THE NEWSLETTER of the SICKLE CELL SOCIETY SPRING 2020 In
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sickle cell THE NEWSLETTER OF THE SICKLE CELL SOCIETY SPRING 2020 In this issue: Highlights from the Gala Ball New Paediatric Standards Sickle Cell World Assessment Survey Plus, so much more… www.sicklecellsociety.org SCickleo Celnl Soctietey Newnslettters Spring 2020 2 Introduction 3 New Year’s Honours Invetr thre laost six dmonthus, asc well tas ion 4-5 Gala Ball continuing our work as normal, we have Oalso been celebrating our 40th 6 Mayor of Brent Anniversary. We want to say a huge thank you to our members, supporters, donors and 7 Our Journey, Our Story everyone else who has helped us celebrate our 40th Anniversary. It has been wonderful to see 8 Pride of Britain people come together in support and celebration and to be able to look back over the 40 Day Challenge 9 past 40 years and see all the hard work people have done to improve sickle cell care in the UK. 10 Sickle Cell World Assessment Survey Our celebrations reached their peak at our 11 Global Make Some Noise 40th Anniversary Gala Ball; the first Gala Ball we have held in decades. It was a fitting way to 12 My Lifetime Sickle Cell Journey celebrate and raise funds and it was great to have so many of our supporters join us. Thank 13 Colour of Pain you to everyone who came along to show your support, to the performers who provided 14 Sickle Cell at Google Event entertainment and to the staff and volunteers who helped make it all happen. Looking New Paediatric Standards 15 forward to 2020 and beyond we know that there will be lots to continue celebrating but 16-17 Children’s Holiday also many challenges and difficulties which we 18-19 South London Gives will need to overcome. One of the things to celebrate is the 20-21 Fundraising Spotlight possibility of two new drugs becoming available in the UK (subject to NICE and NHS England 22 I Am Number 17 approval). For a long time, many sickle cell patients have had to rely on just one drug 23 SCDAA Conference (Hydroxycarbamide/Hydroxyurea). Hopefully, in S the near future, two new options (Crizanlizumab sicklecell and Voxelotor) will become available. As more THE NEWSLETTER OF THE SICKLE CELL SOCIETY SPRING 2020 In this issue: Highlights from the Gala Ball New Paediatric Standards news develops about these treatments we will Sickle Cell World Assessment Survey Plus, so much more… www.sicklecellsociety.org COVER be sure to keep you informed. Children's Holiday We are excited to have worked with Public Health England to produce the 3rd edition of ‘Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care’ which aims to help improve the lives of children and young people living with sickle cell in the UK. EDITOR Matthew Neal We hope that standards and recommendations Sickle Cell Society 54 Station Road London NW10 4UA T. 020 8963 7798 will prove to be vital support to paediatricians, E. [email protected] haematologists, specialist nurses and psychologists but also to parents and carers in Copyright © 2020 by the Sickle Cell Society. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or insuring the best care for their children. transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of the Editor of Sickle Cell. As you may remember, we have been Views expressed in Sickle Cell are those of the contributors and do not necessarily represent the views of the Sickle Cell Society unless specifically stated. Whilst working with NHS England on the NHS every effort is made to ensure the accuracy of all information published in the Haemoglobinopathy Review (Sickle Cell Service Sickle Cell Society, the Editor, Art Director and Staff cannot accept responsibility for any errors or omissions. 2 sickle cell Spring 2020 Review). The review looked at changes to but we are pleased to say that we have Raising awareness of sickle cell continues specialised services for sickle cell, been working with East London Clinical to be a priority for the Sickle Cell Society and thalassaemia and other rare inherited Commissioning Groups (CCGs) across the 7 over the last six months we have been able anaemias. Keep an eye on our website, social boroughs about the potential expansion of the to engage in a range of awareness media and e-newsletter for updates on the City and Hackney Sickle Cell Peer Mentoring campaigns and events to bring sickle cell review as we get them. Programme to all of East London. into the forefront of the public’s minds. From One of the challenges ahead continues to be Our annual Children’s Holiday is always one community awareness days and Black around finances. We continue to be in an of our highlights and this year is no different. History Month events to sharing people’s uncertain economic time which means extra We