Ms Margaret Murphy:

I am delighted to have the opportunity to address the joint committee today. I am the external lead adviser of the World Health Organization's patients for patient safety programme which advocates for a culture of safe care that is more inclusive of patients and families. Advocates like me in the WHO are not career advocates. We have not chosen this work for ourselves, rather it is a response to circumstances that has brought us to this work. It is a responsibility that has been thrust upon us by events, one which we would gladly forfeit for the restoration of the lives and well-being of our loved ones who have been harmed by health care, albeit unintentionally. The previous Minister for Health actually described non-disclosure as tantamount to a hit-and-run road accident.

It is also very important to understand disclosure is not about blame, neither accepting blame nor apportioning blame, rather it is about integrity. It is about being truly professional and demonstrating that professionalism. It is about preserving that relationship of trust between doctor and patient. It is about learning and improvement. I would say exhortations, training and resolve alone will not work despite the very good work being undertaken at the moment by the HSE and the State Claims Agency in respect of rolling out a training programme. Exhortations alone will not work as they will take too long to work. There is an absolute need for mandatory open disclosure underpinned by legislation, which is certainly evidenced by a number of items. We are asking the legislators to do the right thing for the people, their constituents.

It is an inalienable right of any patient entrusting their own care and that of loved ones to the health care system to have the assurance that in the event of error, open disclosure will be practised, learning will occur and improvements to prevent recurrence will be put in place. The continuing mantra from patients leaving the courts is that they do not want it to happen to anybody else.

There is a very real need to break the cycle of deny and defend which catapults patients and families into a litigation process to gain access to truth and acceptance of responsibility. I would love the opportunity to illustrate this in respect of my family's case. Families have an entitlement to the respectful management of serious clinical events in accordance with the process outlined by the Institute for Healthcare Improvement, IHI White Paper. Closing ranks, lame excuses, collegiality and inappropriate responses undermine the system we are trying to bring to a state of excellence.

It will support staff, especially front-line staff in doing the right thing because with legislation they must do so in contrast to putting their heads above the parapet and stepping out from the crowd. It will address the shared abandonment which staff and families often experience in the aftermath of events. I would like to have an opportunity to give an example from a staff member. There is a need to move away from the language of "encouraging" or "promoting" open disclosure to saying disclosure is what we have to do because it is the law. The members of the Oireachtas are the law makers.

We need to dispel the myths. It will not result in an escalation of litigation, as borne out by the Michigan experience. I can furnish the statistics from it, for example, the experience of Dr Rick Van Pelt and his patient Linda Kenny. Neither will it result in avoidance of reporting because it is the law. Some 90% of the respondents to the Irish Medical Council survey said they trusted doctors to tell the truth. Is it not more unacceptable when that high level of trust can sometimes be betrayed?

We need to strengthen the effectiveness of the HSE training initiative in respect of disclosure. In regard to disclosure training events, I would like to know who attends, the attendance rates and the number of high level staff who attend, are being trained and are promoting disclosure. We need to interrogate this.

For me as an individual it is important because I am Kevin's mother, I was present at his birth. I know every detail of that birth. I was also present when he died and, as his mother, I needed and deserved to know everything about the circumstances which brought that about. However, over and above that, I needed to be assured that lessons would be learned and that those lessons would be disseminated all in the hope of preventing a recurrence. Patients like Kevin and me place our trust in the legislators.