Issue 17    BOARD OF DIRECTORS                                                     LETTER FROM                          Ma...
NEWS & EVENTS                                 INTERNATIONAL EVENTS CALENDAR: FEBRUARY - APRIL 2012 More information and co...
NEWS  EVENTS FROM AROUND THE GLOBE                                                                         The Children an...
FEATURE ARTICLESFOCUS ON PARTNERSHIPSLessons learned from a partnership (twinning) between twochildren’s hospice services:...
FEATURE ARTICLESFOCUS ON PARTNERSHIPS cont. had only amounted to 13 per cent.”            Children’s Hospice service we   ...
FEATURE ARTICLESAfter Death Care in the Hospital, Home, and Hospice  About the Author:                                    ...
FEATURE ARTICLES     amazing piece of equipment.”                         will soon be standard practice to let each      ...
FEATURE ARTICLE  Report back on the 2nd Pan-Hellenic Pediatric       Palliative Care Symposium in AthensTThe 2nd Pan-Helle...
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International Children’s Palliative Care Network Icpcn newsletter march 2012


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Children and young people with life-limiting or life-threatening conditions have very specific and unique palliative care needs, often different to those of adults. The International Children’s Palliative Care Network (ICPCN) shares a vision that these total needs should be met to encompass physical, emotional, spiritual and developmental aspects of care.

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International Children’s Palliative Care Network Icpcn newsletter march 2012

  1. 1. Issue 17 BOARD OF DIRECTORS LETTER FROM March 2012 Joan Marston - Chief ExecutiveInternational Children’s Palliative Care Network THE CHIEF EXECUTIVE Lizzie Chambers - Co Chair Deputy Chief Executive Together for Short Lives, UK Dear Friends difference to children and Barbara Gelb - Co Chair Spending time with staff in developing Chief Executive Together for Short Lives, UK programmes providing hospice programmes. palliative care to children Through the ICPCN Partnership Sabine Kraft - Vice Chair in Africa and India this year, I have been initiative, I encourage members of Director National Children’s Hospice Association, Germany deeply affected by the children we have the ICPCN to consider providing met, many living in abject poverty, moving advice and encouragement to your Richard Carling - Treasurer Finance Officer from family to family, undernourished and colleagues in developing countries, Together for Short Lives, UK disabled, and often unable to visit health who share our vision to relieve care centres because of lack of funds to pay suffering and improve quality of life. Sharon Baxter Executive Director for transport. 2. We can become advocates for Canadian Hospice Palliative Care Association the relief of pain and suffering There are many challenges to providing in children. By widely distributing Dr Delia Birtar (MD) Paediatric Project Coordinator palliative care, even in well-resourced the new WHO Pharmacological Hospice Casa Sperantei, Brasov, Romania countries, but when children live in poverty, Guidelines for Persisting Pain in those challenges are magnified. The Children with Medical Illnesses, Dr Hanneke Brits Principal Specialist palliative care community is rightly fighting and encouraging health care Department of Family Medicine University of the Free State, South Africa for improved access to pain medication, professionals to complete the especially opioids, but to this we need to add e-learning module on pain Dr Ross Drake (MD) strong advocacy for nourishing food for the assessment and management, weClinical Director - PPC & Complex Pain Services Starship Children’s Hospital, Aukland, NZ children we care for; funding for transport so can all help to increase the number that families can take their children to clinics of children receiving effective pain Dr Sue Fowler Kerry (PhD) and hospitals; improved access to therapies relief. Chair - Education & Research, ICPCN Professor, College of Nursing to relieve disabilities, and expanded 3. We can listen to the voices of University of Saskatchewan, Canada training opportunities for professionals and children and their families when community health workers. developing new programmes to Dr Anna Garchakova (PhD) Director meet their - and not our - needs. Belarussian Children’s Hospice, Belarus So how can we help? Funding is Dr Rut Kiman (MD) wonderful but at the end of the day, it is And in the words of Patch Adams we Chief of Paediatric Palliative Care people who bring about change. can: “Share the compassion. Let that be Professor A. Posadas Hospital, Argentina contagious.” Fatia Kiyange 1. We can share our experience and Director of Programmes expertise. Just as the partnership between Joan African Palliative Care Association Belarus Children’s Hospice and Richard Dr Maryann Muckaden (MD) House in London have shown, established Medical Professor Radiation Oncology Tata Memorial Hospital, India children’s hospice and palliative care programmes could make a very real Welcome to Busi Nkosi - ICPCN Advocacy Officer and newest staff member W We are pleased to introduce to you the newest member of the growing ICPCN while in this position included caring for children living with HIV & AIDS and other life limiting illnesses, the development of annual health activity plans, monitoring and evaluation, Palliative Care Association of South Africa in the Gauteng Province, has mentored hospices in Gauteng to strengthen their Paediatric Palliative Care Programmes, and is a clinical staff. Mrs Busisiwe conducting research and the development instructor and trainer for health professionals (Busi) Nkosi is a of programmes to meet the changing health doing the HPCA Paediatric Palliative Care nurse who has needs of the children and their families and the Short Course in the Gauteng region. She has been involved in the training of staff and community members in also presented a number of papers at both field of paediatric health issues. She was a member of the team national and international conferences. palliative care since that developed Palliative Care Guidelines her appointment to for children living with HIV and AIDS for the We are sure you join us in welcoming Busi Cotlands Children’s Hospice in Soweto as the South African Department of Health in 2001, onto the ICPCN staff and we look forward to National Health Manager. Her responsibilities was a consultant advocacy officer for Hospice hearing great things from her in the future. 1 1 ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172)
  2. 2. NEWS & EVENTS INTERNATIONAL EVENTS CALENDAR: FEBRUARY - APRIL 2012 More information and contact details for all these conferences, courses and events can be found on our website. Go to March 14 Saying ‘No’ workshop Derian House Children’s Hospice, UK 14 - 16 9th Palliative Care Congress Gateshead, United Kingdom 14 - 17 VI Latin American Congress for Palliative Care ExpoUnimed Curitiba, Brazil 18 - 19 Paediatric Palliative Care Masterclass Säo Paulo, Brazil (Events) 21 - 23 SIOP Congress 2012 Celebrating African Excellence Cape Town, South Africa 26 When a baby or child dies - Supporting Families Perth, Australia 11 Workshop: Working with bereavement Derian House Children’s Hospice, UK 12 - 13 Historical Conference - The first on Paediatric Palliative Care Kristiansand, Norway 17 - 21 Kenya Paediatric Association Annual Scientific Conference Mombassaa, Kenya 18 Sibling Suport Derian House Children’s Hospice, UK 19 Grief and Bereavement in Early Years setting Buckinghamshire, UK 19 - 20 Current Issues in Palliative Care - 7th National Conference London, UK 21 - 1/5 Pediatric Academic Societies Annual Meeting (PAS 2012) Hynes Convention Center, Boston, USA May 05 - 11 International Multi-Professional Paediatric Palliative Care Course Haltern, Germany 14 Promoting Choice for End of Life Care for Young Adults (16 - 25 years) Chorley, Lancs, UK 16 Building a balanced personal/Work Lifestyle Derian House Children’s Hospice, UK 17 - 18 ‘Touching Rainbows’ Children’s Hospice congress Budapest, Hungary 17 - 20 The 2nd Global Congress for Consensus in Pediatrics and Child Health Moscow, Russia June 05 - 11 7th World Research Congress of the EAPC Trondheim, Norway 12 - 15 3rd South African TB Conference Durban, South Africa ICPCN Paediatric Palliative Care Multi-Professional Masterclass 6th International Cardiff Conference Improving children’s quality of life on Paediatric Palliative Care through Paediatric Palliative Care The ICPCN is thrilled to be partnering once again19 - 20 March Sao Paulo, Brazil wtih Cardiff University and Dr Richard Hain for the 6th International Cardiff Conference on PaediatricTopics to be covered include: Palliative Care. Types Of Interventions: Oncological and Non-Oncological Conference Venue Diseases The conference will be held at Cardiff University, Main Building. Paediatric Palliative Care In Newborns The conference will commence on Wednesday 11th July and end Paediatric Palliative Care In Cancer Friday 13th July 2012. The venue is a short walk from the city Paediatric Palliative Care In HIV/AIDS centre and hotels. There is a train station opposite the building Paediatric Palliative Care In Neurological Diseases and a frequent bus service from the city centre which stops How to Comunicate Bad News outside the building. Symptom Control Pain: Definitions; Total Pain For more information Who Analgesic Ladder You are welcome to contact the conference management team on: Non- Pharmacological Methods Phone: +44 (0) 29 2087 5508 Complementary and Alternative Treatment Email: Drugs And Routes of Administration Website: Opioids Initial Dose, Rescue, Presentation Concept of Agonist - Antagonist. Different Routes Of Administration Psychosocial Aspects: Family And Siblings Spring Conference 2012 Spirituality rical Ethical Considerations in Paediatric Palliative Care Histo Kristiansand, Norway 12 - 13 April The very first Paediatric Palliative Care Conference to be held in Norway ICPCN is a registered charity in England Wales (number 1143712) and a registered company in England Wales (number 7675172)
