The following patients and professionals are working on developing KPIN on a part time basis* or have graciously given their time to the network.
Mr Andy Henwood, KPIN Patient Involvement Facilitator (KPIN Co-Chair)*
Andy is a transplanted Kidney Patient after spending 4 years on Haemodialysis. Andy has been a patient Representative at his hospital unit as well as a patient lead in a number of regional and national programmes; the latest being the Health Foundation Funded Scaling Up programme called Shared Haemodialysis Care. “I am a keen advocate of patients having a greater understanding and involvement in their care, this includes working with health care professionals to help improve our quality of life and their quality of work. We are now creating a patient involvement network where kidney patients and carers with experience, can share their engagement and involvement experiences and learn from each other as well as promote and encourage best ‘co-produced’ practices”
Ms Holly Loughton, KPIN Patient Involvement Facilitator*
After receiving a kidney transplant in 2016 Holly began to develop a real interest in how she could use her skills and abilities to make a positive contribution to the renal community, ranging from charities and patient-led support groups, to NHS England and other healthcare organisations. Over the last several years she have done this in both a voluntary and professional capacity.
Holly is pleased to be part of KPIN because she remembers how challenging and uncertain her own first steps into patient involvement were. She feels she lacked confidence and knowledge of what to expect, and certainly wishes she’d had access to a network of other likeminded patients for mutual support, encouragement, and signposting to relevant opportunities.
Ms Tess Harris, PKD Charity
Tess is CEO of the Polycystic Kidney Disease (PKD) Charity. She inherited PKD from her father along with 3 siblings; she’s currently on daily peritoneal dialysis awaiting a transplant. She’s a patient representative in a number of research programmes and networks in the UK and internationally, including the UK ADPKD and ARPKD Clinical Study Groups, ERKNet (European Kidney Reference Network), TrainCKDis, DRUGtrain and SONG (Standardised Outcomes in Nephrology). “I’m keen to encourage more patients and family members to get involved in improving kidney research and kidney services. It’s critical in making a difference to the lives of people with kidney disease. I want help people feel supported as they learn and develop confidence about patient involvement.”
Professor Paula Ormandy, University of Salford (KPIN Co-Chair)
Paula is a Professor in Long Term Conditions Research, originally a renal nurse now a health service researcher. Her research interests include self-management, patient education and information provision using digital and social media. She is a founding member of the Kidney Information Network (gmkin.org.uk) and co-chair KPIN. “The KPIN network provides new and exciting opportunities for people managing chronic kidney disease and carers so they can influence and improve the quality of services and research.”
Professor Nicki Thomas, London South Bank University
Nicki is a Kidney Nurse and Professor of Kidney Care at London South Bank University. She has an honorary nurse consultant post at Barts Health NHS Trust where she has been involved in developing and evaluating the East London Community Kidney Service and runs kidney care courses for specialist nurses. “I am passionate about making sure that patient and public involvement in quality improvement and research is both meaningful and routine.”
Ms Melanie Dillon, KPIN Administrator (Kidney Care UK)*
Melanie is the Kidney Care UK Patient Information Coordinator and provides part-time administrative support for the Kidney Patient Involvement Network (KPIN).
Prior to this she worked for the Renal Association as the Operations Officer for the Rare kidney Disease Registry (RaDaR). She also previously worked at Birmingham Children’s Hospital as a research assistant.
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