"That Dáil Éireann:
deplores the practice, carried out over many years and up until recently, whereby the organs of deceased children were retained and disposed of without the knowledge or consent of their parents, a practice which has caused untold grief to hundreds of families; and
recognises the valuable work done by pathologists and medical researchers and their need for access to human organs-tissue on the basis of consent of the next of kin of the deceased;
calls upon the Government to:
publish a human tissue Act which would regulate by statute the practice of pathology within the State: and
mandate the health boards to appoint bereavement officers in all major hospitals;
that it is expedient that a tribunal be established under the Tribunals of Inquiry (Evidence) Act, 1921, as adapted by or under subsequent enactments of the Tribunals of Inquiry (Evidence) Act, 1979, to inquire urgently into and report to the Clerk of the Dáil and make such findings and recommendations as it sees fit, in relation to the following definite matter of urgent public importance:
post mortem policy, practice and procedure within the State since 1970, with special reference to all issues relating to post mortem examinations, organ removal, organ retention and organ disposal;
that the inquiry be completed in as comprehensive, economical and speedy a manner as possible; and
that the Clerk of the Dáil shall, immediately on receipt of any report from the tribunal, arrange to have it laid before both Houses of the Oireachtas."
I wish to share my time with Deputies Gormley, Cowley, McGrath and Healy.
On 17 October following a meeting with the Minister for Health and Children, Deputy Martin, the representatives of Parents for Justice withdrew from the non-statutory Dunne inquiry into the practice of organ retention, removal and disposal. They did so, in the words of their spokesperson, Fionnuala O'Reilly, "reluctantly and sadly". Frustration at the lack of progress of the Dunne inquiry and grave doubts as to the prospects of the promised statutory inquiry have been added to the great pain felt by many families. There should be no need to table this motion but the sponsoring Deputies have done so at the request of parents who feel they have reached a cul de sac and that the State has failed them. They consider that the route of a statutory inquiry as set out in this resolution is the only way they can establish truth and justice.
It is almost three years since this scandal came to light. Four bereaved mothers sought answers when they found out that their deceased children's organs had been removed and disposed of without their knowledge or consent after post mortem in a leading Dublin hospital. They were shocked that this could be done behind their backs by a trusted health care institution and they were insulted when their questions were met with silence or evasion. Fionnuala O'Reilly, Charlotte Yeates, Breda Butler and Margaret McKeener decided to speak out.
When the victims of a hidden injustice speak for the first time their voices are soon echoed by many other hidden victims. After they spoke out in December 1999 the four women received more than 2,000 phone calls in the space of three weeks. These bereaved families were beginning to ask questions about the treatment of their children after death in hospitals. What they found out was a cause of deep pain to them and a disgrace to a system in which such practices had become routine.
The organs of deceased children were removed without the knowledge or consent of the bereaved parents or next of kin. They were retained for various purposes, often lying for years in laboratories, and they were disposed of with hospital waste. The extent of organ removal from individual deceased children is distressing in the extreme, with many organs, including the brain, taken away and the integrity of the body completely destroyed.
To compound the scandal and to add further pain to the bereaved, it was revealed in February 2000 that one Dublin hospital had received money from a pharmaceutical company in return for the pituitary glands removed from the bodies of dead children. It has been established that this practice was routine for a decade from the mid-1970s to the mid-1980s.
It has been harrowing to listen to the accounts of bereaved parents and special tribute must be paid to those who have relived their grief in public to help others. I will place on record briefly two of those experiences. PJ and Josephine Cleere of Tinryland, County Carlow, were married in 1984 and on 1 May 1985 Josephine went into labour with their first child in a leading Dublin maternity hospital. The child had anencephaly and Josephine was informed coldly during labour that he would not live. The child was born alive but the hospital staff at first told the parents he was dead and refused them access to him. PJ and Josephine had to argue with the staff before they were allowed five minutes with their infant son who was christened Patrick.
PJ was sent home from the hospital and Josephine's request to hold her son again before being put under sedation was denied. So also was her request to be awakened if anything should occur. When Josephine awoke next morning, she was told her child had died in the night and a post mortem was already under way. No permission was sought for the post mortem and none given. The hospital refused PJ access to the inner car park of the building to collect the child's coffin. He had to carry it out in a hold-all. When the organ retention scandal came to light 15 years later, PJ and Josephine found that their child's intestines, spinal cord, liver, trachea, kidneys and other internal organs had been removed and were still retained in storage in the hospital laboratory.