  3. 3. NEWS EVENTS FROM AROUND THE GLOBE The Children and HIV: Closing the Gap - Ending Vertical Transmission through Community Action international symposium will be held at the Georgetown University Hotel and Conference Centre in Washington D.C. on July 20th and 21st, 2012. This two-day symposium, jointly hosted by The Teresa Group, the Coalition on Children Affected by AIDS (CCABA), and the Global Fund for Children will once again bring together hundreds of service providers, researchers, donors, advocates and policy leaders from around the world , presenting on the topic of ending vertical transmission through community-based efforts. Abstract submission extended to 18 March 2012. Scholarships available. Find out more at: New PublicationsNew WHO guidelines on the pharmacological treatment of persistingpain in children with medical illnesses are now available for download This package consists of four To download go to: publications and four tools. These The pain scales, as they were not uk/page.asp?section=0001000100 are: part of the evidence evaluation, 33sectionTitle=Resources WHO guidelines on the are not part of the guidelines, pharmacological treatment of but are provided to facilitate pain persisting pain in children with assessment in children. WHO did medical illnesses not assess the evidence behind Three brochures with important the pain scales in full. We refer to information for the guidelines for more information. • physicians and nurses The wall chart is intended to WHO • pharmacists promote familiarity with pain control guidelines on • policy-makers and medicines among the general public, and more the pharmacological regulatory authorities; particularly among caregivers, who hospital managers and health should be encouraged to ask for treatment of persisting insurance managers pain management for the child. pain in children with Dosing card Wall chart for waiting rooms The WHO advise that the brochures medical illnesses be shared with as many relevant The brochures provide important colleagues as possible. However, background information on the they are not a substitute for the more treatment of pain in children detailed information contained in that can be helpful for ensuring the guidelines document. Health- adequate access to pain treatment. care professionals should read the The dosing card provides brief guidelines document if possible. information on the dosing of the substances described in the guidelines. Dr. Caprice Knapp, Dr. Sue Fowler-Kerry, Don’t forget to order your copy of and Mrs. Vanessa Madden are proud to Touching Rainbows by emailing announce the publication of their book Barbara at Pediatric Palliative Care: Global Perspectives. This book describes pediatric palliative care in 23 countries around the world. Chapter authors describe characteristics of children with life-limiting illnesses, services available, organization of care at the local and national levels, relevant legislation, and pioneers in the field. This book is the first to offer a systematic approach to understanding pediatric palliative care as it is delivered around the world. Available from Springer ISBN 978-94-007-2569-0 3 ICPCN is a registered charity in England Wales (number 1143712) and a registered company in England Wales (number 7675172)
  4. 4. FEATURE ARTICLESFOCUS ON PARTNERSHIPSLessons learned from a partnership (twinning) between twochildren’s hospice services: The Belarusian Children’s Hospice Service(Minsk, Belarus) and Richard House Children’s Hospice (London, England) Written by: Anna Garchakova, of hospices shows us that this set learning objectives. A key factor in Director, The Belarusian Children’s cooperation often turns into a one-way the success of the visit is to ensure that Hospice Service and Peter Ellis, process, when one of the parties tries an interpreter/advocate is available. Chief Executive, Richard House to benefit from its partner while having We are also especially grateful to the Children’s Hospice nothing to give back. Victor Zorza Trust, who funded two of the exchange visits. A Anna Garchakova and Peter Ellis first Despite the differences between met in early 2005, at a conference the organisations as well as our Following these various visits, Anna in Edinburgh. They were introduced individual circumstances we were and Peter reflected on the learning by Anthea Hare, the founder and life nevertheless able to monitor and find they had gained. While there had president of Richard House Children’s our commonalities. been some benefits, especially for Hospice. Anthea had already made a the newly appointed BCH fundraisers, personal commitment to development In time we have