As a transplant surgeon I share the joy of patients and their families when their lives are saved by a transplant. They lead normal lives, get back to work and really enjoy living. I also have the frustration of not being able to help patients, of telling them that their wait for an organ will go on interminably and of seeing patients die who could have been saved.

“Organ transplants offer so much to so many. Nearly 5,000 people await a kidney: less than a third will get one. We must do better than that and there are lessons to be learned from other European countries, as well as obvious new areas for development, which will help our patients.

“This needs urgent action and must have a national, strategic approach.”

Mr Chris Denham, a research engineer from Bracknell in Berkshire, who received a kidney nearly four years ago, says :

“I can never fully express the gratitude I feel to the young woman who donated her kidney to me and to the transplant service who transformed my life. I have been so lucky but there are thousands of people who also need and deserve a chance of life. I am now back to full health and have a fourth child, aged two and a half who makes me feel that life is starting all over again. I carry a donor card. My own kidney may not be much use to anyone but if other organs of mine could be used to save a life, I would be very glad indeed.”

Ends


A summary of the BMA’s document is attached, along with a list of organisations supporting the campaign. The document can be found on the BMA's homepage at http//:www.bma.org.uk

17 June is the fiftieth anniversary of the first kidney transplant (in Chicago)
16 – 13 July is National Transplant Week
27 – 30 July is the Transplant Games (athletics fixture for more than 1,000 athletes who have received a transplanted organ)

SUMMARY
Organ Donation in the 21st Century
Time for a consolidated approachEach year many people die waiting for an organ transplant. At the same time, bodies are buried or cremated complete with organs that could have been used to save lives, not because the deceased objected to donation but simply because they never got around to carrying a donor card or informing their relatives of their wishes.

Over the last decade the gap between the number of people needing an organ transplant and the number of organs available for donation has been increasing. In 1998 7% fewer organ transplants were carried out in the UK than in 1997; in the same period the waiting list increased by 3%. This is part of a continuing trend. The statistics for 1999 compared with 1998 show no change in the number of transplants and an increase of 3% in the waiting list.

Official statistics show that over the five year period 1995-1999, about a thousand patients died whilst on the waiting list for a heart, heart and lung, lung or liver transplant. In fact the actual number of people dying whilst awaiting an organ transplant is likely to be considerably higher. Many will have died without even reaching the waiting list and this number does not include the thousands of patients who die because there are insufficient dialysis facilities to meet the demand. Many more patients’ lives are dominated by the burden of dialysis.

The BMA hopes that the publication of its paper (available on request) will stimulate wide-ranging debate - amongst health professionals, policy makers and the public - and will encourage a concerted action for change. The BMA believes there is an urgent need for a radical review of the organ donation system in order to develop a legal and practical framework within which organ donation can prosper and more lives can be saved.

In particular, the BMA would like to see:

1. The introduction of a single, comprehensive, piece of legislation covering all aspects of organ donation - from both live and
cadaveric donors:

· to provide a clear and unambiguous framework within which organ donation may take place;

· requiring that the most up to date guidelines are followed in determining death by brain stem tests before organs are removed;

· to remove the distinction between related and unrelated live altruistic donors. All live donations should be subject to the same rigorous assessment, either by the Unrelated Live Transplant Regulatory Authority (ULTRA) or some other mechanism, to ensure that the potential donor is acting voluntarily and free from pressure;

· unless the individual or the close family objected to organ donation, to give legal authorisation to the use of invasive procedures, after death, to protect organs in the period leading up to the transplant in order to facilitate greater use of non-heartbeating donors; and

· to introduce a system of presumed consent, with safeguards, for adults whereby it is assumed that individuals wish to
donate organs after their death unless they registered an objection to donation during their lifetime. Doctors should, however, have the discretion not to proceed if the potential donor’s wishes are not known and it is clear that the donation would cause major distress to a first degree relative or long-term partner.

2. Changes to the organisational structure of the organ donation programme, including:

· the development of a 24-hour 7-day-a-week telephone helpline to answer any questions related to organ donation from
journalists, health professionals or the general public;

· the development of a National Transplant Service to take over and expand on the work of the UK Transplant Support Service
Authority;

· consideration to be given to whether there are grounds for making the list of criteria for exclusion of donors less restrictive;

· the development of an expanded network of organ donor co-ordinators, employed and trained by the National Transplant
Service;

· changes to current training and staffing arrangements to overcome the shortage of transplant surgeons;

· the development of consultant-led multi-organ retrieval teams working in zones and improved support and reimbursement
for donor hospitals, as recommended by the Royal College of Surgeons;

· the establishment of additional critical care beds;

· the establishment of training courses along the lines of the European Donor Hospital Educational Programme (EDHEP);
and

· the development of a “UK model” for organ donation building on existing good practice in the UK and borrowing, where
appropriate, from practices overseas modified as necessary to suit the UK situation.

3. Changes to the established practice of organ donation, so that:

· the organ donor register is routinely consulted by the transplant co-ordinator when potential donors are identified in order to
ascertain the potential donor’s expressed wishes before any approach is made to the family;

· wherever possible, the death certificate is issued to the family before organs are removed for transplantation;

· the term “brain stem death” is replaced with “death confirmed by brain stem tests”; and

· the establishment and use of protocols in each unit, setting out the criteria for donation, so that it becomes the norm to
consider organ donation and all suitable deaths are referred to the transplant co-ordinator.

Some of the changes proposed in this paper are likely to be controversial and need to be debated thoroughly before being implemented. Recognising the risk of alienating some sections of the public by appearing to move too quickly, the BMA nonetheless considers that there are good arguments for seeking change. Furthermore, it believes that with careful explanation, these proposals will win the support and backing of a majority of health professionals and the public. The BMA invites those individuals and organisations with an interest in organ donation and transplantation to work together, with the media, to present information in a clear, sensible and balanced way to gain support for a radical review of the organ donation system. A consolidated approach is needed to save lives.

Organ Donation in the 21st Century. Time for a consolidated approach is available from: Medical Ethics Department, British Medical Association, BMA House, Tavistock Square, London WC1H 9JP (http://www.bma.org.uk)Organisational support
Supporting the campaign and endorsing the BMA's paper

British Kidney Patient Association
Intensive Care Society
National Kidney Federation
The Patients Association
Royal College of General Practitioners
Royal College of Surgeons of Edinburgh
Transplants in Mind (TIME)


Supporting the campaign but not endorsing the BMA's paper

British Organ Donor Society (BODY)
British Transplantation Society
Doctor-Patient Partnership
National Kidney Research Fund
Royal College of Nursing
Royal College of Paediatrics and Child Health
Royal College of Physicians
Royal College of Physicians and Surgeons of Glasgow
Royal College of Surgeons of England
UK Transplant Co-ordinators Association


Formally endorsing the BMA's paper but not actively supporting the campaign

British Heart Foundation
The Manningford Trust
Royal College of Physicians of Edinburgh