Inside. September 2015 Issue 46. Information for hospitals served by NHS Blood and Transplant

Transcription

1 September 2015 Issue 46 Information for hospitals served by NHS Blood and Transplant Inside UK s First ECMO Patient Led Support Group Launched at University Hospital of South Manchester 4 A Regional Approach to Improving Consent to Blood Transfusion: The ICAG Pad 6 National Survey on the Use of O RhD Negative Blood 8 The Man with the Golden Blood 11 Meet the Donors, Patients, Doctors and Scientists Involved in the Complex Global Network of Rare and Very Rare Blood 12 Non-Invasive Fetal RHD Screening Service 13 Non-inherited Maternal Antigens (NIMA) as Permissible HLA Mismatches In Cord Blood Transplantation 15 Top Tips for Running Deceased Organ Donation Simulation Courses 18 Managing the Risk, the Making of The Human Tissue Squad 22 Deconstructing Donation Study Group Conference Monday 27th June 2016, Lancaster University 24 CPD Questions 25 Clinical Case Studies 27 Dates for Scientific and Clinical Courses 31 Diary Dates 32

2 Editorial Board: Rob Webster Consultant Haematologist, (Editor) NHSBT, Sheffield Lynne Hodkin Medical Secretary/PA, (Editorial Assistant) NHSBT, Sheffield Denise Watson Regional Lead: Patient Blood Management Team NHSBT, Newcastle James Neuberger Associate Medical Director Organ Donation and Transplantation, Bristol Penny Richardson Media and PR Manager NHSBT, Liverpool John Girdlestone Head of Laboratory Stem Cells and Immunotherapies NHSBT, Colindale Paul Rooney R&D Manager, NHSBT Tissue Services NHSBT, Liverpool Please let us know if the mailing address for your copy of Blood and Transplant Matters is not correct contact: Next Edition Issue 47 will feature articles on: Donor Referrals, Why, What Reasons Eye Banking Stem Cells and Immunotherapies. If you would like to comment on any of the articles in this edition of Blood and Transplant Matters please the Editor: < 2 Blood and Transplant Matters September 2015

3 EDITORIAL Welcome to the latest Blood and Transplant Matters, I hope you enjoyed the last edition. I am writing this, while thinking about summer travels. However, no one thinks about having to travel for specialised treatment. Unfortunately, some patients need complex care only available in specialised units. It is very rewarding, to realise that work that may be routine to the team, can have such positive response for individual patients a reminder that our work is well worthwhile. Our first article provides the patient and relative s view of Extracorporeal Membrane Oxygenation (ECMO) and describes the support that is now available to such families. The next article continues with the patient and outlines a successful method of obtaining meaningful patient consent for a blood transfusion, which improves patient knowledge and also improved transfusion practice. The third article describes the results of a National Survey on the use of RhD Negative Blood and makes a number of recommendations. However, the survey did also demonstrate that the majority of hospitals are following the recommendation from previous National Audits but more time is needed to fully embed into practice. The final article goes behind the scenes of decisions to allow a film crew to follow Deceased Donor Tissue Retrieval Team and donor family conversations. I hope you all saw the seriousness, or at least, were aware of the very positive reaction to the programmes. As always, there are both CPD questions with answers appearing in the next edition and interesting cases complete with outlines and suggested answers, which I hope are both interesting and informative. Have a happy read. Any comments should be sent to myself or my hard working Editorial Assistant Lynne Hodkin at blood&transplantmatters@nhsbt.nhs.uk. Rob Webster Consultant Haematologist, (Editor) NHSBT, Sheffield robert.webster@nhsbt.nhs.uk The fourth and fifth articles changes focus to the donor. These articles describe, not only how important donors are, but in certain circumstances, are very important individuals, who volunteer to provide an exceptional Service to help others. Also, the complexities involved on how providing appropriate blood, can be on some occasions. The sixth article outlines the background behind a new service provision, that will potentially reduce the use of the human plasma product anti-d Immunoglobulin in pregnancy, by giving it only to pregnant women who need it. The next article delves into the realm of Cord Blood Transplants and outlines the science behind permissible HLA mis-matches, using Non-Inherited Maternal Antigens which will increase the number of potentially useful Cord Transplants. The eighth article describes how to run successful Deceased Organ Donation Simulation Courses, which allows staff training and development in a safe environment, while enacting realtime events. All of which, leads to better and more organs for transplantation. Blood and Transplant Matters September >

4 UK s First ECMO Patient Led Support Group Launched at University Hospital of South Manchester In every difficult situation is potential value. Believe this, then begin looking for it (Norman Vincent Peale) In 2012 superfit dad of two boys, Sam Roden aged 44, became critically ill with eosinophilic pneumonia. Forty eight hours after presenting at Accident and Emergency (A&E) he was deteriorating rapidly on a ventilator and, his life was saved by being transferred to the University Hospital of South Manchester NHS Foundation Trust (UHSM) Cardio Thoracic Critical Care Unit (CTCCU), where he commenced Extracorporeal Membrane Oxygenation (ECMO) treatment. Since then Sam and his wife, Sarah have recruited over 500 new blood donors through their Pledge a Pint initiative and, in partnership with the ECMO team, started the UK s first ECMO patient support group, ECMO Family Support. The Patient Sam s Story I have always been a very fit and active person I exercise most days, compete in triathlons and had run the Chester Marathon in 3 hours 13 minutes, a few months before I became ill. I felt generally unwell for a few days, with blocked sinuses and symptoms of a cold but continued at work. On Friday evening, I started to feel short of breath so went to a Walk-in Centre on Saturday morning and was given antibiotics. My breathing got worse, so I went back to the doctors on Monday and Tuesday and was given inhalers. By Thursday, I was really struggling so went back to the doctors again and then to A&E. Photograph of Sam Roden on Extracorporeal Membrane Oxygenation. I arrived at A&E and was rapidly transferred to the Intensive Care Unit (ICU) where I was put on a Continuous Positive Airway Pressure (CPAP) mask. The following day, I agreed that I should go onto a ventilator I was exhausted, having not slept for three nights, my blood oxygen level was low and breathing was very difficult. That is really the last thing I can remember as from then on I was unconscious. The Relative Sarah s Story Seeing Sam, who is an extremely fit, healthy and vibrant person, go from being at home with me and the two boys on Thursday, to being in organ failure and on the edge of survival on Saturday, was terrifying. I had stayed up with Sam all night whilst he was on the CPAP mask on Friday and the staff allowed me to stay for the intubation, which was not straightforward as Sam was quite swollen. Sam seemed to deteriorate very quickly on Saturday. I had gone home for three hours to make tea for the boys, who were six and one at the time, and do bath and bedtime with them. I was trying to keep things a bit normal at home. I was called by an ICU consultant to go back in as Sam was going downhill. When I arrived at ICU there were a lot of staff in Sam s room. The consultant took me to one side and said that without ECMO Sam was unlikely to survive the night. I was so very grateful to have ECMO at UHSM, as even the move to CTCCU felt incredibly fraught a transfer to another hospital would have been horrific. The staff were amazing, holding my hand, letting me cry and when I finally had to leave Sam at the Catheter Laboratory doors I knew that he could not be in safer hands. The care and professionalism was the National Health Service (NHS) and humanity at its absolute best. The care which Sam had on CTCCU and, eventually on ICU was outstanding in all ways and the care and concern which was shown for me and the family was also amazing. The team were always open and honest and supported me to bring six year old Jacob and later our baby, Joseph, to see Sam on ICU. However, in the months that followed I struggled to come to terms with what had happened to us the images of what I had seen kept swimming around in my mind and the fear that Sam might become ill again was horrific. I had been in survival mode for five weeks whilst Sam was in hospital but, even now he was home, I still felt as if I was constantly in a fog of exhaustion and fear. I was able to put on a professional face and go to work, but at home I could not make decisions and was tearful and irritable. This was a very difficult time but with the help of a counsellor, friends and family I did eventually begin to feel better. < 4 Blood and Transplant Matters September 2015