The tragic case of the Cleere family demonstrates the attitude towards patients which prevailed for decades in the hospital system, namely, to tell them as little as possible. It was an outlook of condescension which took no account of the need for truth and understanding among people suffering illness, facing death or experiencing bereavement. The Cleere family, who have been through so much, say that some experiences are much worse than theirs.
An example is a much more recent case. Orla Conway died of sudden infant death in September 1998. She was taken to another leading Dublin hospital where it was decided to carry out a coroner's post mortem as she had died suddenly at home. Her parents were given no information about the post mortem. When the organ retention scandal came to light Orla's mother, Róisín McCormack, contacted the hospital to find out about her child. She was told that the child's organs had been removed and retained without their knowledge or consent. The brain, heart, lungs and spinal cord were still in storage in the hospital. The parents were presented with the organs in two white plastic buckets.
Since its inception Parents for Justice has sought a statutory inquiry. In early 2000, as a compromise between this demand and the Minister's preference for a non-statutory inquiry, a two-tiered inquiry was agreed. The first stage was the private inquiry chaired by Anne Dunne SC and the second stage an inquiry by a committee of the Dáil. In September 2000 in a letter to Parents for Justice the Minister expressed his full confidence in the private inquiry followed by the Dáil committee's public inquiry. He said that, in the unlikely event that this did not prove viable, he would pursue the establishment of alternative forms of inquiry, including a statutory inquiry under the Tribunals Acts. Parents for Justice co-operated with the Dunne inquiry and furnished it with a huge volume of information.
On 11 April 2002 the Supreme Court delivered judgment in the Abbeylara inquiry, effectively rendering powerless any further inquiry by a committee of the Oireachtas. The second stage of the process agreed by Parents for Justice was now in doubt. Parents for Justice met the Minister on 17 April and he undertook to seek advice from the Attorney General. Parents for Justice stated that despite extensive co-operation over the summer, no progress was made and there was no meaningful engagement from the Minister until last week's meeting. The group's deadline for withdrawal from the Dunne inquiry was the night of the meeting with the Minister. They duly withdrew, as they said, "with sadness and pain".
It is important to put on record the reasons for withdrawal. Parents for Justice stated
Given the considerable period of time which has now elapsed since we first brought our concerns to the Minister about the impact of the Supreme Court judgment on the proposed Oireachtas committee stage of the post mortem inquiry, we are of the view that we can no longer continue to co-operate indefinitely with the non-statutory phase of this inquiry which will not be in a position to complete a final report until 2004.
They also state that the inquiry "by its own admission to the committee of Parents for Justice on 4 April 2002 has not obtained 100% co-operation from health professionals to date".
Again I quote Parents for Justice
We do not believe we are being unreasonable in withdrawing from the Dunne inquiry. . . We attribute this debacle to the Minister's failure to address this issue with the sense of urgency and sensitivity that bereaved families deserve. The Minister's failure to engage meaningfully with us has resulted in this impasse.
I request that the Minister, in his response, confirms the cost of the Dunne inquiry to date. Is it the case that €4.3 million has been spent on this inquiry so far? This seems excessive for an inquiry that, in the view of the main participants, has achieved so little and is set to run so far beyond its deadline. I would also like the Minister to clarify the terms and conditions of Ms Dunne's appointment.
One of the most serious questions raised is that hospitals may have been in breach of the law and carried out post mortems under false pretences and failed to have deaths registered properly. Many parents and other next of kin allege that hospitals failed to notify their area coroner of deaths under anaesthesia. This failure would be in breach of the Coroners Act, 1962. It is also alleged that hospital clinicians told parents that a coroner had ordered a post mortem but that parents later found from the coroner's office that it had no knowledge of these cases. As Parents for Justice points out, the intervention of a coroner negates the need to obtain consent from next of kin for a post mortem. We must know how widespread these unlawful practices have been in Irish hospitals and this information must be brought to this House. We also need to know if the obscene exchange of pituitary glands for money was isolated or widespread.
Most of the focus so far has been on Our Lady's Hospital for Sick Children in Crumlin and the National Maternity Hospital, Holles Street, but this House must learn the full facts from a proper investigation to establish whether this post mortem practice has been continuing throughout the State. Has it been part of the practice of hospitals elsewhere in the jurisdiction?
I urge the Government to support this motion. I note the Minister has tabled an amendment. Even at this late stage I urge him to withdraw his amendment and support the motion, which has the support of 22 Deputies, to allow the bereaved, those at the centre of Parents for Justice and those who depend on the energy and effort on the part of members of that group to find truth and justice at last.