realised that the we agreed that there could be more of children’s palliative care in Eastern most important issue for us was impact and that there could be a more Europe. that of an exchange of knowledge. strategic approach. Peter was already Naturally England has a longstanding discussing with Anna questions about Anna was very keen that a partnership background within the children’s how to develop the service in Belarus, should be established, and due to her hospice movement and we did what thinking about the future and how to persistence, Peter arranged to visit the was possible to adopt their model, plan for this. Belarusian Children’s Hospice Service while also adapting this knowledge in the country’s capital Minsk in May to the socio-economic climate and Peter subsequently became a member 2005. conditions of Belarus.” of the newly formed BCH advisory Following the visit, Anna and Peter council. Peter also held workshops for agreed that a Twinning Agreement senior staff at the Hospice in strategic should be drawn up to formalise the and business planning. working relationship and help manage expectations for both parties involved. Anna says: “Peter Ellis has taken a The agreement was signed in 2006, lead within the Advisory Council since using a format recommended by Help 2011. His role has involved assisting us the Hospices, the umbrella body for to reach stability and self-sufficiency. hospices in the United Kingdom. A well known proverb says: ‘You may give a hungry man fish to eat or you can give him a fishing rod and teach The Belarusian Children’s Hospice Richard House in London him to fish…‘ Well, that is exactly what we have been given – a fishing rod! An important additional factor was that Peter Ellis did the structuring of the Peter linked up with the Friends of organization, held a series of training the Belarusian Children’s Hospice sessions and undertook a process of Service, and in particular, Daryl Ann monitoring.” Hardman, the Chair of this UK based charity. The Friends involves a small The Belarusian Hospice Service had group of people who support, both been reliant on the majority of their financially and in an advisory capacity, income from abroad, a significant the Belarusian Children’s Hospice proportion arising from the efforts Service. of the Friends of the Belarusian To start their twinning arrangement, Children’s Hospice, who raised the Anna and Peter agreed to set up Peter has now established a positive majority of the staff salaries budget. In exchange visits of staff, initially care working relationship with Daryl Ann recent years, the Hospice developed staff, between the two hospices. They and whenever he travels to Belarus he its own fundraising function. also agreed to exchange information goes with Daryl Ann. that might be helpful between the two Anna explains: “The development of hospice services. Exchange visits a fundraising stream was extremely Since the arrangement began, six important for us. We now have two Anna explained the benefits of the visits have taken place. Five of these fundraisers, and they have visited arrangement: “The essence of the visits have seen BCH care (nurses Richard House for some experience partnership itself is interaction with and social worker) and fundraising and tuition. The results have not been common goals and interests and the staff visiting Richard House. One visit long in coming. Now, up to 55 per cent exchange of experience. saw a nurse from Richard House travel of the financial support we receive has to Belarus. Visits have lasted between been provided by the sponsors from However the history of partnerships one and two weeks. Each visit has had the Republic of Belarus. Before this it 4 ICPCN is a registered charity in England Wales (number 1143712) and a registered company in England Wales (number 7675172)
  5. 5. FEATURE ARTICLESFOCUS ON PARTNERSHIPS cont. had only amounted to 13 per cent.” Children’s Hospice service we and respect for each other, and there hope will have a longer lasting has to be good working relationships Reflections effect for their sustainability and in order for the partnership to be Since starting on this journey of resilience. sustainable. twinning, there have been a number of Culture and language learning outcomes: differences play a significant Anna and Peter recommend twinning, part in determining the success although it comes at a cost. A shared learning about of the twinning arrangement. children’s palliative care, Unless these are positively Peter Ellis using the opportunity to reflect on handled, it can cause difficulties, Chief Executive this across cultures considering promote misunderstanding and Richard House Children’s Hospice the similarities and differences. create boundaries. Children’s palliative care continues Time and commitment is a factor to evolve and develop in approach that must be considered. There is Anna Garchakova across the world, and it is vital inevitably a level of