5 Back Together The ECMO Survivors Story Photograph of Sam Roden Wilmslow Transition. As our ECMO experience became more distant and we were emotionally stronger, Sam and I were determined to use what had happened to us to make things better for the next patients and relatives. We had great support from the staff at UHSM, and our amazing family and friends, but we would have loved to talk to someone who had actually been the person by the bedside or in the bed, like we had been. We wanted to share the things that had helped us along our journey and decided to act by setting up ECMO Family Support. The UHSM ECMO service is one of only five adult centres in the country and takes patients from a wide geographical area, so a face to face support group seemed impractical. We decided that a website and support via and phone were the best options. We set up a website and produced leaflets and the ECMO team raised awareness of the group. Photograph of Sam Roden - London Marathon Tower Bridge, London. Always looking to develop we are currently working on a pack for children whose mum or dad is on ECMO and expanding the group of volunteers. There is even talk of an ECMO ball! The ECMO Co-ordinator Lisa s Story Lisa Brotherton is one of seven ECMO co-ordinators at UHSM CTCCU. Her involvement in the post discharge follow-up of patients revealed to her that many patients who made an excellent physical recovery thanks to the ECMO unit, were suffering hallucinations, flash backs and Post Traumatic Stress Disorder afterwards, making it difficult to resume normal life. Many of our patients are quite young in their 30s and 40s and fit and well. The speed with which they become critically ill is shocking. Coming to terms with that is very hard both for them and their families and we have found that over half show evidence of psychological after effects. We felt that we needed to provide some help and support. ECMO Family support is a key component in this provision. Going forward, we also hope that enabling patients to support others may have a positive impact on their own recovery. We have had contact with dozens of patients and families, some of whom have been in the midst of their ECMO experience, some now recovered and sadly some relatives whose loved ones have not survived. Comments like It has been good to share. Now I do not feel like I am going crazy! Thank you for ing, it is amazing how much it helps and (from a bereaved wife of an ECMO patient) Thank you so much for the help you gave me and hope when I needed it, I am very grateful to you both. Have made us realise how much ECMO Family Support was needed. ECMO is a highly specialised treatment, offered within designated centres. In 2012 the NHS commissioned five centres within the UK to offer ECMO for Adult Respiratory failure. This was in response to the increased demand and good results using ECMO on patients with swine flu during the pandemic. The equipment to perform ECMO is not available within every hospital and staff require specialist training to care for the circuit and manage the patients. The four other centres are Glenfield Hospital, Guys and St Thomas Hospital, Royal Brompton Hospital and Papworth Hospital. The ECMO Family Support website can be found at Blood and Transplant Matters September >

6 For further information about Pledge a Pint go to Photograph of Sam Roden with his family. Sarah and Sam Roden sam@pledgeapint.com Lisa Brotherton Extracorporeal Membrane Oxygenation Co-ordinator University Hospital, South Manchester lisa.brotherton@uhsm.nhs.uk A Regional Approach to Improving Consent to Blood Transfusion: The ICAG Pad It is reasonable to state that in the UK, we do not have a strong tradition of gaining informed consent to blood transfusion, in most clinical practice settings. This is demonstrated in the results of the NHS Blood and Transplant (NHSBT) National Comparative Audit of Blood Transfusion 2014 audit of Patient Information and Consent. Despite the excellent work done by the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the 14 clear and constructive recommendations they subsequently published in 2011, it seems response to these recommendations has been slow to date. In a recent publication of the British Medical Journal (BMJ) published 16 March 2015 Daniel K Sokol, a practising barrister and medical ethicist, summarised one of the most significant changes in consent since the SaBTO recommendations, that being, the change from consent being a recommendation as best practice, to becoming one of a legal requirement: After the Montgomery case, the so called Bolam test, which asks whether a doctor s conduct would be supported by a responsible body of medical opinion, no longer applies to the issue of consent. The law now requires a doctor to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. So doctors must now ask themselves three questions. Does the patient know about the material risks of the treatment I am proposing? Does the patient know about reasonable alternatives to this treatment? Have I taken reasonable care to ensure that the patient actually knows this? This significant change provides renewed stimulus to the work begun in the South East Coast (SEC) Region in 2013, on a regional approach to improving consent to blood transfusion under the advice from SaBTO and the National Blood Transfusion Committee June 2012 initiative of Patient Blood Management (PBM) as supported by NHS England. Work on the Informed Consent Action Group (ICAG) began by gathering a multidisciplinary group and sharing examples of local-informed consent initiatives already under way within the SEC Region. It soon became clear that several key principles needed to be engaged: The process should be simple, manageable and consistent. The responsibility to improve consent to transfusion, belongs to the whole Multi Disciplinary Team (MDT) and not just the authorising clinician. Everyone involved should use the same language, for example, you may get a high temperature rather than pyrexial, febrile or fever. The goal is not for the patient to be a transfusion expert, but to understand why we recommend a blood transfusion and how the benefit outweighs any potential risk. < 6 Blood and Transplant Matters September 2015

7 The outcome of this collaborative process is the ICAG Pad. A tool devised from a combin ation of ideas, to support the process and documenting of informed consent and to promote consistency of approach, as recommended by SaBTO. Enthusiasm was strong from both clinicians and transfusion practitioners to accept and implement this simple but effective tool. This is important because it must be stressed, that consent should and must not be reduced to a single conversation. This is about supporting the whole MDT to consistently provide the same message. This re-enforcement improves not only the patient s understanding of the risks, but also, strengthens the promise made by clinical staff, to follow safe transfusion policy and, therefore, to mitigate the risks as far as possible. The pad has been introduced across the SEC region in both NHS and Independent hospitals; examples of areas of implementation are Medical, Gynaecology, Obstetrics, Pre-Operative Assessment and Ambulatory Care Units. Within the larger hospitals the ICAG Pad pilot has been withheld from surgical patients at present, in order to avoid confusion with the surgical consent process. Following the successful presentation at the Serious Hazards Of Transfusion (SHOT) Annual General Meeting in 2014, it has also been requested for use in several other hospitals and regions. Dr Andy Allard at work in Surrey and Sussex Healthcare NHS Trust Front Cover Inside Front Cover Two Lebels Per Page A key feature of the Pad is the aide-memoire on the front and inside covers. This was designed for dual purposes. Firstly, to prompt the focus of whether a transfusion is the correct treatment option and secondly, once that decision is made it supports the clinician in summarising the risks of transfusion so that they can be simply and effectively explained and, discussed with the patient. The four risk categories are: 1. Human/Systems Error. 2. Transfusion Related Circulatory Overload. 3. Adverse Immune Responses. 4. Transfusion Transmitted Infection. This summary gives clinical staff a succinct framework on which to pin existing knowledge. There are two sticky labels per page, deliberately coloured to stand out in the patient s clinical notes, with tick boxes to efficiently record the indication for transfusion and, that a discussion with the patient has taken place and verbal consent has been obtained. The ICAG Pad is designed to be used in conjunction with the NHSBT Patient Information Leaflets and as a part of an informed discussion about transfusion or potential alternatives. The authors, recognise, however, that changing cultural medical and clinical practice takes time, and requires dedication and consistency from those champions promoting this change. In particular, with consent, the process is not absolute: different patients are affected by the context in which they require medical intervention and the attendant cultural and socio-economic factors. It was always anticipated that this would be a long term project. In order to assess the effectiveness of the ICAG- Pad and its implementation, work continues with the development of an on-line survey to gauge uptake, user preference and concerns and, potential areas for further development. Encouragement should be drawn from the fact that simply starting the process of improving consent to transfusion will bring benefits straight away; however as with anything new, practice is required to fine tune the approach, as taken by individual practitioners. Once this system is embedded in normal practice, we may find we have made tangible advances into the recommendations made by SaBTO as well as PBM and the General Medical Council (2013) and, that both patients and colleagues, will reap the rewards of safer and more appropriate transfusions. Blood and Transplant Matters September >