had an excellent time this year taking 30 stories and getting involved with health work and care is being taken to ensure the children and young people with sickle cell away awareness campaigns, we continue to see greatest service can be delivered. We are so on an adventure packed holiday. The holiday the need and benefit of providing more grateful to our donors and fundraisers who was an opportunity for the children to meet information around sickle cell. We want to continue to support our work. Their others with sickle cell, learn more about thank everyone who is involved raising contributions enable us to grow our work, reach managing their condition and have fun. You can awareness and who continue to support our more people and plan for the future. You can see what they got up to and find out how to get work. read about some of those who have helped your child’s place for 2020 later on in the John James OBE CHIEF EXECUTIVE and support us and ways in which you can get newsletter. Kye Gbangbola CHAIR OF TRUSTEES involved later in the newsletter. You may remember that we were involved with the Sickle Cell World Assessment Survey (SWAY) a global survey of sickle cell patients and treating healthcare professionals aimed at New understanding the current burden and unmet needs in sickle cell patients. We were able to Year’s recruit 200 patients to take part and we are pleased to announce that the results are now Honours in. Findings from more than 2,000 respondents Rudolph Walker OBE Clive Hubert Lloyd CBE in 16 countries underscore the debilitating and 2020 Awarded CBE Awarded Knights Bachelor under-reported effects of sickle cell and a pattern of not seeking care despite potentially life-threatening symptoms. You can find out more later on in the newsletter. The last six months has also been full of celebrations for our patrons. One of our patrons, and founding members, Professor Dame Elizabeth Anionwu, received a Pride of Britain Award. As well as that, Sir Clive Lloyd CBE, Professor Dame Sally Davies DBE, The Right Reverend Professor Baroness Rose Josephine Hudson-Wilkin Dame Sally Davies DBE Floella Benjamin OBE Baroness Dame Floella Benjamin OBE, Rudolph Awarded MBE Awarded Dame Grand Cross Awarded Damehood Walker CBE and the Right Reverend Rose Hudson-Wilkin MBE were all awarded honours he Sickle Cell Society wants to wish a resources to raising awareness of our in the Queen’s New Year’s Honours. We want to massive congratulations to our patrons work and support the sickle cell wish our patrons a massive congratulations and Twho received honours from the Queen community in a range of different ways. thank them for all the support they provide for on New Year’s Day. Five of our patrons were included in the us and the sickle cell community. We are so grateful to receive the support Queen’s New Year’s Honours 2020 and The Hackney and City Mentoring Programme that we do from our patrons. Our patrons are we want to wish all of them a huge has been a big part of our work over the last notable people who dedicate their time and congratulations! few years. The project came to an end in 2018 Spring 2020 sickle cell 3 Sickle Cell Society celebr a he Sickle Cell Society celebrated 40 years call to action for continued support and Chizzy Akudolu then returned to the stage to of working within the sickle cell community donations. The Master of Ceremonies, Chizzy thank the evening’s sponsors and welcome a Twith a gala ball in central London. Akudolu (Actress: Holby City, Dead Set, Jinx), few supporting politicians including: Dawn The Sickle Cell Society, set up in 1979, has then took to the stage to welcome guests and Butler MP; Janet Daby MP; Mayor of Brent, spent the last 40 years working to improve the set the celebratory tone of the evening. Ernest Ezeajughi; Mayor of Camden, Maryam lives of people living with sickle cell disorder The guests then enjoyed a delicious three Eslamdoust; and London Assembly Member, and their families. On Saturday 14th September course meal; many sat at tables hosted by Florence Eshalomi. we joined with supporters, service users, celebrities including: Alison Hammond London rapper, and sickle cell advocate, patrons and celebrity guests at a glamourous (Television Personality, TV Presenter on This A Star, then took to the stage to perform his dinner and dance to celebrate the progress that Morning), Rudolph Walker OBE (Actor: new single, Hidden Pain. The song was has been made. Eastenders, The Thin Blue Line, King Ralph), produced in association with NHS Blood and Hosted in the Royal National Hotel, the Baroness Floella Benjamin OBE (SCS Patron, Transplant and gives a powerful insight into evening opened with a red carpet drinks Actress, Writer, Campaigner), and Kym Mazelle living with sickle cell.