Felicity has three sons. In 1995 she learned by accident from a nurse at St James's Hospital that all three had hepatitis. The National Children's Hospital at Crumlin knew the boys had contracted it from contaminated blood products, but never told them or their mother. If Felicity had realised one son was infected, she might have been able to save her other two.
The Lindsay tribunal adjourns today with such stories carved into people's memories. Everyone is determined to stop the tragedies happening again. But the chances of letting people slip through the system are the same as they were in 1995. Patients and their families have no more protection now than then.
What makes Felicity's case even more alarming is that it took place three years after the Minister for Health introduced a charter of patients' rights including information and courtesy about all aspects of diagnosis, treatment, risks and side-effects. None was shown to Felicity.
The hospitals she attended are excluded by the Minister for Finance from the kind of investigation applied to other areas of public interest. As well as Crumlin and St James's, major public voluntary hospitals such as St Vincent's, the Mater, Beaumont and Tallaght remain outside the Ombudsman's remit.
If you have a problem in any one, your right to a rigorous and fair complaints procedure is limited, by law. Kevin Murphy, the Ombudsman, cannot fight for fairness and transparency in that system because Charlie McCreevy has so far lacked the will to grant those rights to Irish citizens, through him. This could be done by regulation within three working days, if the Minister so wished.
In addition, Mr McCreevy continues to deny everyone the right to transparent investigation of clinical cases, although the area is now within the Ombudsman's remit in the UK. Given the difficulty of finding local experts willing to testify about or against their peer group in public, vast areas of medical procedure and practice remain insulated from public scrutiny, to the inevitable disadvantage of ordinary people.
It is difficult to understand exactly why the actions of the medical and healthcare professions are protected in this way. Micheal Martin, Minister for Health, promised to deliver "a comprehensive policy" on patients' rights last February, based on the 1992 Patient's Charter.
The charter, however, is a cosmetic document. It reassures people that their status as patients is underpinned by the State, when strictly speaking it is not. The charter has no legal standing, is not enforceable and in tough cases amounts to little more than well-meaning hot air. As Felicity's story demonstrates, its aspirations have not been taken to heart by the hospitals whose clients it is supposed to serve.
Without a statutory Bill of Rights to drive home the outcome of the Lindsay tribunal, insufficient statutory instruments exist to protect Irish patients as they deserve. Without extending the Ombudsman's powers to include public voluntary hospitals, there is no means of examining best and worst practice transparently and in the public domain.
Unlike in many EU states, Irish hospitals are not obliged to publish details of their patient care, whether globally or at individual level. There is no factual way an ordinary person can find out which is the best hospital to attend, or who is the best consultant to diagnose and treat a particular illness.
Hearsay rules. The medical profession relies not on the known performance of its members but on their general reputations. These are not built exclusively on clinical performance. Patients are referred on by the GP who is their first point of contact with the system, and after that must rely on the circle of professional friends a GP and his or her associates have built up.
Inevitably, that patronage means that a paternalistic ethos is maintained within which patients are at risk of being treated as infants. Signs that the ethos is past its sell-by date are building fast.
Stamina, rather than skill, can determine who advances and who gets left behind. Junior doctors are subjected to a series of physical hurdles requiring characteristics more like the instincts described in Lord of the Flies than a realistic 21st-century career path.
Patients can find that their illness is no longer their own property. It can belong instead to their doctor or consultant, who can legally choose what information to disclose as if on whim. While the majority of professionals operate Medical Council guidelines by showing "dignity and respect" to their patients, the increasing tension between effectiveness of care and efficiency of care management means that the person under the patient's skin can be ignored.
Each hospital does operate its own complaints procedure, and is accountable to the relevant health authority and the Department of Health, yet all do so without a statutory commitment to patients' rights. Client/consumer/patient interests, as articulated by the Irish Patients' Organisation, Patient Focus, or the Ombudsman, are effectively excluded from the entire process by all the agencies and professional associations concerned.
It is a long time since the medical profession occupied pride of place in Irish life by virtue of its professional status alone. Like priests, politicians and teachers, their special purchase as the most educated and wisest members of the community is gone. That does not imply that we ought to show them or their expert skills any less respect, but it does indicate that the instruments which still protect them need opening up to include us all.
mruane@irish-times.ie