commitment Director that we share this learning from that needs to be given to ensure The Belarusian Children’s Hospice perspectives outside of our own that the twinning continues and Service individual cultures and traditions. A achieves positive outcomes. It good example of this is the different does take additional time and effort philosophies of care. The care of on the part of all those involved. children with disabilities varies considerably between countries. Both partners have been positively In the UK, the child remains with involved in some of the wider the family where at all possible. developments for children’s palliative In Belarus, this is different, and care in Eastern Europe. often children are looked after by the State. However, this is Anna comments: “The Belarusian changing and there are a number of Children’s Hospice functions as an organisations supporting Belarus in independent and self-contained their approach. organisation nowadays. We are The philosophy and attitude planning to start building a new in dealing with loss and grief hospice (with eight wards) and now and with death and dying varies we are actively engaged in fundraising between the two countries. Again, for this purpose. In October 2011 we this is something we are aware of, held the fifth International Conference but as yet we have not discussed Palliative care for children in Eastern at length to consider the two Europe. The Conference turned out approaches. to be far larger than we thought with Peter Ellis The recognition that greater presenters from 136 countries taking impact in the longer term can part including: Belarus, Russia, Ukraine, Why not consider partnering be achieved by working on the Poland, Lithuania, Latvia, Tajikistan, with another children’s hospice strategic aims and objectives Hungary, Italy, Switzerland, the USA, and programme? of service development. The South Africa. support offered to the Belarusian “We also plan to organise an Association of Paediatric Palliative care in the Commonwealth of Independent States (CIS) countries in the near future. In the course of this Association we intend to support the development of palliative care in the CIS countries.” In conclusion The twinning of two hospices from different countries is a real commitment and takes time to develop if it is to have some real impact. Inevitably, the relationship The ICPCN Guide to Children’s Anna Garchakova and Maksim Padbiarozkin stand has to be based on trust Hospice Palliative Care Part- on the land on which a new children’s hospice will be built in Minsk. nerships can be downloaded from the website at: 5
  6. 6. FEATURE ARTICLESAfter Death Care in the Hospital, Home, and Hospice About the Author: systems in collaboration with Simon Rothwell LL.B (Hons) MBA is an ex Police Officer (British) who often had to deal hospitals, hospices, and those with bereavement issues. He is now the Director of Flexmort Ltd, an organisation which is dealing with bereavement. Flexmort part of a Warwick University Science Park programme specialising in the development and received assistance with testing from manufacture of portable body storage systems for hospices, hospitals, and funeral homes. the Thiel Cadaver Facility at the Centre for Anatomy and Human Identification, In Practice College of Life Sciences, University of In practice, after-death care in the home Dundee. The cooling systems have allowed is the standard of care in Australia and numerous UK hospitals, hospices, and New Zealand but within Europe and the funeral homes to provide families with that US changes have been slower although option of spending time with their deceased progress is being made. Within the UK, there have been considerable developments recently not only due to the work of organisations such as SANDS, but also due to smaller charities such as Towards Tomorrow Grieving - Should We Impose Separation which actively advocate for or Provide Families with Options? parents’ rights to spend time R Rick Santorum (a U.S. Republican with their babies. Furthermore, Presidential Candidate) and his wife in the UK’s NHS hospitals, there suffered the death of a baby in 1995 and are now an increasing number decided to take their baby home before of bereavement specialists who burial. This was exposed by the U.S. media are driving the change and recently, and the family was subjected to encouraging families to spend considerable criticism. Many comments time with the deceased (whether were not only nasty, but also completely babies or children) not only in ignorant of current thinking. As pointed the hospital, but also at home. loved ones in a hospital, hospice, or home out by U.S. bereavement specialists such environment without the need for traditional as Amy Kuebelbeck, spending time with a The Problems cold rooms or mortuary refrigeration. body after death is normal and healthy, and However, the problem is that bodies, These cold blanket systems have now giving families the