8 Emma Whitmore Patient Blood Management Practitioner NHSBT, Tooting Simon Goodwin, Specialist Practitioner in Transfusion, Surrey and Sussex Healthcare NHS Trust, East Surrey Hospital, Redhill. References: NHS Blood and Transplant National Comparative Audit of Blood Transfusion 2014 audit of Patient Information and Consent. audit-of-patient-information-consent.pdf Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTo), Patient Consent for Blood Transfusion, October British Committee for Standards in Haematology, Guideline on the Administration of Blood Components, December NHS Blood and Transplant, Patient Information Leaflet on Patient Blood Management. September Serious Hazards of Transfusion. Annual SHOT Report National Survey on the Use of O RhD Negative Blood Introduction This survey was conducted in response to a request made to the National Blood Transfusion Committee s (NBTC) Transfusion Laboratory Managers Group from the NBTC s Executive Group to re-examine the use of O RhD negative red cells in hospitals. The aim of the survey was to ascertain the extent of uptake of the recommendations from previous audits and surveys and to understand the reasons for and constraints to compliance with guidelines and recommendations from previous large scale audits 1,2,3,4,5,6. In June 2015 the NHS Blood and Transplant issued 16,690 O RhD negative red cells to hospitals in England and North Wales. This represented 12.3% of all red cells issued. Whereas total demand for red cells is decreasing the demand for O RhD negative red cells remains strong as represented in graph 1 below. Graph 1: Moving annual totals of red cells issued by NHSBT shows red cell issues decreasing, but O RhD negative issues, levelling off. Moving Annual Total of Red Cell (Full Unit Equivalent) Issues to Hospitals 000s 2,100 2,050 2,000 1,950 1,900 1,850 1,800 1,750 1,700 1,650 1,600 1,550 1,500 Apr-07 Jun-07 Aug-07 Oct-07 Dec-07 Feb-08 Apr-08 Jun-08 Aug-08 Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10 Apr-10 Jun-10 Aug-10 Oct-10 Dec-10 Feb-11 Apr-11 Jun-11 Aug-11 Oct-11 Dec-11 Feb-12 Apr-12 Jun-12 Aug-12 Oct-12 Dec-12 Feb-13 Apr-13 Jun-13 Aug-13 Oct-13 Dec-13 Feb-14 Apr-14 Jun-14 Aug-14 Oct-14 Dec-14 Feb-15 Apr-15 Jun MAT Total MAT O Neg < 8 Blood and Transplant Matters September 2015

9 Methods An online survey was constructed using SNAP Surveys. A copy of the survey is available on request. The survey was distributed by the Chair of the National Transfusion Laboratory Managers, (NTLM) Group via the Regional Transfusion Committee (RTC) network to all hospitals, with a transfusion laboratory on site. Results 125 completed responses were returned. This is approximately 50% of the total number of sites to which the survey was distributed. Key results are shown in Table 1 indicating current perceptions of performance against key questions. These are compared with the recommendations of the National Comparative Audit carried out in Table 1 Compliance Against Previous Recommendations Re-Audit of the Use of Group O RhD Negative Red Cells, NCA 2010 Recommendations 1. Hospitals must regularly review use of O RhD negative red cells for emergencies and investigate incidents where its use is considered inappropriate. 2. Hospitals must provide group specific red cells rapidly to avoid unnecessary use of emergency group O RhD negative red cells. 3. In some cases in an emergency non-o RhD negative patients are being unnecessarily transfused with more than three units of O RhD negative red cells; hospitals should regularly review practice to ensure that this is kept to a minimum. 4. For Group O RhD positive recipients with alloantibodies all efforts must be made to identify phenotypically matched group specific blood Survey Findings Majority of hospitals are following the recommendation: 76% said they always followed up Massive Haemorrhage activations, 22% sometimes and 2% never followed it up. 59% of hospitals could switch to group specific red cells by 15 minutes. Time it takes to switch to group specific red cells (minutes, denominator,n = 123): 10 minutes n = 44 (35%) n = 28 (23%) = 22 (18%) = 10 (8%) >30 = 19 (15%). Majority of hospitals are following the recommendation; 66% said they always investigated when more than two units of O negative were used, 34% said they did not investigate when more than two units of O negative were used. Not Applicable This was outside the scope of this survey. 5. NHSBT/Blood Services must provide a sufficient number of extensively phenotyped O RhD positive units of blood, in order to enable the appropriate selection of group specific blood, for patients with alloantibodies. 6. Hospitals must reduce their stock levels of O RhD negative red cells to the recommended level of 10.5% in order to avoid transfusions to non-o RhD negative patients and wastage due to time expiry. 7. Appropriate policies which guide use of O RhD negative red cells should be introduced in order to reduce unnecessarily high stockholding levels. 34% have a maximum stockholding of 10.5% and below. Majority of hospitals are following the recommendation; 94% said they reviewed their O negative stock levels. 6% said that they did not review their O negative stock levels. 81% said they have a lab stock holding policy to transfuse O negative blood to non-o negative patients. 18% said they did not have a policy of O negative to non O negative transfusion, to avoid time expiry. 99% said they have a policy for active stock management of emergency units with timely rotation back into general stock. 58% said they have a policy for transfusing O positive blood to adult males with unknown blood group. 42% said that they did not have a policy for doing that Blood and Transplant Matters September >

