How to support employees with sickle cell disorders

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Many of the adjustments needed are small and inexpensive, but enable people with a condition to work much more effectively

Ensuring the workplace is inclusive and diverse can be challenging for employers who are not always familiar with disabilities, much less chronic conditions or illnesses. In a business climate affected by austerity organisations may worry about costs or may not understand how to translate the Equality Act 2010 into practical support for the workforce.

Employees too may feel frightened to disclose a chronic illness, mental health condition or disability and not know how to ask for reasonable adjustments in the workplace.

In a study funded by Disability Research for Independent Living and Learning (DRILL) and The National Lottery Community Fund, some of these issues were explored. The project worked with people who have a sickle cell condition and their voluntary organisations, to understand some of the barriers they experience in employment.

What is sickle cell?

Sickle cell disorders (SCD) are inherited blood disorders that can have an impact on a person’s quality of life. SCD can present as an acute condition, chronic illness and/or a disability. It is a complex and variable condition, both individually and across the life course, meaning that while one person can have a mild version for most of their life another can have a life-threatening and disabling condition. Many of the signs and symptoms of the sickle cell are invisible, such as chronic pain or fatigue. Symptoms are also linked to extremes in temperature, dehydration and can be caused by stress and other illnesses. People most affected by sickle cell are of Afro-Caribbean, African, Middle Eastern, Indian, Latin-American and Mediterranean origin.

A guide for employers and employees

Using two focus groups, 47 individual interviews and policy development workshops, the study co-produced a practical guide to sickle cell that employers and employees can use. The guide explains some of the issues that people were encountering in the workplace and identified examples of good practice. There were longstanding structural issues linked to various forms of discrimination such as racism, sexism and ablism, issues that employers have a duty to act on.

However, one area around which employers were successful was making simple and low-cost reasonable adjustments to accommodate people with sickle cell. Employers made sure, for example, that the working environment was adequately heated or people were provided with portable heaters, that they had access to water, could take regular toilet breaks, that they could take pain medication if needed, and that adjustments could be made to uniforms to ensure that they kept warm in Winter and cool in hot temperatures.

If specialist equipment or help with travel to work was needed but the employer could not afford to provide it, they had support from the Access to Work programme, which provided one participant with taxis to work and another ergonomic equipment. We also noted how for some people flexible working conditions and/or the provision of computers to work from home reduced stress and allowed them to do their jobs well.

Worker's Individual Support Plan (WISP)

People understand their condition, how to accommodate it and what they are capable of. So it is important to listen to them and take their advice on what they need. This is why the study included a Worker's Individual Support Plan (WISP) in the employment guide.

This is to help both employers and employees write down what reasonable adjustments are needed in a document form that can be revisited regularly. Having such a plan in place is a useful tool for human resources and occupational health in that it begins a conversation and documents the needs an employee may have in a confidential way. Even if managers change or a person moves position they have a record in writing of what their condition is and what they need to do their job well so they are not disadvantaged, in keeping with the Equality Act 2010.

It includes procedures for undertaking health and safety checks for specific job roles as well as contacts in case of an emergency. Ensuring that employees feel diversity and equality is respected in the workplace and that they have reasonable adjustments in place should ensure greater wellbeing and create an environment where everyone feels enabled to work to their best.

Simon Dyson is professor of applied sociology at De Montford University (DMU). Maria Berghs is a lecturer in the School of Allied Health Sciences at DMU

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