opportunity and support particularly babies’ bodies, deteriorate if been recognised in the 2011 NHS hospital to do so if they wish is now the evidence- they are not chilled and up until recently Guidance for Staff Responsible for Care based medical standard of care. the only option has been the use of cold After Death developed by the National rooms or mortuary refrigerators which End of Life Care Programme and National Families are encouraged and supported in do not provide an appropriate grieving Nurse Consultant Group (Palliative Care). their desire to spend the time they require with environment and are obviously not Practitioners’ experiences have been very a deceased loved one, whether at home, or portable. In the UK, new portable cooling positive with numerous systems now in use in a hospice or hospital environment. When systems (Flexmort’s Covercool range throughout the UK. a baby dies, parents report that keeping have been developed their deceased baby with them from death allowing deceased children/adults to be Feedback from the Professionals until burial or cremation can be extremely cooled at home in a bed and babies to be Tracie Dempster, Head of Care at chYps (a therapeutic, counter to the trauma of hasty kept cool in a moses basket or crib. These UK Children and Young Person’s hospice) separation by sending the baby off to a cold systems have provided significant benefits says the Cold Cot system (for cooling mortuary or into the care of strangers at a to UK hospices and hospitals by improving deceased babies) is “simply fantastic and funeral home. There are numerous sources the standard of care afforded to those exceeded all our expectations. It preserved which make this clear including the position suffering bereavement. the body so well that the family were able to statement from an international collaboration keep their daughter at home for the whole of parent advocacy groups (with 20 seven days before the funeral... I can see international contributors representing 17 benefits for Flexmort’s cooling systems for organisations), as well as recommendations Hospice Care at home for all families.” from the American Pregnancy Association and from bereavement care experts. Christine Forster, Service Manager at For example, Deborah L. Davis, PhD, a Naomi House Jacksplace (hospices developmental psychologist and author of for children and young adults) points out, several books, has included this concept in “There is no doubt that the use of the several publications including her chapter on system helped the parents cope with the “Perinatal Death and Bereavement Care,” bereavement.” written for the 2010 edition of The Manual of High Risk Pregnancy Delivery (Mosby/ The Matron of Maternity at Queen’s Elsevier) and in her book about perinatal Hospital told The Burton Mail (UK) in Oct hospice, A Gift of Time (Johns Hopkins Developments in Technology 2011, “We’re proud to be one of the first University Press, 2011). Flexmort has developed its cooling hospitals in the country to have one...An 6 ICPCN is a registered charity in England Wales (number 1143712) and a registered company in England Wales (number 7675172)
  7. 7. FEATURE ARTICLES amazing piece of equipment.” will soon be standard practice to let each care, rather than forcing parents to parent set the pace for spending time with relinquish their infant before they How Do The Covercool Machines Work? their infant, to normalize bringing baby are ready (which may not be until burial or The Covercool systems cool the deceased home, and to restore traditional after-death cremation, in many cases.)” To effectively by using a small cooling machine which do this, portable cooling systems are circulates cold water through a thin water- required and new UK developments from filled pad, which is placed in contact with Flexmort have allowed organisations to the body (either above or below), resulting overcome this technological hurdle. in fast cooling as heat is quickly removed from the body. The systems are all portable By Simon Rothwell and range from the “Cold Cot,” a small Director, Flexmort Ltd. baby cooling unit, to larger systems that Find out more by emailing Simon: can cool adult sized pads. or visit the website at: The concept of providing bereaved families with options is key. Dr. Davis, hopes, “It Hospice “Villa de la Esperanza” reopens with help from Grünenthal and the ICPCN L Last year the ICPCN was privileged to be in the position to channel funding from Grünenthal to two very worthy children’s palliative care organisations in Malwai and Guatemala in order to strengthen the delivery of care to the children within their programmes. One of these was the Hospice ‘Villa de la Esperanza’ in Guatemala which had suffered a number of setbacks as a result of earthquakes and flooding. The hospice was able to purchase“ vital medical equipment with the money donated.Dear friendsWe want to thank you on behalf of Fundacion AmmarAyudando and all the children