All groups present emphasised that medical care for the majority in Europe was very good,but inevitably mistakes will occur and approximately 1% of these have very serious consequences for the patient causing death or 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 very poor quality of life and many are deprived of their economic livelihood.

During the meeting information was exchanged on the trauma and probems that were experienced by the victims of medical errors throughout European countries represented. There was a remarkable unity and of purpose and empathy between the member groups of the Convention as it became apparent that iatrogenic patients throughout Europe were facing similar problems, one of the most  worrying being the difficulty of obtaining diagnostic tests and treatment following a serious medical error.Others reported intimidation and bullying of patients as they attempted to obtain truthful medical data. 

It was agreed to to form a common declaration for the protection of iatrogenic patients to be presented to our respective governments, both national and international.It was also decided to have future cooperation, so that an independent voice for patients can be heard all over Europe! Iatrogenic Europe Unite will give us many more opportunites to fight for the rights of the damaged patient.

Photos of Convention ( Courtesy of L'Association des Citoyens)

 It is hoped to release a joint Declaration shortly. A second meeting for IEU is being planned for July 2005 when decisions will be made about future action.

 A second meeting of IEU Alliance took place on Sunday 3rd. July 2005 in Utrecht, Netherlands. A new group from Poland ( Primum Non Nocere - First Do No Harm) attended the meeting. The Declaration, produced as an outcome of the First Convention, demands that patient's rights be put in statute and  was signed  by   six countries and these  make up the IEU Alliance. Further decisions were made as to how the IEU would distribute the Declaration and to which persons and institutions the declaration should be sent.

The IEU Alliance is intending to make sure that the views of damaged patients are taken into account and to make our concerns  known at the highest levels.Too often decisions are made by medical professionals, administrators and civil servants without taking into consideration the opinion and expertise of patients, and in particular the most important expertise and experience of the iatrogenic patient.

See below photos of the Seond IEU Convention.
Countries represented: Eire, Germany, Great Britain, Nertherlands,Northern Ireland, Poland
 

SIN-UK were delighted to act as hosts to our colleagues and friends in the IEU Alliance and were most grateful that the Alliance members were willing to travel to London for the meeting.

Sunday 27th November  was a very successful meeting. The Alliance continued to discuss the concerns of the iatrogenic patient and also to discuss  arrangements for presenting our Declaration to Downing Street coinciding with  Prime Minister Blair's occupancy of the Presidency of the EU; and to the Department of Health to the Chief Medical Officer ( Sir Liam Donaldson) and to  the Minister for Patient Safety, Mrs. Jane Kennedy on the following day.

The Alliance were delighted to welcome as guests to their meeting: Mrs. Susan Sheridan (USA)  who founded CAPS ( Consumers Advancing Patient Safety) and Martin Fletcher, World Health Organisation (Geneva). (See first photo below)

Susan Sheridan shared with us the two great tragedies caused by serious medical errors which had changed her life completely. Her young son Callum had been left seriously physically impaired from birth because there was a delay in diagnosing jaundice . Her husband died prematurely from cancer because a diagnostic test result had been filed incorrectly. This cost Susan's husband the chance of receiving cancer therapy which would have prolonged his life. After her husband's death in 2002, she decided to devote her life to the furtherance of Patient Safety and set up CAPS. All of us present empathised with her  and admired her great courage and perseverance.  Members of the IEU-Alliance have all had personal experience of serious medical errors or else have witnessed a family member suffer. Therefore, our experiences have been similar to Susan's. Like Susan we have tried to put our bad experiences to good use by being productive and trying to change the system so that other families do not have to suffer as we have done.

The IEU-Alliance  handed to Susan Sheridan ( CAPS) & Martin Fletcher ( WHO Geneva) a copy of the IEU-Alliance Declaration 2005: Patients' Rights in Statute.

[Susan Sheridan  gave a recorded interview with Fergal Keane on Radio 4 on Tuesday morning 17th January 2006 describing her experiences - thereby confirming experiences of all iatrogenic patients as stated in our Declaration].

Unfortunately, some members of the IEU-Alliance were obliged to leave the UK on Sunday & Monday evening because of  other commitments, however,  those Members of the IEU-Alliance who were able to remain were delighted to be invited to attend this very prestigious Summit. It was held in conjunction with the WHO, EU Commissioner for Health, Health Ministers, Chief Medical Officers, top civil servants and consultants were present, from all round the world. The WHO is  promoting patient safety at the global level and has formed a World Alliance for Patient Safety Committee. UK's Chief Medical Officer is the Chair of this committee.Presentations were given from many countries and experts in the field of medical mistakes, for the Conference's theme was Medical Errors and the need to reduce the incidents and so  improve patient safety.Patients from the WHO World Alliance for Patient Safety met at their own Forums, but on Sunday several were able to relate their own iatrogenic experiences to the Summit.