10 Following a review of these findings, the following recommendations were made. 1. Hospitals to collect data quarterly on the percentage of O RhD negative units transfused on non-o RhD negative recipients to prevent time expiry, and present at local Transfusion Laboratory Meetings for benchmarking levels. 2. Hospitals must find a system to review use of O RhD negative red cells in an emergency and investigate incidents where its use is considered inappropriate (reflection of the NCA 2010 recommendation). 3. Hospitals should review their processes for the release of ABO compatible red cells to ensure timely issue of group specific blood. 4. Manufacturers of grouping analysers should review their platforms to ensure a reliable blood group is available to facilitate this with a target of less than 15 minutes. 5. Hospitals should consider increasing the frequency (in other words weekly) of emergency O RhD negative stock rotation. 6. NHSBT to complete a feasibility study, to show what impact sharing O RhD negative between organisations might have. 7. NHSBT to provide information to the NTLM, to show how integrated working has supported a reduction in O RhD negative issues, use and wastage. 8. NBTC, Blood Stocks Management Scheme and NHSBT Customer Services teams should provide a platform to contact people willing to share their best practice nationally. 9. NHSBT to formally report on their actions from the 2010 NCA audit to the NBTC. Conclusion This survey analysis, supports the decision not to carry out another NCA audit of the use of O RhD negative red cells at this time. Previous recommendations discussed here, still need some time to embed in practice. The current target of 10.5% O RhD negative stock-holding does not necessarily relate to the appropriate use of this precious resource. A focus on more appropriate use, will ensure that it is available to those patients for whom there is no alternative. Amanpreet Dhesi Region Lead: Patient Blood Management Practitioner Team NHSBT, Tooting amanpreet.dhesi@nhsbt.nhs.uk Stephen Bassey Consultant Transfusion Scientist Royal Cornwall Hospitals Trust Acknowledgements: Hospital Laboratory Managers across all regions for completing and submitting the data. National Transfusion Laboratory Managers group for discussing results and completing audit report. Brian Hockley and Aman Dhesi for support in data analysis and report writing. Further information about the survey and a full report can be obtained from: Brian Hockley Data Analyst and Audit Manager NHSBT, Sheffield brian.hockley@nhsbt.nhs.uk References: 1 Appropriate Use of O RhD Red Cells cells_doc_2010.pdf 2 Multi Regional Audit of O Negative Rh D Blood Use (Marc Lyon and Dora Foukaneli). PowerPoint presentation. 3 National Comparative Audit of O RhD Red Cell Use (re-audit) cells_doc_2010.pdf 4 Page J, Jones A, Macrate E, Webb M, Birchall J; South West Regional Transfusion Committee. Transfusion Medicine A survey of O RhDnegative red cells in the South West: stocks and distribution compared with use and wastage. 5 East of England unpublished 6 BSMS stock management recommendations. emergency_use.pdf < 10 Blood and Transplant Matters September 2015

11 The Man with the Golden Blood 21 October 2014 In order to determine our blood type, laboratory staff need to identify the presence or absence of antigens on the surface of our red blood cells. It would be straightforward if we all had the same blood, but we do not. On the surface of our red blood cells, we have up to 342 antigens molecules capable of triggering the production of specialised proteins called antibodies. Some 160 of the 342 antigens are high-prevalence, which means that they are found on the red blood cells of most people. If you lack an antigen that 99 per cent of people in the world are positive for, then your blood type is considered rare. If you lack one that per cent of people are positive for, then your blood type is considered very rare. It is important that you receive blood from a compatible donor, as incompatible donor blood cells can trigger a transfusion reaction which can be fatal. Although rare blood is hardly ever needed, when it is required, finding a donor and getting the blood to a patient in crisis, can be a challenge. In some cases, it may involve an international network of people to track down a donor in one country and, fly a bag of their blood to another. There are 35 blood group systems, organised according to the genes that carry the information to produce the antigens within each system. The majority of the 342 antigens belong to one of these systems. The Rh system (formerly known as Rhesus ) is the largest, containing 61 antigens. The most important of these Rh antigens, the D antigen, is quite often missing in around 15% of Caucasians, that is, they are Rh D negative. When ten-year-old Thomas, a young boy in Switzerland, was admitted to hospital with a routine childhood infection, his blood test appeared to be missing an entire blood group system. Thomas results confirmed he lacked all the Rh antigens, making his blood type Rh null one of the rarest in the world, a phenomenal discovery for the hospital haematologists and, he had instantly become infinitely precious to medicine and science. Rh null blood was first described in , in an Aboriginal Australian woman. Until then, doctors had assumed that an embryo missing all Rh blood cell antigens would not survive, let alone grow into a normal, thriving adult. By 2010, nearly five decades later, some 43 people with Rh null blood, had been reported worldwide. Researchers, seeking to unravel the mysteries of the physiological role, of the intriguingly complex Rh system, are keen to get hold of Rh null blood, as it offers the perfect knockout system. Rare negative blood, is so sought after for research, that even though all samples stored in blood banks are anonymised, there have been cases, where scientists have tried to track down and approach individual donors directly to ask for blood. As Rh null blood can be considered universal blood for anyone with rare blood types within the Rh system, its lifesaving capability is enormous. As such, it is also, highly prized by doctors although it will be given to patients only in extreme circumstances and, after very careful consideration, because it may be nigh on impossible to replace. Dr Thierry Peyrard, the current Director of the National Immunohaematology Reference Laboratory in Paris described it as, The golden blood. Blood groups are inherited and Rh null is known to run in families. The haematologists tested Thomas family in the hope of finding another source, particularly as Thomas would not be able to donate until he turned 18. The results showed that Thomas grandfathers were third-degree cousins, but his Rh null blood was due to two completely different random mutations on both sides. Pure chance, twice over, in the face of vanishingly small odds. When he turned 18, Thomas was encouraged to donate blood for himself. There is no Frozen Blood Bank in Switzerland, so his blood is stored in the Rare Blood Banks in Paris and Amsterdam. He travels to France to donate, taking a day s holiday from work, twice a year, and paying his own travel costs. The first urgent request came a few years after Thomas began donating, when he got a phone call asking if he would donate for a newborn baby. That moment brought it starkly home to him how valuable his blood was. Since his blood can be given to anyone with a negative Rh blood type, Thomas could save countless lives. But if he ever needs blood himself, he can receive only Rh null blood. If he donates a unit for himself, he has to permit it to be used by anyone else who might need it. This leaves Thomas dependent on other Rh null donors, but of the other 40 or so people known worldwide with Rh null blood, only around six or so, are thought to donate. To complicate things further, they are spread across the globe: their locations include Brazil, Japan, China, the USA and Ireland. Blood and Transplant Matters September >

