ERC #RESUS2020 Feedback

Last week was the ERC #RESUS2020 of which we were included as part of their Survivorship day. We know people want to meet-up and learn from each other and during these COVID times, that’s not so easy.

The online conference is the next best thing and this was a first for the European Resuscitation Council and us, so we’d love to hear what you thought – even if you didn’t attend.

Thanks for your help, it’s much appreciated.

ERC Post Resus Guidelines Help

Being a survivor is a privilege, for the most part of human history, people like us have not previously existed. It was not until later part of the 20th century that science and medicine came together to be able to start saving cardiac arrest sufferers in substantial numbers.

In the late 1980’s a consensus for collaboration was growing amongst physicians and so in 1989 the European Resuscitation Committee (ERC) was created. In 1992 the International Liaison Committee on Resuscitation (ILCOR) was formed to take the message worldwide. These organisations exist to evolve the standards that were being implemented for CPR and the Chain of Survival and ultimately save more lives through resuscitation.

As well as bringing people together for events like the recent #RESUS2020 conference, the ERC also produces guidelines at intervals of approximately 5 years. They are accepted in most of Europe as the standard of care and the reference for clinical practice.

In essence, it is these guidelines that have shaped the health systems of Europe so that people like you and I can survive an event that would have previously ended up with an unhappy ending.

These guidelines are not perfect but are the best understanding of the science and knowledge that has credible evidence, and as such, it evolves as these do.

SCA UK was borne out of a meet-up in a pub in February 2015, which coincidentally was the same year the last guidelines were published. When we gathered in that pub, we were there as strangers but were pulled together because we all had essentially the same experience of what I now know as the Chain of Survival. The links of the chain were executed such that the survivors amongst us became that, survivors; and the partners, family members became life-savers. We have the guidelines to thank for that. However, it was a common theme that our experience since leaving the hospital was at some odds to the previous excellent pre-discharge care. 

It was through the formation of the SCA UK facebook support group that it became apparent that our experiences weren’t just isolated cases and that we had come together because we wanted a moan. There were numerous others going through many of the same ruminations and sequelae, and it seemed that there had been a common lack of focus on the last link in the Chain of Survival – “Restore quality of life”.

And so, 5 years on, the draft of the 2020 guidelines have just been revealed, and I believe for the first time in their 28 years, are open for public comment – which is where you come in

Whilst these guidelines are probably going to be too late to make a difference to you directly, you can pass on your luck and expertise of the “Life After Cardiac Arrest”. Feeding back from the perspective of someone who has that lived experience is invaluable to the professionals in helping them shape the future care of our peers. Let’s use this chance!

You can help by reading the relevant documentation and feeding back via the survey form. Time is tight though, as we only have until the 5th November 2020.

The guidelines are a hefty volume but helpfully the authors have broken it down separate documents focusing on various aspects of resuscitation. The Post-Resuscitation document is quite lengthy in itself and contains much that is perhaps best left to the professionals to comment on. However, it does contain a section on the “Long-term outcome after cardiac arrest”. This is very much of interest to us, as survivors, partners and families as this area of care are what has been somewhat lacking for many. 

I’ve extracted out the aforementioned long-term outcome section into a separate document for your ease of reading. 

However, you can download the full Post-Resuscitation document and the others that make up the guidelines for public comment from the CPR Guideline website

Please don’t forget to leave feedback via Survey Monkey, even if you agree with the contents.

#RESUS2020 Survivorship Programme Roll Call

Hopefully, you are well aware that the European Resuscitation Council inaugural Survivorship day is on Saturday 24th October.

There will be 3 hour-long sessions with a spectacular line-up of speakers and panellists who should not be missed! Especially as you don’t need to leave the comfort of your own home and it will cost you nothing, zip, zero, nada.

Each session will be streamed live and will feature a summary of the pre-recorded presentations and then a moderated discussion with the speakers and expert panel members. Those joining to watch live can ask questions during the sessions.