We found the Summit very interesting and encouraging. It was obvious from the presentations from several countries that a great deal of work over the last seven years has been going on behind the scenes. Medical errors are being documented and  categorised for analysis. The NPSA ( UK) being one of the first Agencies in the world to be given the task of recording medical errors  (anonymously). We were given examples of different types of errors and the research from various studies gathered from  around the world to show  what has been undertaken to ensure a reduction of such incidents and so guaranteeing improvements in patient safety. There had also been set up many Workshops in health institutions and discussion Forums to educate and to change attitudes, mind-sets and hearts. In fact to change the culture of the last 50 years which has prevailed in medicine: the need for more openness.

It was evident that political leaders at this Summit had made Patient Safety a priority and that the World Health Organisation had made it a Global Issue with the setting up of the WHO Alliance Steering Committee for Patient Safety with the Chief Medical Officer ( UK)  Sir Liam Donaldson as Chair. It was noted with satisfaction that the UK government was spearheading research and innovative pilot studies on how medical errors should best be addressed to lessen the trauma to innocent patient victims. We were also gratified that there was a universal recognition that patients themselves are intrinsic to the work of improving patient safety, and must be involved right at the heart of the matter.  The fact that the UK now has a Minister for Patient Safety, Mrs. Jane kennedy, demonstrates the priority and seriousness with which the UK government views the whole issue of medical errors and their impact on patients.

It is with Patient Safety in mind that the IEU-Alliance was set up and produced its own Declaration for Patients' Rights in Statute, one of them being the right to know if a patient has been seriously damaged irrespective of legal liability and the right to remedial care being  guaranteed together with a Victim's Compensation Fund set against a National Tariff/ European Tariff.

It was apparent that there was a clear political will to change matters for the better and the local leaders were in place to implement the necessary changes. However, we feel that there is still much work to be done to ensure that such changes percolate downwards and are introduced at the 'front-line'. Dialogue between health professionals and damaged patients not only would be mutually therapeutic but we also see this as an essential tool to ensure that changes do occur and as rapidly as possible.

The last two presentations given by Prof. Ian Kennedy ( Chair of the Healthcare Commission and of the Bristol Royal Infirmary Inquiry) and Sir Liam Donaldson  ( Chief Medical Officer, UK) were truly inspirational. For the first time we felt that we have had a glimpse of the 'Promised Land'? The damaged patient will no more be viewed as a'the hot potato' or 'a leper' , but will be seen as a very traumatised human being in need of couselling and genuine remedial care - in fact  in need of some TLC! (tender loving care).

Conclusion: Medical errors will always be with us. No system will ever be devised  to totally eliminate them. The question is : What do we do about them? The best we can do is to record them honestly and  to learn from them so that their incident rate  can be reduced.  A great deal of work over the last seven years has been on this part of the problem. But the other side of the equation MUST be addressed: the effect that serious medical incidents have on the innocent victims.What can be done about this? Open and honest disclosure irrespective of legal liability is essential and long over due. Legal liability should never be a barrier to medical care, as it is at the moment.

STUDY            DATE            NUMBER OF HOSPITAL            ADVERSE EVENT RATE
                                               ADMISSIONS                              (% of admissions)

Australia           1992                  14179                                       16.6

Denmark           1998                    1097                                        9.0

New Zealand      1998                    6579                                       11.2

United Kingdom 1999                     1014                                       10.8

Canada              2000                     3745                                         7.5

France               2002                       779                                       14.2

The conclusion that can be drawn is  that approximately 10% of patients entering hospitals will be subjected to a medical mistake. This is not an unreasonable expectation because the very complex systems are run by fallible human beings. The majority of these incidents will be minor,  with short lived results. However, it is reckoned that 1% of medical accidents result in very serious injury resulting in death or permanent disability. In the UK it is estimated that  34,000 patients will die annually because of a medical accident ( in the USA the figure is 100,000 )  and approx. 40,000 will be permanently and seriously damaged annually in the UK. obviously, everything that can be done to reduce the incidence of these medical errors must be done - and in so doing this will increase Patient Safety.
 
 

IEU-Alliance  Fourth Convention in Strasbourg
Sunday 12th March 2006

The IEU-Alliance arranged to meet in Strasbourg and held its Sunday  Convention to discuss strategy and the meetings that had been arranged for the following Monday. See photos below

IEU-Alliance Meeting with the Council of Europe

The Council of Europe is the continent's oldest political organisation, founded in 1949. It groups together 46 countries, including 21 countries from Central and Eastern Europe. It is distinct from the 25 nation European Parliament. Its headquarters is in Strasbourg, NE France.

Members of the  IEU-Alliance were privileged and pleased to meet with Alexander Vladychenko, Director General of the Directorate General III for Social Cohesion and and Piotr Mierzewski of the Department of Health and Partial Agreement in Social Public Health. We believe that the Council of Europe is the conscience of Europe for its duty is to bring to the attention of the European Parliament any issues that require attention. At the moment Patient Safety and Medical Errors are priority topics.

