phosphorus and potassium Where can I get more information? GFR (Glomerular Filtration Rate) A Key to Understanding How Well Your Kidneys Are Working About Chronic Kidney Disease A Guide for Patients and Their Families Diabetes and Your Eyes, Heart, Nerves, Feet and Kidneys Winning the Fight Against Silent Killers: High Blood Pressure and Diabetes Winning the Fight Against Silent Killers: High Blood Pressure and Diabetes What You Need to Know About Urinalysis www.kidney.org 15 n Treating kidney disease early n Treating kidney failure with transplantation or dialysis. There are two ways to learn about the many free resources available to you: n Call the National Kidney Foundation at 800.622.9010. n Visit the National Kidney Foundation website (www.kidney.org/store). (All publications are free, but there is a limit of five per person.) Becoming an educated patient is very important to being healthy! National Kidney Foundation 30 East 33rd Street New York, NY 10016 800.622.9010 www.kidney.org © 2010 National Kidney Foundation, Inc. All rights reserved. 11-10-0283-EBA National Kidney Foundation The National Kidney Foundation (NKF) is dedicated to preventing kidney diseases, improving the health and well-being of individuals and families affected by these diseases and increasing the availability of all organs for transplantation. With local offices nationwide, the NKF provides early detection screenings and other vital patient and community services. The Foundation conducts extensive public and professional education, advocates for patients through legislative action, promotes organ donation and supports kidney research to identify new treatments. In 2009 NKF launched a groundbreaking multifaceted collaborative initiative to “END THE WAIT!” for a kidney transplant in the United States in 10 years by using proven strategies to eliminate barriers to donation and institute best practices across the country. The NKF relies on individual and corporate donations, foundation and The publication of these standards is an initiative of the Sickle Cell Society and the UK Forum for Haemoglobin Disorders. All the writers and editors donated their time and expertise and received no remuneration or benefits in kind for their contributions. An unrestricted educational grant was received from Novartis which supported costs of production and publication. They have had no academic or editorial input into this document. Clinical disclaimer The content of the document is evidence based, as far as available evidence allows, and reflects the experience and opinions of its authors. However they, the Sickle Cell Society, and the UK Forum on Haemoglobin Disorders can take no responsibility for clinical problems arising in individual patients managed in line with the contents. New evidence made available since publication should be taken into account when using this document. The Sickle Cell Society, UK Registered Charity No. 1046631 The Sickle Cell Society can be contacted at: Registered address: 54 Station Road London, NW10 4UA Telephone: 020 8961 7795 020 8961 8346 email: info@sicklecellsociety.org Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 11 Foreword As Chair of the Sickle Cell Society I am honoured to serve patients, and their families, and work with the caring professionals in the National Health Service and beyond. Patient Reported Experience Measures (PREMs) by Collaboration for Leadership in Applied Health Research and Care (CLAHRC), National Institute of Health Research (NIHR), Picker Institute and the Sickle Cell Society, have revealed significant concerns over the treatment, care, and the quality of service patients receive, which varies according to postcode and provider (Picker Institute Europe, 2015). Research into this condition is increasing however and Clinical trials are providing real hope for improving treatments and cures. If you are reading this Foreword, I would like to thank you for making a great start, but from this outset, I encourage you to read the ‘Standards for Clinical Care of Adults with Sickle Cell Disease’ to the end. Learn it, share it, and practice it, until its use is embedded at the heart of treatment and care for people suffering the chronic lifelong medical conditions of Sickle Cell Disorder. These conditions generate enduring effects disproportionately exposing patients to adverse economic and social factors that contribute to health inequalities, (World Health Organization (WHO), 2011). The aim of the Standards is to reduce levels of morbidity and mortality and improve the experience of all haemoglobinopathy patients by reducing these inequities and improving timely access to high quality expert care. The Standards comprise the components that characterise Sickle Cell Disorder, and the various practices and people, needed to care for patients. All stakeholders of the condition should make the Standards a key reference document; patients, carers, haematologists, commissioners, general practitioners, consultants, junior doctors, nurses, specialist nurses, accident and emergency staff, ambulance staff and paramedics, pathologists, pathophysiologists, psychologists, nutritionists, counsellors, support groups, academics, senior NHS and public health policy makers, researchers and pharmaceutical companies involved in sickle cell research and trials. It is