NKF Virtual Patients' Event 2022 Annual Patient Event 2022 - Watch again Last year our online Patients’ Event was a major success, with a variety of guests, including professional and patient speakers. This year we will continue to have our event online, from a survey circulated within our Kidney Life magazine, our supporters decided that we should make the day an online event again this year, due to COVID-19. We aim to bring this event back face to face again in 2023.Thanks to our sponsors and To watch the whole event again, please click below... NKF Patient event chairman's introduction from Jim Higgins Please click on the photo below to watch the presentation: 10.10 - 10.35 BISTRO (Bio-Impedance Spectroscopy to Maintain Renal Output) Study, NIHR Devices for Dignity Simon Davies is a Consultant Nephrologist at the University Hospital of North Midlands and Professor of Nephrology and Dialysis Medicine in the Faculty of Medicine and Health Sciences at Keele University, UK. Please click on the photo below to watch the presentation: 10.35 - 11.00 Transplant Patient JourneyHattie Stiff is 25 years old, a Social Media Manager and NKF Ambassador who was born without fully formed kidneys. "Kidney disease has always been a part of my life, and after my second transplant last year, I really wanted to bring awareness to the fact that anyone of any age can have kidney disease! I currently run my Instagram account, @hattiee_amelia, to show the daily life behind kidney disease and post-transplant life to try and support others going through the same thing. If it even makes a difference to one person and makes them feel better about the situation they're going through, then I'll be happy!" Please click on the photo below to watch the presentation: 11.00 - 11.45 NHS England - Renal Services Transformation Programme (RSTP) with Dr Albert Power, Dr Smeeta Sinha, Dr Nicholas Torpey and Lydia Ball Dr Albert Power is a Consultant Nephrologist and Research Lead at the Richard Bright Renal Unit, Southmead Hospital, Bristol. He is the National Clinical Advisor for Dialysis Therapies in the Renal Service Transformation Programme for England and Lead for the South-West Renal Network. He has a specialist interest in cardiovascular disease affecting people with chronic kidney disease and has a wide portfolio of dialysis research with particular focus on stroke. Dr Smeeta Sinha is a National Clinical Advisor for Chronic Kidney Disease (CKD). She is also a Northern Care Alliance Research & Innovation Deputy Director.Dr Nicholas Torpey is a Transplant Nephrologist in Cambridge and Clinical Director of the Cambridge Transplant Unit – which performs kidney, pancreas, liver and intestinal transplants. As well as kidney transplantation, the unit has considerable experience of managing renal disease in non-renal transplant recipients – both at Addenbrooke’s and at the Royal Papworth Hospital. He is currently a National Clinical Advisor for Transplantation to the Renal Services Transformation Program, and Treasurer of the British Transplantation Society. Lydia Ball, is a National Programme of Care Manager, and has over 17 years’ experience of working with multidisciplinary teams across the NHS, Charity and Pharma sectors. A patient centric leader, Lydia has significant experience in innovating and modernising healthcare services. Lydia commenced her role as National Programme of Care Manager and Lead Commissioner for the Renal Services Clinical Reference Group in May 2022.Please click on the photo below to watch the presentation: 12.00 - 12.45 Dialysis Decision Making in Advanced CKD – Examining the Experience of BAME Patients in the UKDr Kerry Rosenberg "I am a renal registrar, currently working at the Royal Free Hospital. My research interests are in kidney treatment decision making, supportive care and health inequalities and access to care. I live in South East London with my husband and Boston Terrier, Beans, and I am a keen runner in my spare time.” During Dr Kerry Rosenberg's allocated speaking time she covered the following: The diversity of the renal population in the UK – figures from the UKRR Annual Report 2019. The importance and complexity of choosing a treatment pathway in advanced kidney disease – including the added challenges of helping an older and more frail person to choose the right treatment for them. The existing evidence looking at dialysis decision making in BAME populations – this is minimal, and largely focused on palliative care/advanced care planning decisions rather than dialysis. Some results and insights from her local project at the Royal Free – currently in progress. A brief outline of the larger project that she hopes to pursue as a PhD. Please click on the photo below to watch the presentation: 12.45 - 13.10 Renal Care in a Pandemic Versus EndemicDr Praveen Jeevaratnam is a Nephrologist who commenced his consultant post in 2013 at the Lister Hospital East North Herts NHS Trust (ENHT). His training was across the pan North Thames renal training centres, with a research degree in rare lysosomal storage disorders completed at the UCL/Royal Free Hospital. His clinical work and expertise is in renal access intervention and maintenance for haemodialysis patients, and he runs the renal access multidisciplinary service at ENHT with the vascular team and interventional radiologists at ENHT. He currently is the Clinical Director for renal services at ENHT, which provides tertiary renal services to Hertfordshire, Bedfordshire and West Essex. Please click on the photo below to watch the presentation: 13.10 - 13.35 Patient Experience with Home Haemodialysis and Home Peritoneal Dialysis Dana Homes lives in Doncaster, South Yorkshire. Dana is a kidney patient at the Northern General Hospital in Sheffield. Diagnosed with Chronic Kidney Disease (CKD) IGNa in 2011. She managed to control her CKD up until October 2020 and then her treatment for CKD was in the form of haemodialysis. Dana is awaiting her first kidney transplant and is active on the deceased transplant list. Dana started her working life as a finance clerk working for British Rail when she was just 16 and worked her way up to Accounts Payable Supervisor, unable to get any further in that department she made a sideways move to Recruitment, and this really was the start of her career. Alongside her employment she has also started a company called Quikk Designs, a range of long and short sleeved lightweight stretch zip tops that provide access to necklines, picc/fistulas and allow vitals to be checked via zipped access under arms so that patients can keep warm and look stylish. These have been developed for male and female wearers and come in a range of sizes and colours. When Dana started her dialysis journey it was all very new and extremely scary which was the fear of the unknown and would have benefitted so much from being able to talk to someone who had gone through it. Dana became one of our voluntary NKF Peer Supporters and is a real advocate of home dialysis. Dana gets involved in as much as she can in the way of surveys for research, as well as interviews with kidney charities which have lead to her being on the BBC radio and TV to spread the awareness of cost of living for patients who receive treatment at home. She hopes that she can give comfort to all the patients that she speaks to in sharing her experiences and the knowledge she has learnt that she understands as she has been on the same journey.Patricia Gooden lives in Waltham Abbey, Essex. Patricia is a kidney patient at the Royal Free Hospital in London. Diagnosed with Chronic Kidney Disease (CKD) in 2010. This followed years of treatment for diabetes which started off during pregnancy in 1993. Her treatment for CKD was in the form of Peritoneal Dialysis. Patricia had a successful kidney transplant in February 2014. Patricia has worked in public sector housing for more than twenty five years and carried out a variety of duties and was the Service Manager responsible for a team which included Senior Officers, Tenancy Officers, Admin Officers, Caretakers and Trainees. She is an active Board Member of Circle Housing Association which has 70,000 homes, 300,000 customers, 2,300 staff. Patricia is currently the Secretary of the The Royal Free Hospital Kidney Patients Association (RFHKPA), a Charity that represents the needs of kidney / transplant patients registered at the Royal Free Hospital. All committee members are volunteers. She attends their monthly meetings where she accurately records and distributes the Minutes and all relevant communications to ensure the smooth running of the Charity. Please click on the photo below to watch the presentation: Booking for this event has now closed.