12 Thomas described the impact of his blood type on his life. As a child he could not go to summer camp, because his parents feared he might have an accident. As an adult he takes reasonable precautions: he drives carefully and does not travel to countries without modern hospitals. He keeps a card from the French National Immunohaematology Reference Laboratory in Paris, confirming his Rh null blood type, in his wallet in case he is ever hospitalised. But one thing that is in his blood and that of almost everyone growing up in the shadow of the Alps is skiing. Abstaining seems to have been an option he never even considered. The only apparent health effect he experiences is mild anaemia, which is why he was advised to donate twice a year instead of four times. This article is an edited extract from The Man with the Golden Blood, written by Penny Bailey and published by Mosaic ( under a Creative Commons Licence. Penny Bailey Resources: Human Blood Groups by Geoff Daniels (2013, Wiley-Blackwell). book/ / The Blood Group Antigens Fact Book by Marion E Reid and Christine Lomas-Francis (2003, Academic Press). 7CYsC&rdid=book-weFGCsl7CYsC&rdot=1&source=gbs_ vpt_read Blood Group Terminology from the International Society of Blood Transfusion. The International Blood Group Reference Laboratory, Bristol, UK. References: 1. PIIS (61) /fulltext Meet the Donors, Patients, Doctors and Scientists Involved in the Complex Global Network of Rare and Very Rare Blood A 70-year-old lady had a tumour in her heart, but no hospital in Nigeria could perform the surgery she needed. The surgery was expensive and money was raised so the lady could receive her operation, in the United Arab Emirates (UAE). Unfortunately, the blood results revealed that she had a rare blood type, shared by 0.2 per cent of the white population: Lutheran b negative. To complicate the matter, she was also O negative the uncommon, but not officially rare blood type that many of us have heard of, shared by around five per cent of people. The combination made her blood so rare it would be difficult, if not impossible, to find a match. Since there was no compatible blood in the UAE or any of the other Gulf States, the lady was flown back home and waited until matched blood was found. The hospital searched for blood but could not find any in the two weeks that followed so the search for compatible blood was extended to include the USA. The medical staff were referred to the American Rare Donor Program 1 in Philadelphia, a database of all rare blood donors in America and finally, suitable donors had been identified. Sometimes, sending blood from one country to another, is more than a bureaucratic nightmare. The hospital in the UAE had a policy not to accept blood donations from outside the Gulf States, which meant that the lady would not be able to use the blood that had been found in America. After further investigation, a small general hospital in Cameroon, Nigeria s neighbour to the east, confirmed that they could do the surgery if compatible blood could be supplied. The American Rare Donor Program, contacted the South African National Blood Service, which had four suitable donors listed; however, one of these was unreachable, one was not able to donate until later in the year and two had been medically retired from donating. These, are all common problems, with rare donors. There are limits placed on how often people can donate. What is more, keeping track of donors can also be a challenge some get ill or die and others move home without notifying the blood services. There were two units of compatible blood in South Africa s Frozen Rare Blood Bank, but frozen blood has a 48-hour lifespan, compared with five weeks for fresh blood. If it got held up at customs, or delayed for any other reason, it would be unusable by the time it reached the hospital in Cameroon. To use the frozen South African blood, her operation would need to take place in South Africa. One last chance to find blood, the lady so desperately needed, was a laboratory on the other side of the Atlantic; the International Blood Group Reference Laboratory (IBGRL) 2 in Filton, near Bristol, which is one of the world s leading laboratories in rare blood identification. < 12 Blood and Transplant Matters September 2015

13 It also maintains the world s database of rare blood donors, the International Rare Donor Panel. The panel exists to ensure that if anyone, anywhere in the world, ever needs rare blood they will have the best possible chance of getting it. If the donor and recipient are in different countries, the blood services of both countries will negotiate costs. The requesting country usually covers the cost of flying the blood in at 4 C, the temperature at which, fresh red blood cells have to be preserved to keep them viable. Most countries do not charge too much, because they might be in the same situation at some point.. The International Rare Donor Panel identified 550 active O negative/lutheran B negative donors worldwide, 400 of those donors were in the UK most of them in or around London. A flight from the UK, to Cameroon, would be much shorter than a flight from the USA and the blood would be fresh. The UK blood services were able to contact six donors who agreed to donate within days. The six units were couriered to Tooting in South London to start their 7,000km journey. Even packed in ice, it would be hard to keep it at the cell-preserving 4 C. The blood arrived at the airport where a helicopter was waiting outside, to avoid the lengthy road journey. The operation was a success and the efforts of so many people on three separate continents were needed to save one life. This article is an edited extract from The Man with the Golden Blood, written by Penny Bailey and published by Mosaic ( under a Creative Commons Licence. Penny Bailey Resources: Human Blood Groups by Geoff Daniels (2013, Wiley-Blackwell). The Blood Group Antigens Fact Book by Marion E Reid and Christine Lomas-Francis (2003, Academic Press). Blood Group Terminology from the International Society of Blood Transfusion. The International Blood Group Reference Laboratory, Bristol, UK. 1 american-rare-donor-program 2 Non-Invasive Fetal RHD Screening Service Background: Anti-D immunoglobulin (anti-d Ig) prophylaxis has been a highly successful example of preventative medicine. It has reduced the incidence of sensitisation of pregnant women to the D antigen and thus haemolytic disease of the fetus and newborn (HDFN) 1. The current policy 2 of giving anti-d Ig antenatally means that almost 40% of D-negative pregnant women (approximately 40,000 women per year in England receive antenatal anti-d Ig in pregnancy unnecessarily, because they are carrying an RhD-negative fetus. The International Blood Group Reference Laboratory (IBGRL), led the transition from amniocentesis and chorionic villus sampling, to non-invasive fetal blood group and gender testing, using cell free fetal DNA (cffdna) in maternal plasma. Use of cffdna testing is a clinical service to aid management of pregnant women with anti-d, anti-c or anti-k at risk of HDFN 3. Detection of fetal Y chromosomal material has also been provided as a clinical service for families at risk of X linked disorders. IBGRL, later optimised and automated the testing technology. This enabled a sufficiently high throughput, which is now being used to perform the screening test for fetal RhD blood grouping of RhD-negative women, who have not formed immune anti-d. National fetal RHD testing programmes for all D-negative pregnant women, have been introduced successfully in other countries (Denmark, Netherlands, Finland, parts of Sweden). However, these countries (with the exception of the Netherlands), did not have a pre-established antenatal anti-d Ig administration programme, and were therefore considering implementation of fetal RHD screening from a different starting point. Several trials have been carried out at IBGRL to investigate the performance of the fetal RHD screening test. A National Institute for Health Research (NIHR) funded multi-centre study 4 investigated test sensitivity at different gestational ages and concluded that the test is reliable after 11 weeks gestation. Following this study, a service implementation pilot was undertaken to identify potential difficulties in clinical practice and assess how easily they could be overcome in the NHS. 5 Results have shown that it is possible to implement routine cffdna fetal blood grouping in RhDnegative women in the NHS. The requirements of patient Blood and Transplant Matters September >

14 information, consent, sample-handling, result transfer and implementation of the changed management for anti-d administration, were all successfully met. The accuracy of the fetal RHD screening test is very high. There is approximately 0.1% likelihood of a fetus being incorrectly predicted to be RhD-negative. When fetal RHD screening is performed the proportion of women, who will be recommended to receive antenatal anti-d unnecessarily, is just 2% (compared with 38% without fetal RHD screening). Incorrect prediction of a fetus to be RhD-positive can occur when a variant RHD gene is present or when test results are equivocal, in which case anti-d administration is recommended. 77% of the women with inconclusive test results gave birth to RhD-positive fetuses 5. Refinement of the cffdna test will continue and, therefore, it is likely that the inconclusive rate will be reduced in the future. Conclusions: Fetal RHD screening can predict fetal RhD status with high accuracy and will improve care for all RhD-negative women in England. The current practice of giving a blood product that is pooled from multiple donors, to healthy pregnant women, is undesirable and unnecessary. We recommend that the fetal RHD screening service is extended to the whole of England, to allow the use of anti-d Ig in a more precise way, only giving it to those mothers who need it. The cost of the test is offset by: 1. Reduction in the use of anti-d Ig at 28 weeks. 2. Not giving anti-d Ig for potential sensitisation events. 3. Decrease in associated requests for feto-maternal haemorrhage estimation. Population Distribution: The prevalence of RhD-negative women in a Caucasian population is 15%, of which 38% to 40% will have RhDnegative babies. These figures will differ depending on the ethnic diversity of the local population, which may affect projected cost savings for implementation of the test. Service Implementation: Following the successful service pilot in the South West, the fetal RHD screening test has been incorporated into the IBGRL portfolio from the 1st April A service level agreement change was prepared for the pilot hospitals and any hospital that would like to implement this test. The roll-out will be phased with the aim of providing a service for all NHS England hospitals by Sample Acquisition: The service is tailored to the needs of local maternity services. Samples can be taken from 11 weeks gestation onwards, at the time of routine antenatal clinic appointments. The knowledge of the fetus predicted genotype, will enable obstetric teams to focus anti-d administration on women with RhD-positive fetuses. Please note that this high throughput test should not be used for RHD genotyping of alloimmunised women with anti-d. Testing of alloimmunised women should be performed from 16 weeks gestation, using the established IBGRL Genotyping service. This will ensure adequate sensitivity and specificity, for the management of these pregnancies. Leaflets and Request Form: To support midwives and pathology staff, NHS Blood and Transplant (NHSBT) has developed a user guide, patient information leaflet and request form, for all hospitals that sign the amended Service Level Agreement (SLA) for referral of fetal RHD screening samples to NHSBT. Transport and Reporting: NHSBT will collect samples from hospital pathology laboratories via our established routine rounds. The turnaround time for the fetal RHD screening test is 14 days. All results will be available via Specialist Services Electronic Reporting using Sunquet Integrated Clinical Environment (Sp-ICE), the electronic NHSBT reporting system which enables hospitals to have direct access to reports on-line. This supports better transfusion therapy in the event of shared care or delivery at another hospital, as the report can be accessed at any authorised hospital. Hard copies may also be sent to the requesting pathology laboratory if required Price: The price for the fetal RHD screening test has been set at for 2015/16 For further information or, if you are interested in implementation of this test in your hospital contact: Erika Rutherford Business Development Manager Red Cell Immunohaematology Diagnostic and Therapeutic Services NHSBT, Colindale erika.rutherford@nhsbt.nhs.uk < 14 Blood and Transplant Matters September 2015

15 Kirstin Finning Head of Molecular Genetics, IBGRL NHSBT, Filton, Bristol Nomenclature clarification: RhD is the phenotype RHD is the genotype References: 1 Urbaniak SJ, Greiss MA., Blood Rev Mar;14(1): NICE Technology appraisal guidance [TA156] Finning K et al, Transfusion Nov;47(11): Chitty LS et al, BMJ Sep 4;349:g5243. doi: /bmj.g Soothill P et al, BJOG Aug 21. doi: / Non-inherited Maternal Antigens (NIMA) as Permissible HLA Mismatches In Cord Blood Transplantation Tissue compatibility between a donor and recipient, is determined by the Human Leukocyte Antigen (HLA) genes. HLA disparity increases the risk of developing acute graft-versus-host disease (GvHD), a major cause of morbidity and mortality after allogeneic haematopoietic stem cell transplantation (HSCT). A major advantage of using cord blood (CB) as a stem cell source is the lower associated incidence and severity of acute and chronic GvHD which has been attributed, in part, to the tolerogenic status of the foetal immune system. This characteristic permits less stringent HLA matching requirements compared with HSCT using stem cells from adult donors. However, it is still desirable to achieve a full match (6/6, HLA-A and B at antigenic/intermediate level and DRB1 at high resolution level), since HLA mismatched CB transplantation (CBT) is associated with inferior patient survival, due to increased transplant related mortality (TRM) and GvHD. The likelihood of finding a 6/6 HLA matched CB unit (CBU) remains low, particularly for patients of ethnicities other than European Caucasoid, despite a significant increase in CBU registry size and their wider representation of ethnic groups, compared with adult donor registries. If an ideal genetic match cannot be found, the ability to identify HLA mismatches with tolerogenic potential could offer us the option of finding a suitable CBU for more patients. Examples of such permissible mismatches are the non-inherited maternal antigens (NIMAs), defined as the maternal HLA antigens not inherited by the foetus (Figure 1). Successful pregnancy depends upon maternal tolerance of the paternal antigens expressed by the foetus and, conversely, it has been shown that the bidirectional trafficking of cells and molecules across the placenta during pregnancy, results in long-lasting maternal microchimerism in the foetus which, in turn, leads to the development of immunological tolerance towards NIMA. A beneficial effect of NIMA has been observed in haploidentical sibling renal (Burlingham, et al 1998) and HSCT (van Rood, et al 2002). Burlingham et al. reported a ten year kidney graft survival of 77% when the mismatched haplotype was NIMA, comparable with survival of HLA identical sibling grafts and, superior to the observed 49% graft survival, for those where the mismatched haplotype was not NIMA. Unrelated CBT offers the opportunity to investigate NIMA in the unrelated donor setting because of the ability to determine the CB NIMAs from maternal HLA typing. An example of a NIMA-matched CBT is illustrated in Figure 2A: although there is not a perfect match between donor and recipient, the mismatched recipient allele was present in the mother of the child whose CB is being used in the transplant. A retrospective analysis performed on patients with haematological malignancies found that NIMA matched grafts were associated with lower TRM and improved engraftment, leading to reduced overall mortality compared mismatched, non-nima matched CBT (van Rood, et al 2009) (Figure 2B). This beneficial effect was observed for both single mismatches with one NIMA match (5/6 + 1 NIMA) and two mismatches with one NIMA match (4/6 + 1 NIMA). These studies have sparked interest in the possibility of selecting a NIMA matched CBU, to improve the availability of unrelated CBU donors. Substitution of 1, 2 or 3 of the CBU inherited HLA-A, -B and/or DRB1 for a NIMA can yield up to 26 additional phenotypes, thus significantly increasing the potential number of phenotypes available for CBU donor searches. At present there are over 600,000 unrelated CBUs registered with Bone Marrow Donors Worldwide (BMDW). Twenty nine thousand of these CBUs have maternal HLA typings available and it is now possible to prospectively search for a NIMA matched CBU through this registry by using the BMDW NIMA Match Programs online ( Blood and Transplant Matters September >

16 In accordance with the NHS Blood and Transplant (NHSBT) strategy of providing improvements in HLA matching for patients requiring unrelated donor HSCT, we are now performing maternal HLA typing of the CBUs banked with the NHS-Cord Blood Bank (NHS-CBB) and listed in the British Bone Marrow Registry. By September 2014 the Histocompatibility and Immunogenetics (H&I) Department at NHSBT Colindale had completed maternal HLA typing for 4,669 of our total 21,000 CBU donors and, this has yielded 74,890 additional phenotypes, thus increasing the effective size of the NHS-CBB inventory fourfold. We are currently investigating whether these NIMA phenotypes are able to provide matched CBU donors, with adequate total nucleated cell dose, for patients belonging to different ethnicities and, without an inherited 6/6 matched donor available. Performing maternal HLA typing for the banked CBUs, therefore, increases the number of HLA phenotypes available for donor searches and, by considering NIMA as a permissible HLA mismatch, offers the possibility of identifying a CBU donor for patients who lack a suitable 6/6 matched CBU. Figure 1: The inheritance of HLA haplotypes. Father IPA/NIPA Mother NIMA/IMA a b c d Key a = NIPA b = IPA c = NIMA d = IMA b d Child IPA/IMA NIMA are the HLA antigens of the mother that the feotus has not inherited Maternal cells cross the placenta to the foetus (maternal microchimerism) Foetus is exposed to NIMA and develops tolerance Pregnancy image taken from: Irie N (2011) Emerging Questions in Materno-Fetal Microchimerism. Reproductive System and Sexual Disordes Journal S1:002. doi: / X.S1-002 NIPA, noninherited paternal antigen; IPA, inherited paternal antigen; NIMA, noninherited maternal antigen; IMA, inherited maternal antigen Figure 2A: Example of a NIMA matched CB transplant. HLA-A HLA-B HLA-DRB1 Patient 02, 24 18, 35 01:01, 11:04 CB donor 02, 32 18, 35 01:01, 11:04 CB donor s mum 02, 24 07, 35 01:01, 13:01 < 16 Blood and Transplant Matters September 2015

17 Figure 2B: Probability of three year transplant related mortality after NIMA matched and NIMA mismatched CB transplantation(van Rood, et al 2009). Transplant-related Mortality (Patients 10 Years Old) 80 % with TRM (cum. Incid.) MM, No NIMA Match 2 MM, NIMA Match 1 MM, No NIMA Match 1 MM, NIMA Match 0 Mismatch Years Post-Transplant Leonie Powley, BSc PhD Student Histocompatibility & Immunogenetics Research NHSBT Colindale & Division of Infection and Immunity, University College London leonie.powley@nhsbt.nhs.uk Cristina Navarrete, PhD FRCPath Principal Investigator Histocompatibility & Immunogenetics Research NHSBT Colindale & Division of Infection and Immunity, University College London cristina.navarrete@nhsbt.nhs.uk References: Burlingham WJ, Grailer AP, Heisey DM, Claas FH, Norman D, Mohanakumar T, Brennan DC, de Fijte H, van Gelder T, Pirsch JD, Sollinger HW & Bean MA (1998) The effect of tolerance to non-inherited maternal HLA antigens on the survival of renal transplants from sibling donors. N Engl J Med, 339, van Rood JJ, Loberiza FR, Zhang MJ, Oudshoorn M, Claas F, Cairo MS, Champlin RE, Gale RP, Ringdén O, Hows JM & Horowitz MH (2002). Effect of tolerance to non-inherited maternal antigens on the occurrence of graft-versus-host disease after bone marrow transplantation from a parent or an HLA-haploidentical sibling. Blood, 99, van Rood JJ, Stevens CE, Smits J, Carrier C, Carpenter C & Scaradavou A. (2009) Re-exposure of cord blood to non-inherited maternal HLA antigens improves transplant outcome in hematological malignancies. Proc Natl Acad Sci U S A, 106, Blood and Transplant Matters September >

18 Top Tips for Running Deceased Organ Donation Simulation Courses Deceased organ donation is ethically, legally and emotionally complex. Healthcare professionals find deceased organ donation stressful 1,2 and the shift in focus from one of cure to one of care is a challenge, even to those with many years of experience. Staff involved in deceased organ donation require expert levels of knowledge and skills in communication. The Department of Health Organ Donation Taskforce report (2008) recognised this need and made the following recommendation: All clinical staff likely to be involved in the treatment of organ donors should receive mandatory training in the principles of donation. 3 This need was reinforced by the National Institute for Health and Care Excellence (NICE) guidance, designed to improve donor identification and consent rates for deceased organ donation. 4 The Taking Organ Transplantation to 2020 strategy asks NHS Blood and Transplant (NHSBT) to work with professional bodies to develop training programmes to sustain and increase clinicians organ donation understanding and expertise and, to ensure that families of potential donors will only be approached by someone who is both specifically-trained and competent in the role and, provide training packages and accreditation to those who wish to develop this competence. However, any opportunity for deceased organ donation, occurs at times of significant family distress and, it is often inappropriate to allow junior staff, to take a lead in discussing donation with families or to be the key healthcare professional, providing family bereavement support. Dr Arpan Guha, former Director of the Cheshire and Merseyside Simulation Centre summarised the problem as, It is usually not possible to train during these periods, due to it being a time of sensitivity. Therefore, much of the learning occurs either in a piecemeal fashion on the job, or in classrooms based on theory and quite removed from the real world of the critical care environment. 5 Simulation allows staff training and development in a safe environment while enacting real-time events. The high-fidelity simulation environment has already proven to be an effective education tool in intensive care, for providing advanced life support training and acute crisis management but, simulation to train for non-crisis situations, such as, for deceased organ donation, is an area of huge potential in the UK. In May 2011, we ran the first of our whole hospital Deceased Organ Donation Simulation Courses at Nottingham University Hospitals NHS Trust. 6 Since then we have run eleven more courses for our staff and three for regional hospitals who have paid to attend. We believe that our simulation day, has been fundamental to why in Nottingham, we have gone from one of the worst donating hospitals in the UK, to one of the best. The overarching aim of our simulation day is to create a multi-disciplinary training environment that can mimic real life patient journeys. In our course, a patient presents in the Emergency Department (ED), assessment leads to the recognition that death is imminent and allows for the consideration and implementation of deceased organ donation pathways. All participants undertake their own roles at their own grade (ED nurses and doctors, intensive care nurses, neurosurgery doctors), except for the intensive care doctors, who are asked to act up as consultants, since many of the decisions and required paperwork in deceased organ donation must be led directly by a consultant. Professional actors are hired to ensure the simulated interaction with family members is as near to real life as possible and to provide insightful feedback on the communication technique and messages. Our day is divided into two long scenarios (donation after brainstem death and donation after circulatory death) each divided into chapters and interspersed with regular breaks for focused reflective debriefing sessions. A wide variety of our own hospital staff participate as observers, including Health Care Assistants, Theatre Staff and Bereavement Teams, who though important to the donation process, often feel outside the usual education and support mechanisms. We have welcomed external visitors such as coronial staff, members of the UK Donation Ethics Committee and health professionals from other hospitals. Clinical Leads for Organ Donation and Specialist Nurses from other Trusts have also attended to see what we do and, some of these have used this experience to commence their own simulation training in their hospital. There is a bright future for deceased organ donation simulation in the UK. Nationally, in 2015, new specialist nurses for organ donation will have three days of simulation training built into their induction programme. After a successful pilot of a Deceased Organ Donation Simulation Course for trainees in intensive care medicine in November 2013, this course will formerly commence this year, with the eventual aim that every graduating intensive care doctor, will have attended. Regional and Hospital Simulation Courses have commenced elsewhere in the UK and more are planned. With this growing interest, we felt that with four years experience and 16 courses under our belt that now is the time to share the lessons we have learnt. Before we do so it is worth considering what deceased organ donation simulation is. < 18 Blood and Transplant Matters September 2015

19 Deceased Organ Donation Simulation Deceased organ donation simulation is any educational activity that aims to mimic or replicate an aspect of the deceased organ donation process. For the purposes of a working UK definition we believe it should include at least one of the following aspects: 1. Use of a mannequin to represent a patient. 2. Recreation of a realistic clinical environment. 3. Use of professional actors. Our Top Ten Tips These are our top ten tips and learning points from the deceased organ donation simulation courses we run. Their relevance for other courses will certainly vary depending on the nature of that simulation course. 1. Tell a Story Human beings are storytellers. It has an ancient pedigree for teaching and the popularity of movies and novels proves it is still a vital part of the human psyche. Let your simulation course tell a story and those participating or observing will engage in ways they never would for tutorials or random scenario role-play. Our day tells just two stories but we let those stories run even if the participants move off track and we never go back and repeat a scene for a Take 2. We use the debrief sessions to pull the subject matter back if required. 2. The Simulation Environment is There to Make the Story Feel Real Nothing More We commence our simulation day with a patient brought into the ED resuscitation area with major trauma. The trauma team is called and assessment and resuscitation commences. Until the patient is intubated, we do not care (except in the most general terms) about the resuscitation. What we are waiting for is the moment of intubation. As soon as that occurs we push the actors into the simulation room as mum and dad, unexpectedly arriving into the chaos and emotionally distraught. The whole previous twenty minutes has been building to this communication moment. How will the resuscitating team react? The themes we will bring out in the debrief are about the pros and cons of families observing resuscitation, the impact the way they are treated in those first few moments will have on their whole hospital experience, the vital importance of consistency in information and the difficult dilemma staff always have in these situations, where prognosis is unknown and families are seeking reassurance. These themes could be covered in a tutorial or just role play of that moment, but the twenty preceding minutes invest the participants and observers in the story we are telling and make their reactions that much more genuine. That is what the simulation environment is there for to make the decision-making and communication moments emotionally resonate. 3. Observers are Also Your Participants Many people have an important role in deceased organ donation but are non-clinical, for example coronial staff, philosophers, marketing and communication managers etc. Simulation is as close as you can get them to the real thing. It is eye opening for them. They start to truly see the complexity and emotional challenge that deceased organ donation is. This can only help them in their support for deceased organ donation. Likewise there are health care professionals (senior medical and nursing staff) who would never allow themselves to be put in a vulnerable position as a participant in a simulation. Have them along as observers or as assisting faculty. It will still have an impact, and their experience can strengthen the debrief sessions. 4. Keep it Simple You write the clearest case for approaching a family regarding the opportunity for deceased organ donation you can imagine. Your participants are on a deceased organ donation simulation day. However, still they struggle to raise donation with the family. You do not need complexity, it serves only to add confusion and detract from the confidence otherwise engendered. They (and many more senior colleagues as well) will struggle with just doing the simple things. Just watch how people stutter and stumble over explaining brainstem death. There is no need for complex scenarios (for example angry and aggressive families, confounders in the neurological death tests, complex consent concerns). Simple cases work best unless you have a very experienced group. We have noticed that we have become more didactic with our participants over time, so it is very clear what is expected at all times. There are certain moments that are powerful to simulate because they are the hardest to do in real life. We call these showtime moments. For example, the explanation and realisation of the likelihood of death. Any interaction with the family (actors) is invariably useful and fits this category. Allowing participants time to simulate the planning for these discussions not only helps to tell the story, it encourages best practice. Likewise, interaction by staff with the specialist nurse for organ donation allows the benefits and expertise their role can bring to an emotionally charged situation to be highlighted. 5. Keep it Safe Your participants need to feel safe. This is particularly important when, like our course has, there are multiple Blood and Transplant Matters September >

20 observers attending the day. If the participants were very experienced at it, they would not need to be attending. Most of our participants have never led donation conversations previously. One colleague of ours, first led raising deceased organ donation with a family, in our simulation day; the next time was as a consultant six months later. Simulation gives people the chance to have a go before they have to do it for real. For all these reasons, you must keep your participants feeling safe. Their performance should be confidential and not in any way be used for assessment. Equally, debriefs work best when the group are able to voice opinion and experience freely, and subsequent discussion allows concepts to be shared, explained and challenged. 6. Change Attitude not Process Traditional acute crisis simulation such as trauma, CPR and anaphylaxis moulage try to correct and alter the way someone does some defined process. Non-crisis simulation, like we run, is very different. It is about trying to change attitudes not processes. Yes, teaching that the specialist nurse for organ donation should always be involved when families are approached for organ donation, is a process change but, if you convince your participants of the value of collaborative communication by allowing them the opportunity to live through and reflect on that experience an attitude change will occur. Then the process change will follow. For this reason our debriefs stay high-level. They are not, you should not have said that word or why did you not pass the box of tissues. Instead they might ask about the D word when should the possibility of death be raised with a family? 7. Teach a Toolbox Not a Recipe No family or situation is exactly the same. You can not sit here, lean forward now and say this and if you do all that, the family will always say yes to donation. What we teach is about best practice end of life care and being family responsive, not about getting a certain response. That is what good care is about. That is what we would want for our family and ourselves. There may be better and worse ways to achieve this, but no way works all the time. Teach those in your simulation, a toolbox of approaches that they can have at their disposal for the future and teach them how to listen to the family so that they can respond accordingly. 8. It is All About the Debrief This is where the course leaders need to bring all the concepts and ideas together. If the participants have gone off script (not used the specialist nurse for organ donation, not even mentioned organ donation even on a deceased organ donation simulation day!) It is in the debrief that these issues can be explored, barriers and resistance discussed and challenged, and the story put back on track, if required. Keep the debrief high-level. It is not a safe environment to individually criticise a participant; if you have real concern talk to them later and in private. Emotions often run high, this needs to be acknowledged and individuals supported within and without the group. The day will bring back distressing memories for some and all will find it emotionally draining. We find that it is the debrief, where everyone has a chance to speak and reflect, that the real learning occurs and lasting confidence, both in the process of organ donation and individuals capacity to deliver it, is gained. 9. Actors are Amazing, Use Them Our actors are the most powerful force for change in the day and the key element that makes the story feel real and emotionally engaging. Do not just dress up other health care professionals and call them family members, they will be unable to present realism. Professionalism has a price to be sure, but you get what you pay for. We invite our actors into every debrief and always ask them to reflect on what they were thinking and feeling in the scenario before. When the actors say they felt confused or hopeful (when there was meant to be clarity over the inevitability of death), nothing you say as course faculty, will ever be as impactful. Likewise there is a tendency as course faculty, to become too narrow in your belief about how things should be said to a family. Sometimes, our actors (and our participants!), teach us that every family is different and those words and that approach, may be just right for that family. 10. On the Day Treat your Participants like Adults, Before That Like Children Simulation is adult learning at its highest. Treat your participants and observers like adults. Except before they attend. Then they will need to be treated like children. The majority will never read anything you send them. If you tell them to come dressed as per what they wear to work, expect at least one or two to come dressed in jeans or a mini-skirt. Unfortunately, you must also expect that some simply will not turn up, sometimes without even sending in an apology. Alas, it is common in our society for people to not appreciate something if it is free (even though the course is not free and our donation committee pays 3,500 per simulation day). If anyone works out how to solve Top Tip 10 we would love to know. D Gardiner Deputy National Clinical Lead for Organ Donation NHSBT dalegardiner@doctors.net.uk < 20 Blood and Transplant Matters September 2015