Simon Dyson

Professor Simon Dyson

Job: Professor of Applied Sociology

Faculty: Health and Life Sciences

School/department: School of Allied Health Sciences

Address: De Montfort, University, The Gateway, Leicester, LE1 9BH.

T: +44 (0)116 257 7751

E: sdyson@dmu.ac.uk

W: /sicklecell

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Personal profile

Simon Dyson is Professor of Applied Sociology and is Director of the Unit for the Social Study of Thalassaemia and Sickle Cell at 51漫画 in the United Kingdom.

His research interests include all social aspects of the world’s leading genetic conditions, sickle cell thalassaemia. He has had seven books published, including Ethnicity and Screening for Sickle Cell and Thalassaemia; Sickle Cell and Deaths in Custody (with Gwyneth Boswell) and Genetics and Global Public Health: Sickle Cell and Thalassaemia (with Karl Atkin).

He has written numerous articles on the social and political aspects of sickle cell, including such topics as the politics of racism and sickle cell; the experiences of young people with sickle cell, sickle cell and school education, and sickle cell in Africa. He is a scientific advisor to the UK Sickle Cell Society and has spoken on sickle cell at international conferences in North America, South America, Europe, India and Africa.

Research group affiliations

Unit for the Social Study of Thalassaemia and Sickle Cell.

