Evidence for Health, Wellbeing and Local Government Committee on Organ Donation

Patient Concern regrets that we were unable to accept the invitation to give oral evidence to the committee. We would have been happy to do this, but were given only a few days notice. We submit the following written evidence.

Overall summary of Patient Concern’s views:

The pool of available organs must be increased and more vigorous efforts must be employed to bring this about. Ministers tend to see presumed consent as a cheap 'quick fix’, something that will make them look as though they are taking decisive action to boost numbers. The evidence for this boost in numbers is questionable and changing the law in this way could well result in a backlash affecting the whole transplant programme and damage trust in the medical profession. We consider that presumed consent is unethical and unjustifiable. The state has no right to 'presume’ ownership of our bodies, in life or after death.

1. Informed consent is at the heart of all medical decisions. This position has been hard won but we have moved on from the system where we assumed that 'doctor knows best’ and took it for granted that we would go along with what they suggested. Presumed consent is not informed - in fact, it is no consent at all. How can you consent to something by failing to give consent?

Organ donation is an altruistic gift. In fact, the very definition of 'donation’ is 'something freely given’. A donation cannot be taken by default.  Presumed consent changes us from volunteers into conscripts. Our only option is to register as conscientious objectors and conscientious objectors may well fear discrimination.

2. The description of systems of presumed consent as 'weak’ and 'strong’ is pejorative and we have not heard them identified in this way before. They are usually distinguished as 'hard’, where relatives are not routinely consulted, or 'soft’. The hard option is rarely employed and has no place outside a fascist state where individual liberty counts for nothing.

Currently 40% of families refuse permission for donation from a relative. Since   September 1 2006 relatives have had no legal right to overrule the express wishes of the deceased. Patient Concern supported this change in the law, as our view is that individual choice should be paramount - but in fact it has made no difference to the number of organs available. Doctors are unwilling to disregard relatives at such a distressing time and it is always necessary to obtain information from relatives for screening purposes, so presuming consent may not make a substantial difference.

3. A presumed consent law does not necessarily increase the number of available organs. Sweden has had such a law since 1996 and their donor rate is lower than ours. Much has been said about the great success of Spain, which has three times as many donor organs as the UK. It is important to remember that Spain changed the law to presumed consent in 1969. Ten years later their donor rate was much the same as ours. It was only when a newly appointed head of transplant revolutionized the system that their donation rate rose. They now have three times as many donor organs as the U.K. It is no coincidence that they also have three times the number of transplant co-ordinators and three times the number of intensive care beds.

The crucial element in a successful donor programme is the presence of sufficient well-trained transplant coordinators who can spend as much time as necessary with families at this vulnerable time. Plans for a substantial increase in coordinators and also organ retrieval teams in the UK are currently under way following the Task Force report, which reckoned that the number of organs can be increased by 50%. However, our view is that an increase in intensive care beds must also be a priority, otherwise improvements may be undermined.

4. We have only anecdotal evidence to offer on the possible backlash that might follow a change to presumed consent. A number of people have contacted us saying that they intend to tear up their donor cards if such a law is introduced, as they feel it devalues their gift. We have also heard from patients, both pre-transplant and post-transplant, who said they would feel guilty/unhappy at the idea that the organ was taken from someone who might not have been willing to donate.

5. The Human Tissue Act came into force only three years ago. The purpose of the Act was to ensure that explicit consent is always obtained for the removal of organs. It was necessary to restore confidence in the medical profession, which had been badly dented by the scandal of Alder Hey and other hospitals, leaving a deep-rooted suspicion of organ removal. Rewriting this Act within such a short time period, for reasons of pure expediency, would only undermine trust all over again.

6. There are many ways in which the donor pool can be increased but not enough effort has been made. Surveys show that a large majority of people are willing to donate, but less than one in four sign up to the donor register - 22% in Wales. Once those who find it easier to give a 'politically correct’ in the street are discounted, the reasons are most likely to be lack of knowledge or simply inertia. It is the same inertia and lack of knowledge that supporters of presumed consent will rely on to boost the donor supply. The inevitable result is that many people who would have wishes to opt out will not have done so and will have organs taken against their will. This is unacceptable.

When Sir Liam Donaldson announced his backing for presumed consent with a fanfare of publicity (making a U-turn since the time of the Human Tissue Act) over 2000 joined the register. This indicates how dilatory we have been at spreading the word.

It seems only common sense that everyone visiting a doctor’s surgery, hospital or blood donor unit should be provided with information about the register and asked if they are interested in joining. Tick boxes on driving licence applications etc are easily ignored - once again, information should always be provided. Legislation should be altered to allow voting registration papers to invite registration.

7. We are not familiar with the legislative powers in Wales but it seems reasonable that each country should make its own decision on such an emotive issue. We suspect that, after ministers in Wales have supported presumed consent so vigorously, it is probably a 'done deal’. We hope that this is not so, because Wales has a proud tradition of doing what is right for patients e.g. free prescriptions, free hospital parking. Presumed consent may seem to be in the interest of a small minority of patients but it is an insult to the rest of us

Joyce Robins

Co-Director, Patient Concern