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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 ( Campaign for the Advancement of 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 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].

SIN was 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.

Background: Medical errors have been attracting the attention of health services in the developed world for the last decade. As astonishing as it seems, there had been little or no record of the occurrence of medical errors, indeed no one had really any idea of their frequency or severity. It was probably true to say that medical errors and their consequences were considered of little interest. Confidence in the quality of health systems was found to be unjustified. In the UK we have over 50 years of accurate recording of car accidents but no systematic recording of medical accidents. Various countries decided to do a 'spot check' using a sample of medical records of patient admissions to hospital. These records would determine how many medical errors had occurred and then to extrapolate from the sample to the country as a whole. It was Prof. Charles Vincent who did the research in the UK. According to official Statistics from the NPSA the following results have been recorded:

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

It is worth noting that the number in the sample varies, and it is difficult to know whether there was a standard definition of what constitutes an adverse incident or whether there was variation in the rigor of recording.

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.

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.

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 and moving. SIN has campaigned for a more humane approach to medical errors for seven long years, and 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!

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.

It is quite extraordinary and very puzzling that the IEU - Alliance demonstration outside the Department of Health & 10 Downing Street received no publicity at all. Is any editor of a respected television channel or newspaper willing to state in public that Patient Safety is not of major public importance?

Patient Safety relating to medical errors is now thought to be SO important that it has been taken up at the GLOBAL level by the World Health Organisation and indeed ironically at the same time as we were delivering our Declaration 2005 on Patients' Rights to Downing Street and the Department of Health the UK government as part of Mr. Tony Blair's EU presidency in conjunction with WHO was funding a very prestigious Summit on patient safety at the Queen Elizabeth Conference Hall.

The Observer
The Times
The Sun
TV BBC
ITN
TV Channel4
TV Channel5
Radio5

Not one acknowledged receipt of the email and no one came to interview these public-spirited people of the IEU- Alliance. These good people had travelled from mainland Europe, some at their own not inconsiderable expense, to make this powerful gesture on behalf of victims of medical errors. WHAT IS THE PROBLEM? Is there some kind of censorship in operation?

This subject deserves a widespread and mature public debate including dialogue between the victims of medical errors and the health professionals.

A Patient Support Group called 'Sufferers of Iatrogenic Neglect' (SIN) was set up in Nov. 1998 to draw public attention to the trauma problems of the innocent victims of medical errors.

SIN has now joined forces with other similar Patient Support Groups from Europe to form the 'Iatrogenic Europe Unite' (IEU) Alliance and we are hoping that you may wish to update the development of SIN particularly as medical errors is now in the public arena for debate.

TheIEU-Alliance is meeting outside the D.o.H. Monday at 10.am 28th November to hand in its Declaration and then will go over to Number 10 Downing Street, also to hand in the Declaration.

emails: sinfo@boltblue.org & mag@sinfo.freeserve.co.uk
www.sin-medicalmistakes.org
www.ieu-alliance.org ( available Sunday 27th November)

Sophie Hankes, IEU-Alliance member and IEU-Alliance Co-Ordinator from the Netherlands, attended a Conference in Europe discussing Medical Ethics. She was invited to give a short 15 mins. PowerPoint presentation outlining medical errors from the iatrogenic patient's perspective, emphasing the difficulty of obtaining genuine medical care following a serious medical error causing permanent injury because of the barrier of potential litigation. She was very well received and no one challenged any of the assertions she made. One health professional said: " Give us indemnity, and we will treat the iatrogenic patient". Thereby endorsing the fact that legal liability does prevent doctors from giving 'open & honest disclosure' of medical errors and the full extent of damage sustained to the innocent victim of the error.
Medical-litigation as a barrier MUST go!! The only people to benefit are, surely, the medico-legal lawyers?

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IEU-ALLIANCE DELEGATE Receives publicity in the Netherlands

The following is an English summary based on the article recording Sophie Hankes' interview to a journalist that was published in 'Medical Contact' a weekly publication of the Royal Dutch Medical Association, 27th January 2006

"IATROGENIC PATIENT DEMANDS ATTENTION"
"The position of victims of medical errors should be improved. Physicians should be obliged by law to be open and honest, to provide follow-up diagnostics and remedial medical care and provide complete and correct medical records.
Sophie Hankes, Chair of Sufferers of Iatrogenic Neglect-Netherlands (and Co-Ordinator of the IEU-Alliance) formulated these demands in a letter to Prime Minister Balkenende, Minister of Healthcare Hoogervorst and other prestigious healthcare organisations. SIN-NL is one of the organisations who recently joined forces with other similar Patient Support Groups to form the Iatrogenic Europe Unite Alliance. This IEU-Alliance has recently presented their Declaration with these demands to the then President of the European Union, Mr Tony Blair, Prime Minister of the UK. (Monday 28th November 2005)

Ms Hankes says: we do not want retribution, we want to start a dialogue. We emphasize we do not wish to start legal procedures. But we do expect from physicians that they will empathise and learn to place themselves in the position of the iatrogenic patient. We demand that all cases of medical errors will be registered. The existing FONA-commissions, Netherlands, (Errors and Near Accidents) are reported but only internally within the hospital where the error was made, and are meant to be confidential and for use only by health institutions. Furthermore, we want a decent system of prevention. But above all, we want to achieve that the victims at present, who are denied medical care, will receive remedial medical care.

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SIN-UK at NPSA Patient Safety 2006 Conference Birmingham

SIN was delighted to be invited to attend the above Conference. The NPSA is to be congratulated for the amount of work it has covered in just a few years and the many areas of Patient safety it has initiated and is over-seeing. What is so admirable is that the 'patient experience' and 'patient (public) involvement' is central to all its work.

It was impressive to see how active the NPSA has been behind the scenes in promoting issues of 'Patient Safety' - its really big service has been to start to change the medical profession's mind-set of 50 years: that of denying the very existence of medical errors, and to wean them from their limpet-like attachment to the notion of 'infallibility', to one of accepting that even the best of doctors will make mistakes - to convince the profession that the reporting of medical errors MUST become an integral part of their professional life.

SIN is aiming for full, open and honest disclosure irrespective of legal liability and the waiving of anonymity in the interests of Patient Safety. However, we do appreciate that the first stage in this process must be to obtain the cooperation of the health professionals and for them to begin a process of frank self-criticism and to understand the necessity of logging and analysing medical errors in the first step towards understanding why they occur, with the aim of reducing these incidents. We hope that during this process they will begin to empathise with the iatrogenic patient and understand this perspective of medical errors.

What was particularly good at the Birmingham Conference is that the NPSA brought together many different strands from the Health Service: health professionals; administrators; risk managers; clinical governance managers; medical insurers and - perhaps best of all - patients. This was a very good opportunity to bring down the barriers by allowing DIALOGUE to take place and so bring about a change of culture. As SIN circulated we were able to give out IEU-Alliance leaflets and discuss our objectives. Most people were very enthusiastic and supportive of the IEU-Alliance. It was surprising how many people had their own stories to tell of seriously, iatrogenically damaged relatives!! One delegate wished to know why no patient from SIN had been on the Podium - why were they hearing form the USA & Ireland, but not the UK?

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IEU-Alliance member meets WHO at Copenhagen

We were delighted that our IEU-Alliance Co-Ordinator Ms Sophie Hankes, was able to meet with Mr. G. Schmetz of the WHO Regional Office, Copenhagen to hand in the IEU-Alliance 2005 Declaration and to discuss the problems facing the iatrogenic patient. WHO has a major initiative to make Patient Safety a top priority.

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