sensitive sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive matter sensitive Retained Organs Audit 2009 ( Willis Report) & The Rotunda Hospital Look Back Exercise ( Carter Report) These two reports are of a serious nature and the matters documented in them is extremely distressing to read and particularly in relation to the Rotunda Hospital. There are copies available to read on our website ( www. isands. ie) if you have not yet seen them and you want to. The National Audit on Organ Retention came about as a result of recommendations in the Madden Report, following the collapse of the Dunne Inquiry. ISANDS was invited by the HSE and Audit Team to attend a meeting on the morning that both publications were made available to the public. We were aware that a National Audit was taking place but were unaware that a separate investigation had taken place in relation to the Rotunda Hospital until the report was put on the table in front of us at the meeting. We were horrified to discover that a problem had been flagged in 2007 relating to postmortem practices from the 1999/ 2000 Organs Retention Scandal to 2007 and we had not been made aware of this. The National Audit Report highlights many areas we should all be concerned about and ISANDS have submitted eight pages of questions in relation to the reports. We have not yet received answers but have been told we will. The Audit was based on a recommendation from the Madden Report which states " an independent audit must be carried out of currently retained organs in all hospitals in the State." If you read the National Audit Report you will see that most hospitals around the country record NIL under retention of organs pre 2000 which is absolutely unacceptable. Are we to believe that all of the hospitals in key areas of the country at that time were not doing postmortems and if that is the case why were families waiting on results? Where did their baby's post mortmes happen and why did the report not record transfers from other hospitals? Why did the Audit not include and record the number of postmortems which had taken place in each hospital in each year to allow us ( the public) but more particularly to those who are bereaved, the opportunity to see how many postmortems we are talking about? Yet again, we are relying on ' certain' information, just like the consent process when information was withheld and caused this awful situation. It is all so disappointing and makes me really feel so very angry. ISANDS had no input in relation to the National Audit which is shameful when you consider the experience we have in relation to stillbirth and neonatal death. In the UK when they were going through a similar audit the Government acknowledged the role of parent experiences and included parents from the UK in the audit process. Not here though, we have to bring in the ' experts'!! Another very upsetting feature of the National Report is the fact that at every given opportunity each hospital highlights it's own bereavement information and no where is there a mention of ISANDS ' A Little Lifetime' pack. Have we wasted our valuable time as volunteers for 26 years? Do the hospitals not realise the role that A Little Lifetime plays at the most tragic of times in our lives. I want to state very clearly that A Little Lifetime was like a lifeline to me when my daughter died in 1993. There was no internet for me to search for someone to connect to, no forum for my aching heart to turn to. I read the pages of that little book over and over until they almost fell from the stapled cover. Tears have blurred the written words that guided me through many lonely hours of grief. I have always paid tribute and thanks to the parents who put it together because out of their pain they provided me with a much needed guide to get me by. Now when it could have been given accreditation and acknowledgment the establishment failed to recognise its importance or even a mention of it anywhere but decided to boast of their own literature. This is the same establishment who only some few years ago would not have know the first lines to put in these booklets to offer comfort. We could all account story after story here of how parents in the past who had a stillborn baby or a baby who died after birth were treated by the establishment. Shame on those who documented the audit if A Little Lifetime was mentioned by anyone and there is no account of it, but other than ISANDS I don't hear anyone saying this. Other outside literature is mentioned in several sections of the report. This aside, the very serious matters which are now left to be answered from the Dunne, Madden and National Audit Reports are still outstanding. Parents and families who were affected by the Organs Retention scandal in 1999/ 2000 are still waiting. Nothing has changed since then, several apologies later these families still wait for something, anything that can tell them why they had to deal with the awful reality of organ retention and disposal ( sorry for using such a dreadful term). Surely these families deserve at the least the acknowledgment that their children have played a massive contribution to benefit society in general in relation to research and the education of our medical profession. A national gesture of tribute needs to be isands newsletter 38

sensitive matter sensitive sensitive matter matter sensitive sensitive matter matter sensitive sensitive matter afforded to these children and their families. Every miracle of life and every miracle of a child's recovery from surgery or treatment, the decrease in sudden infant death; our children played a part. Every medical break- through, progress in studies into conditions that caused death and children living with life limiting conditions, our children played a role. All the improvements and understanding learned before the world wide web existed; our children played a role. Our children were abused and our rights and roles as their parents were abused but we have the absolute right to believe that our children contributed and made a difference to mankind. The sinister part of this is that we as a parents had no say and even when we had the establishment had little or no regard for it and nothing has changed to make me believe that anything is different now. Parents are still being misled and the establishment is now trying to take away their right to give consent in the proposed legislation. The proposed legislation is suggesting the use of ' authorisation' to replace consent. If we don't stop the possibilities of the concept of authorisation being enacted into law we are all doomed. Authorisation will put the responsibility on parents to show their level of understanding or distress at the time they are being asked about consent. Following which the person seeking authorisation will decide what level of information they are able to discuss. So in other words the person seeking authorisation has the right to decide what level of information to give me based on my levels of upset. Familiar!! When we ask the Professionals why they consider this to be a better option they will say that it is too distressing for a mother or father to discuss such matters in detail. We would argue that this sounds very familiar to the gauge they used in the past when the Professionals thought that we were to upset to see and hold our babies. This is really serious for all of us, not just in relation to our baby who has died but what if we had to face another tragedy in relation to one of our other children, or any other member of our family. Will they suggest that I was too upset to tell me the full details of what they want to do? What's changed!!! We have had a meeting since the Audits were published with Minister Mary Harney and very clearly stated our concerns in relation to authorisation and the proposed legislation. We will continue to make representations whenever and wherever we can to try to influence a good outcome. The National audit also highlighted issues to do with the Rotunda Hospital and a separate investigation/ audit had to be carried out. The following is a statement taken from the HSE website with regard to the Rotunda - The Carter report found a range of issues at the hospital, which included weakness in consent policy and documentation, variations between the terms of the consent given by families and the post- mortems carried out, delays in carrying out examinations and delays in implementing family instructions for respectful burial of organs or tissues. The report found that the issues at the hospital arose from individual professional practice, poor post- mortem systems and processes and weak management and governance oversight" ( taken from HSE website). The revelations contained in the Carter Report make for shocking reading in relation to the Rotunda Hospital. The hospital have known since 2007 that there was a problem with regard to post mortem practices. It is appalling that the parents affected by the current situation had to wait until the National Audit and Carter Reports were completed to be told about their babies. Personally I am devastated, I thought I had built up a good level of trust over the past 16 years communicating with Health Care Professionals in the Rotunda and the other hospitals to help develop good practice but now realise that has been a waste. There is an old saying " no where to go but on" and that is what we ( ISANDS) will have to do; but from now on we will have to take a different approach as it is clear the old way didn't work. There is still much to be done in relation to these matters, we will continue in our search for answers and work as best we can with the greater powers to find ways to protect parents and their babies in the future. Medical Staff will have to realise sooner or later that they will need to learn how to communicate everything we need to know about our baby's in relation to post mortem's if they want trust considered again. The past clearly needs more than an apology and in our view an acknowledgement in a way that is fitting to the size and extent of the hurt and damage caused should be given. Parents and families should be consulted and their views welcomed on this matter. Many parents who were affected by the 1999/ 2000 Organ Retention Scandal have got in touch again with the hospital where their baby was born following the publication of the Willis/ Carter Reports. This is to confirm that the details given to them at the time of their enquiry is now correct in light of these Reports. If you have been affected by any matters raised here or in relation to post mortem practices and would like to talk to someone, please give us a call on 01 872 6996 or email info@ isands. ie The new ISANDS Discussion Forum also hosts a thread where all of the above is being discussed by parents. Ron Smith- Murphy, National Chairperson, ISANDS isands newsletter 39