All the presentations will be pre-recorded (~10 mins each) and available to watch before or after the scheduled times. To make the most of the live sessions you are strongly encouraged to watch the presentation videos before the session start time (links will be made available when we get them).

To see the full programme and how to register go to the #RESUS2020 event page.

Roll Call

A great selection of speakers and panellists has been assembled for the survivorship day and you can find out more about them below. Click on the “+” symbol to expand the bio’s.

Session 1 – The Survivorship Story

Dr Kelly Sawyer (US), Assistant Professor, SCA survivor

Kelly N. Sawyer, MD, MS

Dr Sawyer is possibly unique in that she is a trained medical doctor and also a cardiac arrest survivor. This means she has great insight into both sides of a patients journey and earlier this year was the lead author on the scientific statement from AHA on Sudden Cardiac Arrest survivorship. She completed her residency in Emergency Medicine at Allegheny General Hospital in 2009 and went on to a fellowship in Emergency Cardiac Care and Resuscitation at Virginia Commonwealth University. In 2011 she finished her fellowship, along with a Masters of Science in Clinical Research and Biostatistics. She subsequently spent 5 years at Beaumont Health in Royal Oak, MI, where she mentored young investigators through scholarly work and coordinated a multidisciplinary post-cardiac arrest team to enhance collaborative and consistent care in-hospital and after discharge. Currently, she is faculty at the University of Pittsburgh School of Medicine, with a primary scholarly focus on long term outcome and survivorship after cardiac arrest.

Dr Katie Dainty (CAN), Bystander Support Network

The forgotten patient – Sudden Cardiac Arrest UK

Dr Dainty is a qualitative and mixed methods scientist and is the Research Chair in Patient-Centred Outcomes at North York General Hospital, Toronto. She is also a passionate advocate for bystanders in a cardiac arrest scenario – “the forgotten patient“. She is currently undertaking research into understanding survivorship following Sudden Cardiac Arrest from both the patient and family perspectives and is also a co-founder of the Canadian organisation Bystander Support Network which aims to support people who have witnessed someone having a cardiac arrest, who have performed CPR or who have survived a cardiac arrest.

Sue Hampshire, Resuscitation Council UK

Staff | Resuscitation Council UK

Sue Hampshire is the Director of Clinical and Service Development and has as worked for the Resuscitation Council UK since 2012. Her role includes the management of Resuscitation Council UK’s courses and involvement in related projects. Since taking up her post she has worked on the development and improvement of new and existing courses. Sue is involved in the organisation of Resuscitation Council UK events and has organised resuscitation training sessions at the British Cardiac Society and Royal College of Paediatrics and Child Health conferences. Before joining RCUK, Sue worked as a Senior Resuscitation Officer at the Oxford University Hospitals NHS Trust.

Professor William Toff, Cardiologist

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Professor Toff is a lecturer in Cardiology at the University of Leicester with an honorary clinical appointment at the University Hospitals of Leicester NHS Trust. His main clinical and research interests are in the field of cardiac arrhythmia and implanted cardiac rhythm management devices. He has extensive experience in health technology assessment and cardiovascular clinical trials, and he served as the founding Director of the Leicester Clinical Trials Unit.  He is also the founder of the Heartwize charity that provides AED’s and CPR training throughout schools in Leicestershire and Essex.

Paul Swindell, SCA survivor

Before his cardiac arrest in 2014, Paul worked as a freelance IT consultant. After arranging a meet-up of SCA survivors and lifesavers he set up the peer support group Sudden Cardiac Arrest UK. He spends time supporting the group and creating resources to help other survivors and lifesavers including this website, publishing the group’s leaflet, 2 volumes of “Life After Cardiac Arrest” book and has hosted 50 episodes of the podcast “Life After Cardiac Arrest“.  He also assists Dr Keeble’s CARE study presentations by giving a patients perspective on life after cardiac arrest.

