essential they provide consistent best practice services through integrated multidisciplinary teams with systematic approaches and pathways led by the public patient voice. The Standards is clear on what to deliver, how to apply and manage delivery, who delivers, and where change and transformation is needed and why. I commend the Standards to all medical professionals especially those working with sickle cell patients. I encourage the NHS and others to take up the Standards and widely disseminate it, supporting training and education around the standard as a requirement for changing the performance of our professionals working in primary, clinical, and social care. Kye Gbangbola, MBA FCIOB FIEMA EurBE GACSO LCSAP Chair, Sickle Cell Society Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 12 Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 13 Statements of support Statements of support Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 14 Statements of support Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 15 Statements of support Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 16 Statements of support Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 17 Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 19 Chair’s introduction The first edition of the ‘Standards for Clinical Care of Adults with Sickle Cell Disease in the UK’ (Sickle Cell Society, 2008) has certainly been instrumental in improving care for patients with sickle cell disease (SCD). Haemoglobinopathies have been commissioned as a specialist service by NHS England leading to the development of a service specification and there is an on-going service review at the current time. The services for adults in England underwent peer review against the standards in 2012/13 and this was repeated across the entire UK in 2014/16. The peer review not only defined our baseline of care but the second review saw improvements in many aspects of care across the country and have acted as a catalyst for further service developments. The majority of these standards are applicable for the entire United Kingdom, although commissioning arrangements may differ in the devolved nations so some of the standards around organisation of care may be less relevant. We have seen a huge amount of clinical and academic research into SCD globally including several key publications on clinical research trials and new insights into pathophysiology. This research continues, with many new drug therapies and potentially curative treatments now on the horizon. It feels as if we are on the cusp of a new era of clinical care for adults with SCD. Unfortunately these new developments have not always translated into an improvement of care in quality of life or outcomes. Overwhelming feedback from patient surveys shows that many of the issues patients raised in 2008, including timeliness of pain relief, inadequate education of health professionals and inequity of care still exist. The updating of the Standards document therefore seems timely, if not overdue. Our aims in the production of this document were to engage a broad multi-disciplinary group of health providers, patients and support groups. Whilst these are evidence based, as far as possible where evidence exists, this is not intended to be an academic text and tries to focus on practical management issues. By outlining a minimum expected level of care it aims to reduce inequities in health provision. We have aimed to retain the key standards from the first edition that are still needed, update those where evidence has changed and add new standards where they are needed. There have been several changes in the document including the development of recommendations and additional appendices to support health care staff. We hope this document will continue to support improvements and excellence in care across the UK. This document was led and supported by members of the Sickle Cell Society who are working for improvements in clinical care for all those with SCD in this country and worldwide. I would like to thank them for their ceaseless effort and their continued support. They were integrally Chair’s introduction Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 20 involved in the development of these standards at all stages. I would also like to thank the other members of the Editorial Board who have put in many hours of their own time into reviewing evidence and into writing and editing this document. In addition many of the health professionals practicing in the UK have given up their time to author, co-author or review chapters. This is truly a collaborative piece of work. Finally I would like to acknowledge the work and memory of Ade Olujohungbe, the Chair of the first edition of these standards. He was instrumental in the conception, development and production of the standards and was a valued friend and colleague. Without him these standards would not have been possible. Dr Jo Howard Chair of Editorial/Writing group January 2018 Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 21 Note on Methodology The Sickle