On Sunday morning, 21^st. November 2004, in north Germany at a small town of Dormargen a momentous meeting took place of the First European Convention of patient support groups for the innocent victims of medical errors. It was an historic moment. In all, seven organisations were represented from six European countries

All groups present emphasised that medical care for the majority in Europe is very good, but inevitably mistakes occur and some of these have serious consequences to the patient. Recent research in the USA, UK and Australia show that about 10% of patients are harmed by medical errors. Of these approximately 1% have very grave consequences causing deaths and serious permanent injury. This means that medical errors have caused the deaths and serious disability of thousands of patients throughout Europe. These patients are left with a very poor quality of life and many are deprived of their means of economic livelihood. In addition, such medical mistakes cause enormous costs to European social systems.

During the meeting information was exchanged on the trauma and problems that were experienced by the victims of medical errors throughout the European countries represented. There was a remarkable unity of purpose and empathy between the member groups of the Convention as it became apparent that iatrogenic patients throughout Europe were facing similar problems.

The victim/relatives of serious medical errors can experience:

• Deaths due to medical errors are seldom disclosed honestly to the grieving relatives who are then left in trauma and unable to obtain closure.
• Denial of truthful information about the nature and extent of the iatrogenic medical condition. Evasive health professionals give misleading information because they have difficulty in coping with the results of the error. Also, they are often forbidden by their employer and/or medical insurers from disclosing evidence of damage. This develops into a conspiracy of silence known as a ‘cover up’. No injury = no lawsuit..
• Great difficulty in obtaining a full set of correct medical documents: the critical ones are often missing and some, to the patient’s knowledge, have been falsified, in some cases no records are available.
• Derogatory remarks with unfounded ‘psychiatric’ labelling are discovered in medical records.. This results in a character assassination with the sole purpose of discrediting the patient, and can be catastrophic, making it almost impossible for the patient to access much needed genuine diagnostic and remedial medical care. This destroys the patient’s well being and in the worse cases puts the patient’s life at risk.
• Denial of genuine diagnostics and treatment effectively blacklists the patient, for to give remedial care would be to acknowledge that damage has occurred.
• Difficulty of obtaining or denial of genuine second opinions - the professional ‘closing of ranks’ apparently is an international phenomenon.
• Great difficulty in pursuing the legal route to claim for justifiable compensation because of the excessive costs; the refusal of most medical experts, save for the dedicated few, to speak out against their colleagues; and the difficulty in finding competent medico-legal lawyers. This effectively sabotages any financial redress.
• Iatrogenic patients are perceived as being potential litigants - personae non gratae - and therefore to give them the truth about the medical damage suffered is seen as giving them valuable information that would allow them to win a law suit. Therefore the barriers come down.
• The professional allegiance appears to be stronger than allegiance to the vulnerable and innocent patient for whom both physicians and surgeons have an ethical, moral and legal commitment to provide genuine medical care.

The ‘Hit and Run’ analogy of the car accident best describes the medical error situation in which most seriously damaged patients find themselves. Health professionals, unlike car drivers who accidentally have an accident resulting in the death and serious maiming of other road users, have the option of not reporting that a serious medical accident and death has occurred. In fact they may ignore their moral and legal obligation to organise genuine remedial care for the injured victim, so denying that damage has occurred. Any car driver being so irresponsible would receive a prosecution. The denial of information and the refusal of genuine remedial care after the occurrence of a medical error is a tragic, unfortunate, but exact analogic example of the ‘hit and run’ phenomenon after a car accident. The groups represented below believe that the above constitutes medical abuse of damaged patients and contravenes Article 25 Universal Declaration of Human Rights United Nations 10/12/48. The Issue of European Human Rights for Patients should also be addressed.

There should be serious national and international meetings for dialogue with damaged patients and their support groups concerning the unnecessary problems facing the iatrogenic patient, the most immediate one being that of arranging genuine remedial specialist care. The present culture of ‘denial and cover-up’ needs to be changed to one of ‘openness and honesty’ when health professionals are able to be truthful with their damaged patients.

The Alliance demands that patients should be fully protected and their rights be put in statute:

• Statutory obligation for health professionals to disclose & report all medical errors and in particular any medical error that has harmed a patient.
• Statutory obligation to give an open, full and honest disclosure of the occurrence of the medical error, and the extent of damage sustained by the patient, to the patient and his/her family.
• Statutory obligation to provide genuine remedial medical care for the iatrogenic victim.
• Statutory obligation to provide fair compensation in case of serious iatrogenic damage – a Victim’s Compensation Fund
• Statutory rights to have copies of all manual and computer coded medical records and to correct them. Statutory obligation to obtain patient’s written permission before release onto any Electronic Data Base.
• Developing national and international systems of recording medical errors with their root cause analysis and a statutory obligation to include the patient’s experience.
• Developing national and international systems of improvements of healthcare by preventing medical errors.

This IEU Convention is calling for a culture change that would be of mutual benefit to both doctor and patient producing a true healing relationship between the physician and patient.