in Guatemala that willbenefit from your generous donation. Thank you verymuch for the funds that will help us buy the necessarymedical equipment for the hospice.It has been a challenge for all of us, members ofFundacion Ammar Ayundando to make Hospice “Villade la Esperanza” a reality. There is a lot to do in ourcountry, but we have finally openened our doors tooffer all terminally ill children ages 0 - 21 and theirfamilies the pallliative care they need. Thanks forhelping us in the challenging but rewarding task;without your help our dream would have not cometrue.Enclosed is a picture of Sayda, a 14 year old girl whois a patient at our hospice who drew this picture to “thank you for your help. If you ever consider visitingGuatemala, please stop by to visit the Hospice.Once again, thank you from the bottom of our hearts.SincerelyMyriam de AceitunoPresidentFundacion Ammar Ayundando 7 ICPCN is a registered charity in England Wales (number 1143712) and a registered company in England Wales (number 7675172)
  8. 8. FEATURE ARTICLE Report back on the 2nd Pan-Hellenic Pediatric Palliative Care Symposium in AthensTThe 2nd Pan-Hellenic PediatricPalliative Care Symposium tookplace in Athens, on December 2011.The symposium was organized Illness and Death (www.merimna. The urgent need to develop audience as it presented bereaved families’ experiences of the care they received throughout their child’s illness, including end-of life the Greek Society for Pediatric pediatric palliative care servicesPalliative Care ( in Greece was underlined while During the final session, theand the non-profit organization the Care Team of the first Pediatric experience of educational programsMerimna - Society for the Care Palliative Home Care Service in in pediatric palliative care in Greeceof Children and Families Facing Greece presented its work during was extensively discussed. Greece the first two years of has a long experience in providing its operation. pediatric palliative care education The key note speaker which dates since 1992. The need for was Dr Ann Goldman, joint collaboration between different a world leader in the services and health care settings was field, who presented emphasized as being an essential the challenges and component for the successful opportunities in designing development of pediatric palliative and also implementing care services in this country. palliative care services for children and their Maria Bouri families. Paediatrician Secretary of the A documentary film, Greek Society for PediatricThe Care Team of Merimna’s Pediatric Palliative Care Home produced by Merimna, Palliative CareCare Service presenting their work motivated the Pathways through lossTThis documentary, produced by Merimna - a non profitorganisation that specialises in childhood bereavementsupport (, refers toPathwroad-trafficLoss a ays throughaccident that happened in central Greece during a school Pathways through Loss A documentary on community trauma, grieexcursion, which caused the death of 7 teenagers. The filmfilm by Dana Papadatou Michalis A f and growthdescribes the collaboration of Merimna with iWith small tion ofGalanakis a the participaruralcommunity of Greece over a period of 3 years. from Farkadona’s students and educators Lyceum Scientific Editor: Danai Papa PathwaysThe documentary was created for public atogrNarrator: Alexandros Mylonas awareness datou Cinemand has an educational goal: to sensitize viewers CostiMichthe satos aphy: to Papanasta akis Editing: s alis Galan through Losschallenges that schools encounter after a traumaticSound: Takis Kororos event Graphics: George Rakkosor disaster, and to highlight the significance of psychosocialinterventions, which seek to address the immediate, short-term, and long-term needs of the members of a traumatized on community trauma, grief mentary and growthcommunity. A docuCopies (duration 50 min - English subtitles) are availablenow, to be used for educational purposes along with a Productionset of questions for discussion with professionals’ and/or Color World Salesstudents. To obtain the documentary, Merimna asks for a Duration: 64’ BETA DIGITALdonation (minimum 40 Euros), as its work with dying andbereaved children and adolescents and their families,which is the only one of its kind SocietyGreece, enreliesFacing Illness and Death in for the Care of Childr and Families entirely |on donations. | | Society for the Care of Childr en and Families Facing Illness and DeathPlease email to order a copy. Should you wish to contribute to ICPCN acknowledges with gratitude the ICPCN is a registered charity in England or advertise in ICPCN Network funding received from The True Colours Wales (number 1143712) and a registered News please contact the Editor, Trust for the furtherance of its work in company in England Wales (number 7675172) Sue Boucher promoting the development of paediatric Email: palliative care worldwide. Registered as a Co in SA: 2011/001648/08 Cell: +27(0)82 897 4420