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A survey of 569 young people with sickle cell disorder (SCD) in England has found such pupils miss considerable periods of time from school, typically in short periods of two or three days. One in eight has school absences equating to government-defined "persistent absence". Students with SCD report that they are not helped to catch up after these school absences. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being called lazy when tired. Children perceived both physical environment (temperature, school furniture) and social environment (being upset by teachers or other pupils) as triggers to episodes of their illness. Policy initiatives on school absences; preventive measures to ensure maintenance of good health; and measures to prevent perceived social attitudes precipitating ill health would also support children with other chronic illnesses at school. (Contains 8 tables and 1 note.)

Young people in hospitals face a range of challenging issues. Many have chronic conditions and experience stigmatisation, anxiety and family conflict. They may also experience social isolation in hospitals, separation from local peer groups and sources of support, and separation from trusted carers during transition to adult care. These issues can require careful handling. However, there is evidence that clinical staff often do not communicate effectively with young patients, that relationships can become contested, especially around "adherence" to treatment regimens, and that important underlying difficulties that young people face are not addressed, leading to resistance and disengagement from care. This paper explores this range of challenges, and presents some research evidence to argue that youth work is particularly well placed to engage with such issues. Although youth work in UK hospitals is currently very rare and under-researched, we contend that what evidence is available suggests that it can be effective in addressing the challenges of young people's experience, and may have important health and wider-ranging general benefits for young people, health staff and hospitals. (Contains 2 notes.)

Normalization and social role valorization continue to play a central role in shaping debates and practice relating to learning difficulties. In the context of recent arguments this paper draws on the work of Foucault to deconstruct these theories. Foucault's work alerts us to a conceptual confusion at their heart which reproduces a common but problematic individual-society dualism. There is an implicit, and problematic, presence in the theories of a pre-social individual conceived as having essential impairments and who is passive in the face of negative socialization. We propose that Foucault's "ethical" domain of inquiry, with its concern for how people actively understand themselves and govern their conduct in relation to specific values and a "truth" that they are obliged to recognize in themselves, provides the basis for returning the individual-as-subject to theories in an active, critical manner.

Sickle cell disorder (SCD) is a chronic illness that in England disproportionately affects marginalized ethnic groups, but has yet to feature extensively within educational or disability research. This review of existing literature makes the case for a sustained developmental research programme around SCD, disability and education. There are potentially life-saving decisions that could be made by teachers in caring for a child with SCD. The place of the school as a venue for health screening with respect to vision, hearing and dental care is also complicated by SCD. The lack of a formal school policy to address the combined episodic and longer term school absences correlated with SCD clearly disadvantages a group of pupils whose academic potential may already have been curtailed by teacher expectations based on their ethnicity. Both the physical and social milieu of the school could be adapted so that the environmental triggers of severe painful episodes associated with SCD are greatly reduced. Systems of pastoral care and health education elements of the school curriculum need to be attuned to the challenges and opportunities for learning that SCD raises. SCD may be considered as a resource for education across a range of national curriculum subjects, could bring an anti-racist dimension to subjects such as mathematics, biology, history and geography and could challenge a number of prevailing disabling and racist discourses in wider society. In short, SCD could be one bridge to more inclusive education for pupils of marginalized ethnic groups.

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 'spoiled identity' 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. [ABSTRACT FROM AUTHOR]

The Department of Health has announced a linked antenatal and neonatal screening programme for haemoglobinopathies by 2004 in a comprehensive national plan for the National Health Service in Britain. In response the National Screening Committee has commenced development work on how such a programme can best be implemented, including investigation of the effectiveness of a question about ethnic origin as a basis for selection. In addition, two recent health technology assessment reports have assessed alternative options for antenatal and neonatal haemoglobinopathy screening programmes in the United Kingdom. Both reports and commentators have emphasised the importance of developing a standardised instrument for collecting ethnicity data and recommended early development of such work. An examination of the evidence base on the use of ethnicity as a primary screening tool reveals substantial variability in practice and in the quality of data collected, with risk group misclassification as high as 20% against a recommended target of under 5.5%. The literature on the conceptual basis and structure of ethnicity questions, method of assignment in data collection, and level of resolution on categorisation is reviewed to identify the most appropriate content and format of a screening question for the haemoglobinopathies. Question options are evaluated, including the use of an extended 2001 Census classification and a `non-North European' identifier and a candidate question based on `family origins' is offered for debate. Finally, issues relating to the testing of the efficiency of an ethnicity question and the operationalising of its use for antenatal sickle cell screening are discussed. Keywords: Antenatal screening; Sickle cell disorders; Ethnicity; Britain

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's employment experiences have been missing in the literature despite the fact that they are more affected by austerity. Black disabled people's 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's experiences of employment remain invisible. While there has been a lot of attention on disability and impact of austerity and employment in the England, certain experiences have been missing in analysis. The study explains why Black disabled people's employment experiences are neglected in disability, ethnic minority as well as within employment research. Black people's experiences in the job market tend to focus on racist discrimination or identities, whilst other struggles linked to class, sexism and disability discrimination are poorly delineated. A case study of Black disabled workers with a genetic condition, sickle cell, is given to argue that more nuanced research is needed. [ABSTRACT FROM AUTHOR]