Publications and outputs

dc.title: 鈥淚 want to become someone!鈥� Gender, Reproduction and the Moral Career of Motherhood for Women with Sickle Cell Disorders dc.contributor.author: Berghs, Maria; Dyson, Simon M.; Gabba, Amelia; Nyandemo, Sia; Roberts, George; Deen, Gbrilla; Thomas, Iyamide dc.description.abstract: In Sierra Leone, motherhood is being transformed into a moral career for women with sickle cell disorders. This qualitative participatory study, conducted in 2018, involved thirty-six semi-structured interviews with female care-givers and women with sickle cell disorders. Mothers argued that medical models of disease, combined with caring practices, are means to morally manage ideas of 鈥榮poiled identity鈥� and rethink the sick role, disability and life-outcomes of a potentially serious condition. Mothers encourage their children with sickle cell to stay in education as a route to access formal employment and careers that will not tax their bodies and ensure reproductive timing. Education and employment are framed temporally to ensure a delay so that girls can develop caring relationships and access motherhood safely. Understanding and encouraging the development of motherhood as a moral career, involving embodied hyper-vigilant caring practices, is valuable for the self-identity of mothers, allowing them to see a future for themselves and their children. dc.description: The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
dc.title: 鈥楾hey Can Replace You at Any Time!鈥�: (In)Visible Hyper-Ableism, Employment and Sickle Cell Disorders in England dc.contributor.author: Berghs, Maria; Atkin, Karl; Dyson, Simon M.; Findlay, Vanetta; Greene, Anne-Marie dc.description.abstract: This paper explores how ableism interacts with multiple identities in the workplace, in order to understand barriers and enablers to employment. Two focus group discussions and forty-seven semi-structured interviews were conducted with people who have sickle cell disorders (SCD). In England, SCD primarily affects people of Black African and Black Caribbean descent and is understood as an invisible disability because its signs and symptoms can be hidden. When exploring how participants give meaning to their experiences, we find that ableism acts as an embodied social sorting that foregrounds disablism, sexism and racism, requiring research participants not only to be 鈥榝it for鈥� work but also to 鈥榝it in鈥� at work. This makes invisible disabilities visible, allowing implicit and explicit disability discriminations. We advance theorizing in this area, by offering more nuanced conceptions of ableism within the workplace. Ableism is linked to discriminatory practices and power-dynamics which prevent access to employment, retention and career development and also challenge ensuring health for any encumbered body. dc.description: open access article
dc.title: Ask me if I am okay: COVID-19 and the psychological and social impact of long-term shielding experiences of people with sickle cell disorders and their care givers dc.contributor.author: Graham, Sadeh; McFee, Rachel; Horne, Francesca; Berghs, Maria; Dyson, Simon; Scott, Yates; Howson, Carlton; Rahman, Hobby dc.description.abstract: This pilot mixed methods study wanted to understand the psychological impact, as well as the social needs, of people with sickle cell disorders (SCD) who had been identified as 鈥榚xtremely clinically vulnerable鈥� by the government and had been asked to 鈥榮hield鈥� at home from the 23rd of March 2020, to when shielding was officially lifted, on the 31st of March 2021. We were also interested in how parents who had SCD and parents of children with the condition were coping. We found that throughout the pandemic, while people鈥檚 very basic social needs were being met, their psychological health needs were not.
dc.title: On the Possibility of a Disabled Life in Capitalist Ruins: Black Workers with Sickle Cell Disorder in England dc.contributor.author: Dyson, Simon; Berghs, Maria; Atkin, Karl; Greene, Anne-marie dc.description.abstract: The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person鈥檚 disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The relational concepts of Anna Tsing (2015)- salvage accumulation, entanglement and precarity - were used as an analytical framework to assess the reported experiences. To understand these experiences of those with SCD and employment, it is necessary to apprehend the whole ecology of their bonds to their bodies; their social relationships of kin and family; and their wider social relations to communities. Paid employment breaks bonds crucial to those living with SCD. First, employers can only extract sufficient productive value from workers if they disregard the necessary self-care of a precarious body. Secondly, reproducing labour though child-care, housework and care work is a taken-for-granted salvage central to capitalism. Thirdly, voluntary and community work are salvaged for free by employers towards their accumulation of profits. People with SCD find bond-making activities that create the commons life-affirming, thereby reconfiguring our understanding of connections between disability and work. Tsing, AL (2015) The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins Princeton, NJ: Princeton University Press. dc.description: The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
dc.title: Sickle Cell and Wellbeing in NHS Services dc.contributor.author: Dyson, Simon M.; Yates, Scott; Kemp, Rachel; Horne, Francesca; Graham, Sadeh; Berghs, Maria dc.description.abstract: This guide is based on research examining the shielding experiences of people with sickle cell disorders (SCD) and parents of children with the condition during the COVID-19 pandemic. The aim was to improve NHS services for this population group. Services have duties under the Equality Act 2010 to ensure equity and tackle health inequalities. Since SCD disproportionately affects Black, Asian and Minority Ethnic (BAME) communities, there are also duties not to engage in direct or indirect racist discrimination, nor in harassment or victimization. It is important that anti-racist and anti-bias training is offered in all NHS services and cultural competency encouraged amongst all staff. Additionally, that conditions affecting the BAME population, like SCD, become a mandatory part of all nursing and medical educational and NHS training programmes.
dc.title: Intersectionality and Employment in England: Where are all the Black Disabled People? dc.contributor.author: Berghs, Maria; Dyson, Simon dc.description.abstract: This paper begins by giving a description of the relationship between austerity and the neoliberal policy focus on work in the UK, and how this impacts negatively on disabled people. It examines why Black disabled people鈥檚 employment experiences have been missing in the literature despite the fact that they are more affected by austerity. Black disabled people鈥檚 experiences in the job market tend to focus on racism and discrimination, whilst other struggles linked to disability, and what this implies for Black people, are poorly understood. A case study, of Black disabled workers, living with the sickle cell condition, is examined to comprehend why more nuanced intersectional research might be needed to understand why some Black people鈥檚 experiences of employment remain invisible. dc.description: The file attached to this record is the author's final peer reviewed version.
dc.title: You have to find a caring man, like your father! Gendering sickle cell and refashioning women's moral boundaries in Sierra Leone dc.contributor.author: Berghs, Maria; Dyson, Simon M.; Gabba, Amelia; Nyandemo, Sia E.; Roberts, George; Deen, Gibrilla dc.description.abstract: Most research on sickle cell disorders has tended to be gender-blind. This qualitative study undertaken in 2018, explores if and how sickle cell disorders become gendered in Sierra Leone through the analytical framework of a feminist ethics of care. It argues that women have to navigate moral blame when they have children with the condition. At the same time women refashion moral boundaries so that gendered norms around childhood and parenting for such children become suspended, in favour of creation of careful spaces. Parental fears of physical and sexual violence mean that gendered sexual norms are enforced for teenage boys as they are encouraged into early adulthood. In contrast, girls are kept in enforced ignorance about the consequences of sickle cell for reproduction and are encouraged to delay motherhood. This is because, as women relate, relationships and giving birth are fraught with embodied dangers and risks of violence. dc.description: The file attached to this record is the author's final peer reviewed version.
dc.title: Barriers and Enablers to Employment: Black Disabled Peoples Living with Sickle Cell Disorder Project. dc.contributor.author: Berghs, Maria; Dyson, Simon dc.description.abstract: Final report of the Barriers and Enablers to Employment: Black Disabled Peoples Living with Sickle Cell Disorder Project. dc.description: open access
dc.title: Incidental Finding of Sickle Cell Trait From an Everyday Diabetes Test: Should General Health Care Providers and testing centres report, retest, or refer? dc.contributor.author: Cronin de Chavez, Anna; Dyson, Simon; Babbington, Fiona; Berghs, Maria; Atkin, Karl; Whitelaw, Donald; Miller, Adrian dc.description.abstract: The HbA1c test is increasingly widely used as a diagnostic and screening test for diabetes mellitus type 2 (T2DM) but the presence of haemoglobin variants, such as sickle haemoglobin, can interfere with results in some analytical systems. These interferences are occasionally reported by laboratories, leading unprepared patients to suspect they may be sickle cell carriers and seek confirmation through a sickle cell test. Incidental findings of Hb variants, and the reporting thereof, present multiple ethical challenges to laboratories, medical practitioners, patients and their family members, but there appear to be no international or national guidelines on how to deal with the reporting of these findings. This paper explores issues such as whether informed consent is necessary, how the results should be communicated, how the patient may be affected by knowing their carrier status, the timing of communications, complications caused by partial results, and being a 鈥榟ealthy carrier鈥� at the same time as potentially experiencing symptoms. dc.description: The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
dc.title: Sickle Cell, Work and Employment: A Guide for Employers and Employees on Sickle Cell Disorder (SCD) dc.contributor.author: Berghs, Maria; Morrison, Vanetta; Sokhal, Kalpna; Dyson, Simon dc.description.abstract: Work, Employment and Sickle Cell This guide is based on research examining the experiences of people with sickle cell disorder (SCD) in work and employment in England. There are duties on employers under the 1996 Employment Rights Act to provide a contract and not to dismiss employees unfairly. There are also duties under the Equality Act 2010 to make reasonable adjustments to enable the inclusion of disabled workers in the workplace, and, since SCD disproportionately affects BME communities, not to engage in direct or indirect racist discrimination, nor in harassment/victimization. If people with SCD are given appropriate support they are able to carry out their jobs. dc.description: A downloadable copy of this leaflet is available at: http://sicklecellwork.dmu.ac.uk http://www.sicklecellanaemia.org This guide was first produced in 2019 on the basis of research funded by the Big Lottery and DRILL (Disability Research Independent Living and Learning), a research grant held by Simon Dyson and Maria Berghs (51漫画); the Sickle Cell Society and OSCAR Sandwell This work is licensed under Creative Commons [CC-BY-SA]. Except for the logos on the final page, it may be freely used and distributed provided original authorship is acknowledged. It may be adapted for re-use, provided the resultant work is shared back with sickle cell communities by offering the revised material to the Sickle Cell Open: Online Topics and Education Resources (SCOOTER) Project www.sicklecellanaemia.org and/or to the Barriers & Enablers to Employment: Black Disabled Peoples Living with Sickle Cell Disorder Project http://sicklecellwork.dmu.ac.uk