Stuart Menzies, Lifesaver

Stuart is a senior police officer in the Scottish Police Force and is also a lifesaver. In 2016 he performed CPR on his wife when she experienced an SCA in a local supermarket. Despite having previous experience of performing CPR, doing it on a loved one turned out to be a quite different experience. Stuart is an active member of SCA UK and helps other lifesavers and family members going through the post-event rollercoaster. He has contributed to the SCA UK blog and the second volume of the “Life After Cardiac Arrest” book. He has also been a guest on the “Life After Cardiac Arrest” podcast.

Dr Kirstie Haywood, Associate Professor

Meet the Supporters

Dr Haywood is a researcher at the Warwick Medical School specialising in the challenges of patient-reported outcomes (PROMS). She has recently started work on a study to cover Cardiac Arrest Survivors. Well-developed patient-reported outcome measures provide valid and reliable assessments of health and treatment outcome, informing the assessment of disease burden, healthcare evaluation, and decision-making for health professionals, managers and patients, and hence contributing significantly to health research and service provision. In early 2020 she published a study “Trapped in a disrupted normality: Survivors’ and partners’ experiences of life after a sudden cardiac arrest” which looked to improve understanding of the consequences of surviving a cardiac arrest.

Dr Tom Keeble, Consultant Cardiologist

Dr Keeble is an interventional cardiologist with a specialist research interest in cardiac arrest and has conducted and published a number of studies in this field including targeted temperature management and neuro-prognostication. In 2013 he set up the UK’s first Care After REsuscitation (CARE) clinic in the Essex Cardiothoracic Centre in association with Anglia Ruskin University. He now understands a huge unmet need within the follow-up and service provision for survivors of cardiac arrest and their families. He has recently co-founded the International Taskforce for Cardiac Arrest Recovery (ITCAR) to try and improve evidence and guidance for patients and deliver a better follow up and rehabilitation service for these vulnerable patients; for which cardiac rehab teams will be at the heart. He has also created the “Life After Cardiac Arrest” video and is a regular guest on the similarly named, “Life After Cardiac Arrest” podcast.

Session 2 – Survivorship Challenges

Professor Hand Friberg (SWE), Intensive Care

Hans Friberg

Hans Friberg, MD, Ph.D., EDIC is a Professor of Anesthesiology and Intensive Care Medicine at Lund University, Sweden, and a senior consultant at Skåne University Hospital, Malmö, Sweden. Dr Friberg did his PhD-work at the Laboratory for Experimental Brain Research at Lund University, where he studied brain injury and mitochondrial dysfunction in rodent models of global and focal brain ischemia.

Dr Friberg’s present research area is post-resuscitation care and temperature management after cardiac arrest. He has published some 200 scientific papers. He is the senior author of the Targeted Temperature Management after cardiac arrest trial (TTM-trial) and also a senior author of the ongoing TTM2-trial. Dr Friberg is an initiator of the Hypothermia Network which has become the International Cardiac Arrest Registry (INTCAR), a transatlantic research collaboration with more than 6000 registered patients. He is the initiator of SWECRIT, a large regional biobank for critically ill patients in the ICU. Dr Friberg is a co-author of the ERC guidelines on post-resuscitation care and serves on the Board of the Swedish Resuscitation Council.

Dr Marco Mion (UK/ITA), Clinical Psychologist

Dr Mion works at the Essex Cardio-Thoracic Centre clinic for out of hospital cardiac arrest survivors and their families, and additionally as a stroke and community neuropsychologist in central London. I have been involved with CARE (Care After Resuscitation) since 2016. He received his MSc in General and Experimental Psychology at the University of Milano-Bicocca (Italy) in 2005. He then completed a PhD in Neuroscience at the University of Modena (Italy) in 2010, spending a year in the Department of Clinical Neuroscience at Addenbrooke’s Hospital (Cambridge, UK) as a Visiting PhD student. He has been working for the NHS since 2011 in different settings: memory services, hyperacute and acute stroke units and inpatient/community neuro-rehabilitation teams.

