Screening for sickle cell and beta thalassaemia
Credits
Dr Louise Locock
Led the research, which was only possible with the help of a team of researchers able to interview in other languages. Louise Locock is a qualitative researcher and professor in health services research at the University of Aberdeen. Before joining the University of Aberdeen in 2017, she was Director of Applied Research at the Health Experiences Research Group, University of Oxford, and has led numerous studies disseminated on this site.
Dr Shenaz Ahmed
Recruited and interviewed Urdu and Mirpuri speakers, as well as some English-speaking interviewees of Pakistani and Indian origin. Shenaz is a Research Fellow at the University of Leeds specialising in psychosocial aspects of genetic screening.
Huguette Comerasamy PhD
Interviewed French speakers. She lectures in midwifery at the University of Brighton, specialising in the health of women from minority ethnic communities. She is lead midwife for the FGM (female genital mutilation) antenatal clinic at Central Middlesex.
Isabel Lima
Interviewed Portuguese speakers. Isabel has been a social worker with Portuguese-speaking African refugees and is now an independent film-maker.
Rubina Rahman
Recruited and interviewed Bangladeshi respondents. She specialises in minority ethnic health, and has held research posts at Bart's & the London Queen Mary School of Medicine & Dentistry and the School of Education, University of Birmingham.
Advisory Panel
Dr Ann McPherson
Medical Director, Health Experiences Research Group, Department of Primary Health Care, University of Oxford.
Dr Kofi Anie
Psychologist, Brent Sickle Cell & Thalassaemia Centre
Dr Lorna Bennett
Clinical Services Manager, Camden & Islington Sickle Cell & Thalassaemia Centre, and Chair of Sickle Cell Society Management Committee
Dr Mary Petrou
Head of Perinatal Centre/Honorary Senior Lecturer, Royal Free & University College London
Dr Nola Ishmael OBE (chair)
Training and Development Healthcare Consultant, former Nursing Officer, Department of Health
Dr Sandra Anglin
Programme Implementation Manager, NHS Sickle Cell & Thalassaemia Screening Programme
Dr Shenaz Ahmed
Research Fellow, Academic Unit of Psychiatry & Behavioural Sciences, University of Leeds
Ms Bernice Burton
Service Manager, Newham Sickle & Thalassaemia Centre
Ms Beverley Smalling
Service Director, City &Hackney Sickle Cell & Thalassaemia Centre
Ms Cynthia Gill
Implementation Manager, NHS Sickle Cell & Thalassaemia Screening Programme
Ms Elaine Miller
Co-ordinator, UK Thalassaemia Society
Ms Hellen Adom
Vice Chair of Greenwich Sickle Cell group
Ms Iyamide Thomas
Regional Care Advisor, Sickle Cell Society
Ms Liz Aram
Communications Consultant, NHS Sickle Cell & Thalassaemia Screening Programme Committee
Ms Sue Ziebland
Research Director, Health Experiences Research Group, Department of Primary Health Care, University of Oxford.
Prof Elizabeth Anionwu
Professor, Head of Mary Seacole Centre for Nursing, Thames Valley University
Prof Joe Kai
Professor of Primary Care, University of Nottingham and Leader of Pegasus Network
Acknowledgements and thanks to:
All those who took part in interviews; the Haemoglobinopathy Association of Counsellors; Sickle Cell Society; UK Thalassaemia Society; the many individual sickle cell & thalassaemia counsellors and other NHS & support group staff who helped; Tanvi Rai.
We would also like to thank Dr Moira Dick, Consultant Paediatrician at Kings College Hospital for her advice and support in updating this section in 2015.and again in 2018.
Supported by:
Hulme University Fund, Oxford
NHS National Screening Programme for Sickle Cell and Thalassaemia
Programme Director Dr Allison Streetly