Research interests/expertise

Social aspects of sickle cell and thalassemia.
Sickle cell
Thalassaemia
Sociology
Social policy
Social theory
Social research methods

Qualifications

BSc(Soc); MPhil; PhD; DSc

Membership of external committees

UHL NHS Trust Advisory Committee on Sickle Cell and Thalassaemia (2002 - date)

Public Health England Sickle Cell and Thalassaemia Outreach Advisory (2015 - date)

Membership of professional associations and societies

UK Forum on Haemoglobin Disorders 1995 - date.

Current research students

Rahimot GBADAMOSI (UK) Sickle Cell in Schools

Externally funded research grants information

Barriers and Enablers to Employment: Black Disabled Peoples Living with Sickle Cell Disorders

Big Lottery/DRILL

January 2018-January 2020

Principal Investigator

Collaborators: Maria Berghs (51漫画); Sickle Cell Society; Organization for Sickle Cell Anaemia Research (Sandwell)

Living with Sickle Cell or Beta-Thalassaemia Trait: Implications for Identity or Social Life
Economic and Social Research Council
January 2012 - January 2014.
Co-applicant
Principal Investigator: Professor Karl Atkin (University of York)
Collaborators: Waqar Ahmad (Pro-VC Middlesex University); Elizabeth Anionwu (Emeritus Professor, University of West London)

Involving Fathers in Ante-Natal Screening for Sickle Cell Disorders: Improving Informed Decision-Making
Research for Patient Benefit (National Institutes for Health)
January 2012 - January 2014
Co-applicant
Principal Investigator: Professor Karl Atkin (University of York)
Collaborators: Leeds Clinical Genetics Service, Sickle Cell Society

Sickle Cell Open Online Topics and Educational Resources
Higher Education Academy/JISC
August 2010-August 2011
Co-applicant
Principal Investigator: Viv Rolfe (51漫画)
Collaborators: Mark Fowler (51漫画)

Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease
Economic and Social Research Council
September 2006-February 2011
Principal Investigator
Collaborators: Sue Dyson, Lorraine Culley (51漫画); Karl Atkin (York); Jack Demaine (Loughborough)

Professional esteem indicators

Scientific Advisor, Sickle Cell Society, 2008-date

Editorial board Ethnicity and Health, 2011 - date.

Case studies

The work of the Unit for the Social Study of Thalassaemia and Sickle Cell has been used by the All Party Parliamentary Group on Sickle Cell at thalassaemia under Dianne Abbott MP at Westminster.The Social Aspects of Sickle Cell Disease and Thalassaemia in Young People.

The Guide to Sickle Cell and School Policy has been used by the Department for Education