We need time to read and absorb the report before giving our considered views in detail. It is only fair for all of the parents involved to be given the opportunity to read the report in full.

It must be remembered that everyone involved in this scandal has already suffered the enormous grief of losing a child. The added insult was that parents then discovered that their child had been stripped of its organs and in some families, more than one child is involved.

To date Alder Hey and the University have failed to apologise for the removal and retention of organs without consent, a point which has been highlighted in the Redfern Report today:

"Alder Hey and the University should learn from their many errors and mistakes.
A full and humble apology from both would be an excellent starting point."

The report has been very damning of the failure of Alder Hey and the University to fully co-operate with the parents, despite any claims that the hospital have made to the contrary in the last 17 months. What parents have been asking for and now demand, is honesty and transparency from both Alder Hey and the University.

Pre 1988 and post 1995

We are dismayed by the prevailing climate of paternalism, that the doctor knows best, that existed pre-1988 by most, if not all, clinicians. There is no doubt, had there been more robust guidelines in place before 1988, the shocking events post 1988 would not have occurred. We are concerned that the period pre 1988 has not been fully investigated and there was a lack of co-operation from people involved in giving evidence to the inquiry.

van Velzen

Although we have always maintained that this was not only the work of one rogue pathologist, as Alder Hey had wished us to believe, the harsh reality is that Professor van Velzen systematically and deliberately abused and deceived his positions, both at the hospital and University.

His actions have absolutely no justification whatsoever. We note that within the summary of the report, that Professor van Velzen was guilty of amongst other things, "unethical and illegal retention of every organ in every case for the overriding purpose of research." The report sets out 20 separate serious allegations against Professor van Velzen, including lying to parents, deceit and the falsification of documents. We note that the Inquiry have stated that his conduct should be reported to the GMC [General medical Council] and the Director of Public Prosecutions and we welcome the consideration of criminal proceedings.

Management

We have always been critical as to the role of the hospital and University management. The report highlights 19 specific criticisms of failure by management. The report strongly emphasises the failure by the management at Alder Hey and the University to audit, follow guidelines, supervise and ensure that informed consent had been properly obtained. Equally, when management first became aware in the early 1990s of the growing collection of retained organs, they failed to act and thereby condoned the actions of the clinicians.

We would stress our criticism, as reinforced by the report, which not only relates to the failures of the management from the late 1980s onwards, but also the disgraceful mistakes that management have continued to make in releasing information to parents from September 1999. We, as parents, have been betrayed, not only by the clinicians but also by the management, past and present.

The time has now come to take the issue of release of information out of Alder Hey's control and to put in place an independent body that does not have a vested interest in delaying and distorting information.

Coroner

When considering the issue of consent the public must not forget the role which has been played in this matter by the Coroner. There is damning evidence against the former Liverpool Coroner, Roy Barter, in relation to his failings to properly carry out his duty in his role as the Coroner of Merseyside.

Research

We are concerned that the Inquiry was only able to establish that limited research was carried out. Even then there is an indication that these research papers are fundamentally flawed. The public must be under no illusion that the vast majority of the organs were removed and retained for absolutely no purpose whatsoever.

PITY II would like to stress at this point that the parents generally are not against medical research, but as the Redfern report states:

"This benefit cannot be ignored, but it is not justification for ignoring the parents' rights."

Research and medical development must continue only with the full knowledge and consent of the relatives concerned. Positive consent must be obtained and that consent must be full and informed. It is up to the medical profession to ensure that the individual who is giving consent completely understands and appreciates the nature and implications of that consent.

Recommendations

We have only had a very limited amount of time to consider the CMO's [Chief Medical Officer's] recommendations and our initial comments are as follows:

Unclaimed Organs

As far as we can establish there remains thousands of unclaimed containers of organs at both Alder Hey and the University. It is clear from the Redfern Report that research students have had free access to these organs from October 1995. It is still the case that no decision has been taken as to what will happen to these containers. This requires the urgent attention of Alder Hey the University and the Chief Medical Officer.

Pharmaceutical Involvement

It has now been established that body parts from the living and dead children have been sold to pharmaceutical companies. Despite the fact that PITY II specifically requested the Redfern Inquiry to investigate their concerns about the sale of body parts the Redfern Report is silent in relation to this matter. The investigation of these sales needs urgent investigation by both the CMO and the Government.

The report has not answered all of our questions. In fact, it has raised many new issues that need to be urgently considered. We think that the period before 1988 has not been adequately investigated, nor has the period post 1995. The report does not deal in sufficient detail with the issues relating to research and in relation to the involvement of the pharmaceutical industry in the purchase of body parts from Alder Hey.

On behalf of PITY II I would like to thank Goodmans, advising Solicitors to PITY II, and Wendy Natale of the Community Health Council.

ENDS.