Mr. Stephen McMahon:

I would like to clarify that my colleagues, Ms Margaret Murphy and Mr. Mark Molloy, join me today as associates in an alliance with the Irish Patients Association to address this important issue. I take the opportunity to publicly congratulate Mr. Molloy and his wife, Róisín, on their receipt of a People of the Year award last Saturday.

I thank the committee for the invitation to meet it. While we respect that it is hearing from a range of stakeholders, as patient advocates, we call for a statutory requirement on health care professionals to disclose to patients when an adverse event occurs. My older brother, Raymond, has cerebral palsy and paraplegia resulting from an injury at birth. My wife, Fiona, suffered from severe post-natal depression following the birth of our children. These and other experiences led us to found the Irish Patients Association.

The Irish Patients Association was launched on the RTE programme "Today with Pat Kenny" 21 years ago. At the time patients were disempowered; they had no voice; they were talked down to by the system. Even within the system there were these silo effects. The patients' charter was nothing more than a piece of paper, with no real commitment to deliver on its aspirations. The words "patient advocacy" were new and for many on waiting lists, the advocate of choice was their local Deputy. During the years we have been involved in many areas of the health care system, always faithful to patients and their families by keeping them at the centre of all decision making. Reform has been glacial. However, much has been done to improve quality and safety. We welcome and support this, but it is a matter of trust: trust in the system for patients and wider society. It is, however, also a matter of rights. We cannot remember everyone, but we can remember Mrs. Rebecca O'Malley whose cancer diagnosis was delayed; the late Mr. Kevin Murphy whose mum, Margaret, is with us this morning; Mrs. Savita Halappanavar who died as a result of delayed treatment; Ms Bimbo Onanuga whose death was recorded as medical misadventure; Ms Dhara Kivlehan who died as a result of delayed treatment; Mr. Colin Evans who died as a result of a medication error; the late baby Mark Molloy whose dad, Mark Snr., is with us this morning and the late Mr. Gerry Feeney, aspects of whose hospital care were deemed to be unacceptable.

Do we have a problem?Yes, we do. I refer the committee to a recent study, the findings of which were published in the British Medical Journalon 10 February 2016, entitled, The Irish National Adverse Events Study, INAES: The frequency and nature of adverse events in Irish hospitals - a retrospective record review of 2009 data byNatasha Rafteret al. One in eight patients admitted to hospital during 2009 experienced adverse events. Of these, 20.8% witnessed moderate recovery within one month; in 8.6% of cases there was a permanent disability of less than 50%, whiile in 6.7% cases the event contributed to the death of the patient. How many of these patients were told that the mistake was avoidable? This is just the tip of the iceberg as no adverse events were studied in the community, by the family doctor or in nursing homes and there was no study of the impact of unequal access to health care for those waiting too long to be seen or undergo surgery.

The issue of consent has changed the doctor-patient relationship in the past 20 years. The HSE's policy on consent states, "It is a basic rule of common law that consent must be obtained for clinical examination, treatment or investigation". The Constitution reaffirms this rule, as does international law. Therefore, any exception to the rule would be subject to intense judicial scrutiny since the purpose of the rule is to uphold one of the most basic of all rights, that is, the right to bodily integrity. The argument in favour of consent as an indispensable precursor to treatment is born out of the concept of patient autonomy which, in turn, is based on the rights of individual self-determination and bodily integrity in Article 40.3 of the Constitution.

Simply put, a patient does not consent to an adverse event. As stated, it is not lawful to undertake an examination, treatment or an investigation without such consent. Surely, the patient has a statutory right to be told when such a violation of consent occurs or if the management of services has caused an event?

Who is best served by the establishment’s current position that there should not be a statutory obligation for the patient to be told? Management, policymakers and other agencies have an obligation to disclose adverse events. The Medical Council of Ireland is not an inquiry as it certainly does not use information it has and knows the consequences of issuing it or not.

In addition to supporting the law, a patient safety advocacy agency must be independent of the Department of Health and the HSE similar to HIQA which is a jewel in the regulatory crown. The language of advocacy is moving from passive participation to the language of rights and active involvement in many ways. Change and reform in the health care system must not be preceded by preventable funerals and injury to patients. We need to make open disclosure the law because it is needed and members can do it

I would like during the questions and answers session to address the issue of accountability of management and public servants who govern the day-to-day system.I thank the Chairman and members for giving me this opportunity. I introduce Ms Margaret Murphy.