Gisella Lilja (SWE), Occupaptional Therapist

GIsela Lilja

Gisella is an occupational therapist clinically working at the division of neurology and rehabilitation medicine in Lund at an out-patient Stroke rehabilitation facility. My main research focus is the long-term outcome and cognitive impairment after out-of-hospital cardiac arrest. In the large TTM-trial, we collected extensive information about survivor’s health-related quality of life, functional outcome, cognitive performance, psychological well-being and ability to participate in daily life. We also assessed relative’s health-related quality of life and feelings of burden. The aim is to describe both long-term outcomes of cardiac arrest survivors in general, but also to identify a clinically helpful screening model to easily detect survivors in risk for a less successful recovery, and in need of extra support and rehabilitation.

Dr Tom Keeble, Consultant Cardiologist

Dr Keeble is an interventional cardiologist with a specialist research interest in cardiac arrest and has conducted and published a number of studies in this field including targeted temperature management and neuro-prognostication. In 2013 he set up the UK’s first Care After REsuscitation (CARE) clinic in the Essex Cardiothoracic Centre in association with Anglia Ruskin University. He now understands a huge unmet need within the follow-up and service provision for survivors of cardiac arrest and their families. He has recently co-founded the International Taskforce for Cardiac Arrest Recovery (ITCAR) to try and improve evidence and guidance for patients and deliver a better follow up and rehabilitation service for these vulnerable patients; for which cardiac rehab teams will be at the heart. He has also created the “Life After Cardiac Arrest” video and is a regular guest on the similarly named, “Life After Cardiac Arrest” podcast.

Donna Malley, Occupaptional Therapist

This image has an empty alt attribute; its file name is Donna-M-2-2-e1563115852262-300x278.jpg

Donna has over 25 years’ experience working in the NHS with people following an acquired brain injury. She is currently Chair of the Royal College of Occupational Therapists Specialist Section Neurological Practice. She joined the Oliver Zangwill Centre for Neuropsychological Rehabilitation in 1998 where she developed her interest in fatigue, completing an MSt and co-producing the Headway booklet Managing Fatigue after Brain Injury. She has also contributed to The Brain Injury Rehabilitation Workbook (2016) and Neuropsychological Rehabilitation; The International Handbook (2017) and co-written a paper Fatigue after Brain Injury: a model to guide clinical management (2014; ACNR). Fatigue is clinically important and commonly misunderstood. This presentation will provide an overview of the current evidence base regarding factors contributing to persistent fatigue. A clinical model will be used to support understanding and management. The need for understanding an individual’s experience, the involvement of family and others, peer support and self-management techniques will be discussed.

Professor Barbara Wilson, Clinical Neuropsychologist

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Barbara has worked in brain injury rehabilitation for over 40 years. She has published 27 books, over 300 articles and chapters and 8 neuropsychological tests. She has won many awards for her work including an OBE from the Queen in 1998, for services to rehabilitation; five-lifetime achievement awards, honorary degrees from The Universities of East Anglia and Cordoba, Argentina. She is the editor of the journal “Neuropsychological Rehabilitation” which she founded in 1991. In 1996 she established the Oliver Zangwill Centre for Neuropsychological Rehabilitation. The UK Division of Neuropsychology has named a prize after her, the ‘Barbara Wilson prize for distinguished contributions to neuropsychology’. She is a Fellow of The British Psychological Society, The Academy of Medical Sciences and The Academy of Social Sciences. She is an honorary professor at the University of Hong Kong, Sydney and East Anglia.

Dr Rosalind Case (NZ/AUS), Clinical Psychologist

Dr Rosalind Case (@DrRosalindCase) | Twitter

Dr Rosalind Case is a clinical psychologist and Adjunct Research Fellow in the Department of Epidemiology and Preventive Medicine. She leads a programme of research investigating the neurocognitive and psychosocial outcomes of cardiac arrest survivors and their families, with a focus on translational outcomes in the development of post-arrest clinical services. She is a founding member of the International Taskforce for Cardiac Arrest Recovery (ITCAR).