The Council of Europe has  produced a very good document entitled "The Development of Structures for Citizen Patient Participation in the Decision -Making Process affecting health Care". This emphasised the need  that citizen and patient should be an integral part of health care. A more recent report ,Strasbourg April 2005 has been produced which was investigating " Prevention of adverse events in health care, a system approach". Here there is an acknowledgment that 'patient safety' is a European Challenge. It was disappointing that the IEU-Alliance  was unknown at the Council of Europe when this document was being produced., otherwise it might have been possible to have had an input.

The IEU-Alliance was able to discuss the problems of the iatrogenic patient and stressed the fact that remedial medical care was often denied because of legal liability. The IEU-Alliance Declaration 2005 July was presented to Mr. Vladychenko and Mr. Wierewski. See photo below.

22nd May 2006
March 13th 2006 pm
Meeting with Mr. John Bowis OBE MEP for London  UK Conservative party

He is the Conservative spokesman on Health Consumer Affairs in the European Parliament and was former Minister of Healthcare UK.
Mr. Bowis serves on the Parliament's Environment, Public Health Food Safety Committee and it was in this capacity that an appointment had been arranged. The IEU-Alliance was delighted to meet with Mr. John Bowis who listened  most attentively as we discussed our concerns for the iatrogenic patient and the urgent need for remedial medical care irrespective of legal liability. He was presented with the IEU-Alliance 2005 Declaration.

Mr. Bowis lost no time in bringing to the European Council's notice at the Plenary Session just a few hours later that he had had a meeting that afternoon with a delegation of iatrogenic patient representatives..

See photo below. 

22nd May 2006
March 22nd. 2006
Meeting with Mr. Karl-Heinz Florenz at the European Parliament Brussels

Mr. Florenze is German and joined the European parliament in 1989 and is a member of  the European People's Party ( Christian Democrats) ( EPP) and European Democrats ( ED)

Karl-Heinz Florenz is Chairman on the prestigious  Environment, Public Health & Food Safety Committee. It was in his capacity of Chair that the IEU-Alliance had sought a meeting with him.  Members of the Alliance  were very well received and  he listened sympathetically as we discussed the position of iatrogenic patients: the necessity to establish statutory obligations to register  medical errors, give full disclosure and to provide genuine follow-up diagnostics and remedial medical care.  - the latter being the  most serious  and caused by  the problem of potential litigation.  The Alliance was delighted to be able to present him with the IEU- Declaration July 2005.  Mr. Florenze clearly stated his support to the delegation of the IEU-Alliance. See photo below

It is most gratifying that European politicians are taking the problem of medical errors so seriously. Recording medical errors is now a priority but the issue of providing genuine humane remedial care for  seriously damaged patients and their families remains a very urgent matter

10th October 2006

March 22nd. 2006
IEU-Alliance met with Mr. Karl-Heinz Florenz at the European Parliament Brussels. Karl-Heinz Florenz is Chairman on the prestigious  Environment, Public Health & Food  Safety Committee.  It was in his capacity of Chair that the IEU-Alliance sought a meeting

 In July the IEU-Alliance received written confirmation of Herrr Florenze's support. The issues raised by the IEU-Alliance impressed Herr Florenz. He appreciates that more attention must be given to the registration of medical errors and  that injured patients should be informed of damage sustained. He also recognised that  injured patients had difficulty in obtaining genuine diagnostic tests and treatment because of legal liability. He showed great compassion and understanding for the problem.

Herr Florenz believes that more improvement is needed in Europe in this area of Patient Safety. He has assured us that he will do his best to  represent our interests. To this effect he has requested a meeting for the IEU Alliance with officials  from the Commission's High Level Group dealing with 'Patient Safety'

On 12th September  a Teleconference took place between members of the IEU-Alliance and representatives of the PFPS Alliance. We were delighted to have this opportunity to hear at first hand about the great progress that had been made since the WHO PFPS Alliance came into being in October 2004.

The PFPS Alliance has been very busy developing workshops  in various parts of the world and it tries to link them with important national events e.g.. The Prestigious Patient Safety Conference in London in Nov. 2005. More recent Workshops have been held in San Francisco for North America and also in South America (Argentina). The WHO's remit is to improve Patient Safety throughout  the world - an enormous undertaking -  because there are such great variations in standards of medical care and expectations from Europe/ North America to Africa. Patient Safety and Open Disclosure were always high on the patients' agenda.

IEU-Alliance raised the problem of receiving genuine remedial medical care because of the difficulty of obtaining open and honest disclosure after a serious medical accident. The IEU-Alliance emphasises the need for DIALOGUE between patients and health professionals. We were told of the progress that had been made in the USA: special courts to hear exclusively medical litigation cases were being set up with the Judges to appoint the expert witnesses.

It was explained that the WHO PFPS Alliance was planning to hold a large Workshop in Europe in 2007.

It was concluded that that we have the same ultimate goals; that the Patients' Voice must be paramount and that we are all going in the same direction. In the words of Susan Sheridan: