False ISANDS Guidelines for Professionals Twelve years ago ISANDS embarked on a project of compiling a book for Professionals written by Professionals. It was a daunting task as there was little or nothing to base a book of this type on. We brought together various groups of Professionals and discussed the possibilities and what direction it might take. And so it began... We decided, rather than writing a book to cover the whole are of care and bereavements under one heading that we would break it up into different sections under relevant Professionals, ie Obstetricians, Paediatricians, Midwives/ Nurses, G. Ps, Pastrol Care within the Hospital and the Community and Teachers. Originally we met with various groups of Professionals to come up with a frame work to approach this sad but diffi cult subject. In open, frank and honest discussions we were able to recognise that for the Professionals, it is extremely diffi cult to break the sad news to any parent that their baby has died or is expected to die. In ISANDS opinion, depending on how that is done can affect parents and have a bearing on how they will cope in the immediate time and afterwards. So that was the base line for this book- how do be marry those two areas - being able to communicate sad news and how that can affect everything else that happens. What helps and what makes a difference - ISANDS have 25 years of experience on this bit. From our Parent Support Group meetings and Support Team Supervision meetings we were able to piece together important reoccurring patterns that ‘ made a difference’ in a good or bad way. What needs to happen, what needs to be said, what needs to be done and HOW in all these situations. So everyone went away and wrote individual pieces on how they envisaged this would happen. Then the mammoth task of collating each section into one document was undertaken by Blanaid Morris, ISANDS. Then each section was discussed in great detail with the various groups, then after hundreds of meetings, telephone conversations, letters and emails a draft document emerged for most sections !!( others were added later). Now to be honest with time constraints for everyone involved it was hard to keep everyone motivated and interest waned from time to time. Then in late 1999 the Organ Retention Scandal hit the headlines and the charity had to invest its time into that and for the next few years, while continuing to provide our ongoing services and support. Members of the National Executive of ISANDS submitted a 300 page document to the Dunne Inquiry, met with Deirdre Madden in relation to the Madden Report and were part of the Working Group with the Department of Health. While all of that took up considerable time it was also a learning experience and helped greatly in our understanding. Then about two years ago I decided it was time to get back to the Professional Book. I re- grouped everyone and serious business was done!! It was full steam ahead regardless!! We also had to get some new people involved as some Professionals had retired or moved out of the this area of care. We also recognised new areas that needed to be included and found good people to help us with that. Areas in the book referring isands newsletter 24

False to actual practice ( not suggested best practice) and laws ie. Coroners Post Mortem, Religious and Cultural Belief, Funeral Directors, Teachers were contributed by ie. Coroner, and various Cultural Groups, Teachers etc. Matters referring to anything medical was contributed by the various Professionals in their field of expertise. Hours of conversations, typing and formatting were spent, a full document was produced before the Book went to print and sent out to over 300 Professionals and to various Schools and Colleges to include Royal College of Surgeons School of Nursing- Trinity College, School of Chaplain Clinical Pastoral Care, Archdiocese of Dublin, and St. Patrick’s Teacher Training College to name a few, for their comments, suggestions criticisms. We had almost a 100% response, which was incredible, which leads me to believe that the climate is now right for a publication such as this. In general there was great feedback and encouragement about the draft and the necessity for a publication of this sort. Our thanks to everyone who took the time to read through the draft and make useful and insightful comments. Adjustments were made to incorporate the suggestions where appropriate and necessary. It was beginning to take shape!! Now a few photos - we had the image for the cover, which says it all. Given to us some years ago by Kate Horgan a professional photographer to be used for a special project, well we saved it for the best impact it could have. It is a truly beautiful photograph of Kate holding her daughter Romy’s foot. It really say’s it all in a moment of time. Thank you to Kate for sharing her daughter with us and allowing us to use this incredible image to case this work. The book also includes other beautiful and meaningful photographs and images. The photographs were all set up and taken by Olive Ann Smith. They say what they need to say in a very sensitive way and our thanks to Olive Ann for seeing what we needed her to see so that she could make them happen, our thanks also to all the models! Visually this is a beautiful book and it makes a difficult subject ‘ user friendly’ and that is what we need it to be if it is to be effective. My thanks to Michael McGarry in Vision Print for his valuable advise in producing this quality publication and Dermot O’Connor for his expertise in the formatting and production of the Book. This book breaks new ground in all areas. There are no other publications which have been written in this manner anywhere. This publication came about because the climate was right and it being the right time for everyone to be open about this topic. We are eternally grateful to all the Professionals and others that were interested in being part of this publication. It was an incredible journey of searching and finding. Thank you for your willingness to share your experience, expertise, insight with us in a very honest, frank and compassionate way. Time will tell if it makes a difference and I believe it will, what we need to remember is that we need to see this publication as a ‘ work in progress’. In time more changes will come about or new ways of looking at this whole are of care will happen and this book, we hope will move with those changes. Thank you to all the parents and families who were also part of this publication. You and your children’s short lives continues to make a difference. For me it has created yet another bookmark in my life and my journey. I am so very proud of my part and role in it and very grateful to have brought the project to fruition. Ron Smith- Murphy National Chairperson, ISANDS Very Rev. Desmond Harman It was with the great sadness I learned of the death of the Very Rev. Desmond Harman, Dean of Christ Church Cathedral, who attended the Launch of the Guidelines of Professionals and died suddenly just before Christmas. We express our deepest sympathy to Dean Harman’s wife, Sue and his family. The news of Dean Harman’s sudden passing has caused great sadness throughout the Church of Ireland. We offer our condolences to the The Archbishop of Dublin, the Very Rev. John Neil and the extended Church of Ireland community. Ron Smith- Murphy isands newsletter 25