Professor Karen Smith (AUS), Ambulance Victoria

Prof Karen Smith (@karensmith_av) | Twitter

Professor Smith is the Director of Research and Evaluation at Ambulance Victoria, Australia. She is an epidemiologist with extensive experience in pre-hospital research and clinical trials. Karen completed a PhD in 2003 at the Department of Epidemiology and Preventive Medicine,  Monash University. She was the recipient of an NHMRC PhD scholarship and an NHMRC  Post-Doctoral Fellowship. Karen has retained an Honorary Senior Lecturer position at the Department of Epidemiology and Preventive Medicine.  She is also an Adjunct Associate Professor – Emergency  Medicine Discipline at the University of Western Australia. In addition, she is a member of the Falck Foundation Medical Advisory Committee, which supports and promotes pre-hospital research.

Karen co-founded and chairs the Victorian Cardiac Arrest Registry  (VACAR) which contains information for all patients in Victoria, who suffer cardiac arrest and receive ambulance attendance. This registry is regarded internationally as a key OHCA quality assurance activity and fosters a large research program and international collaboration. Karen also co-founded the  Victorian State Trauma Registry (VSTR) at Monash University and remains on the  Steering Committee.  In 2012 she won the  Ambulance Victoria Inaugural CEO Award for Leadership Excellence.

Session 3 – Global Survivorship Support

Professor Karen Smith (AUS), Ambulance Victoria

Prof Karen Smith (@karensmith_av) | Twitter

Professor Smith is the Director of Research and Evaluation at Ambulance Victoria, Australia. She is an epidemiologist with extensive experience in pre-hospital research and clinical trials. Karen completed a PhD in 2003 at the Department of Epidemiology and Preventive Medicine,  Monash University. She was the recipient of an NHMRC PhD scholarship and an NHMRC  Post-Doctoral Fellowship. Karen has retained an Honorary Senior Lecturer position at the Department of Epidemiology and Preventive Medicine.  She is also an Adjunct Associate Professor – Emergency  Medicine Discipline at the University of Western Australia. In addition, she is a member of the Falck Foundation Medical Advisory Committee, which supports and promotes pre-hospital research.

Karen co-founded and chairs the Victorian Cardiac Arrest Registry  (VACAR) which contains information for all patients in Victoria, who suffer cardiac arrest and receive ambulance attendance. This registry is regarded internationally as a key OHCA quality assurance activity and fosters a large research program and international collaboration. Karen also co-founded the  Victorian State Trauma Registry (VSTR) at Monash University and remains on the  Steering Committee.  In 2012 she won the  Ambulance Victoria Inaugural CEO Award for Leadership Excellence.

Dr Benjamin Abella (US), Director, Center for Resuscitation Science

Dr Abella is a Director at the Center for Resuscitation Science and a Professor of Emergency Medicine at the University of Pennsylvania. He studies sudden cardiac arrest, specifically, projects within his clinical research team include the evaluation of CPR and resuscitation performance, testing new methods to teach CPR in the community, prognostication of neurologic outcomes after cardiac arrest, and methods to improve the application of therapeutic hypothermia. Dr Abella is also the developer and Medical Director of a novel training course for post-arrest care and targeted temperature management (TTM), the Penn TTM Academy.

Dr Abella has published over 200 scholarly works, reviews and monographs in numerous professional journals including NEJM, JAMA and Circulation, as well as textbook chapters on cardiac arrest and resuscitation. He is Co-Chair of the global Resuscitation Science Symposium and has participated in developing international CPR guidelines. He has won a number of honours for his research, clinical care in the Emergency Department and his teaching of residents and medical students, and has lectured widely on the topics of cardiac arrest and post-arrest treatment. The investigative work of Dr Abella’s team is supported by funding from the NIH and PCORI, as well as industry sources.

Paul Swindell, SCA Survivor

Before his cardiac arrest in 2014, Paul worked as a freelance IT consultant. After arranging a meet-up of SCA survivors and lifesavers he set up the peer support group Sudden Cardiac Arrest UK. He spends time supporting the group and creating resources to help other survivors and lifesavers including this website, publishing the group’s leaflet, 2 volumes of “Life After Cardiac Arrest” book and has hosted 50 episodes of the podcast “Life After Cardiac Arrest“.  He also assists Dr Keeble’s CARE study presentations by giving a patients perspective on life after cardiac arrest.

Dr Kelly Sawyer, Assistant Professor, SCA Survivor

Kelly N. Sawyer, MD, MS

Dr Sawyer is possibly unique in that she is a trained medical doctor and also a cardiac arrest survivor. This means she has great insight into both sides of a patients journey and earlier this year was the lead author on the scientific statement from AHA on Sudden Cardiac Arrest survivorship. She completed her residency in Emergency Medicine at Allegheny General Hospital in 2009 and went on to a fellowship in Emergency Cardiac Care and Resuscitation at Virginia Commonwealth University. In 2011 she finished her fellowship, along with a Masters of Science in Clinical Research and Biostatistics. She subsequently spent 5 years at Beaumont Health in Royal Oak, MI, where she mentored young investigators through scholarly work and coordinated a multidisciplinary post-cardiac arrest team to enhance collaborative and consistent care in-hospital and after discharge. Currently, she is faculty at the University of Pittsburgh School of Medicine, with a primary scholarly focus on long term outcome and survivorship after cardiac arrest.

Dr Sachin Agarwal (US), Assistant Professor of Neurology

PTSD After Cardiac Arrest Predicts More Heart Trouble | Columbia University  Department of Neurology

Dr Agarwal is an assistant professor of neurology and neurocritical care at Columbia University Irving Medical Center and founder of the nation’s first NeuroCardiac Comprehensive Care Clinic dedicated to cardiac arrest patients with neurologic injury. He co-directs the Neuro-Research Consortium and the International Cardiac Arrest Registry (INTCAR) and is the principal investigator of a longitudinal cohort study to identify novel targets for reducing cognitive, psychological, and secondary cardiovascular risk in survivors of cardiac arrest. He serves on the American Heart Association’s Council on Cardiopulmonary, Critical Care, and Resuscitation and the Society of Critical Care Medicine’s THRIVE initiative, a national and an international collaborative effort for peer-to-peer support for ICU patients. In addition to participating in the AAN Emerging Leaders’ Forum, he is a faculty advisor for the AAN Student Interest Group in Neurology and serves on the AAN’s Undergraduate Education Subcommittee.

Dr Vicky Joshi (UK/DEN), Physiotherapist

Vicky comes from England and has a Masters degree in physiotherapy and works in Denmark at the Knowledge Center for Rehabilitation and Palliation. She is affiliated with the Rehabilitaion Group and worked on the “Exploring life after cardiac arrest” project. She is also involved with the Danish Cardiac Arrest registry and is secretary of the DANCAS network (Danish Cardiac Arrest of Survivorship network).

Gisella Lilja (SWE), Occupaptional Therapist

GIsela Lilja

Gisella is an occupational therapist clinically working at the division of neurology and rehabilitation medicine in Lund at an out-patient Stroke rehabilitation facility. My main research focus is the long-term outcome and cognitive impairment after out-of-hospital cardiac arrest. In the large TTM-trial, we collected extensive information about survivor’s health-related quality of life, functional outcome, cognitive performance, psychological well-being and ability to participate in daily life. We also assessed relative’s health-related quality of life and feelings of burden. The aim is to describe both long-term outcomes of cardiac arrest survivors in general, but also to identify a clinically helpful screening model to easily detect survivors in risk for a less successful recovery, and in need of extra support and rehabilitation.

Feature Image by skeeze from Pixabay