WORKING WITH SICKLE CELL
Creating inclusive, supportive workplaces in Manchester
Simple adjustments and considerations can make a big difference
Working With Sickle Cell Disease In The UK
This guide will help you if you are working with sickle cell disease in the UK.
What rights do people with sickle cell disease have at work?
If you live with Sickle Cell Disease (SCD), you have the right to ask your employer for reasonable adjustments that help you thrive at work—not just survive. These are legal protections under the Equality Act 2010 (and supported by the Employment Rights Act 1996), ensuring fair treatment and preventing discrimination.
This page is adapted from “Sickle Cell Work and Employment: A Guide for Employers and Employees on Work, Employment and Sickle Cell Disorder (SCD)“
(http://sicklecellwork.dmu.ac.uk).
Legal rights under the Equality Act 2010
Employers have clear legal duties under the Employment Rights Act 1996 and the Equality Act 2010.
They must:
- Give employees written contracts.
- Avoid unfair dismissal.
- Make reasonable adjustments to support disabled staff.
- Prevent discrimination, harassment, or victimisation – direct or indirect.
Sickle cell disease is not always classed as a disability. Even so, many people with SCD meet the legal definition under the Equality Act.
Typical workplace challenges
SCD can have a lasting impact on everyday tasks and energy levels.
- Walking, lifting, sitting, or standing for long periods can cause pain.
- Shift work, long hours, or heavy workloads often lead to fatigue.
- Stressful situations or pressure to meet targets can trigger a pain crisis.
- Cold or air-conditioned workplaces may also cause a crisis.
- Depression linked to SCD can count as a mental health impairment under the law.
Self-care strategies for employees
Supporting people with SCD at work is often simple and low-cost. Small changes can prevent pain crises and help staff stay well.
- Ask what adjustments help – the person with SCD knows their body best.
- Encourage regular breaks, hydration, and flexible scheduling when possible.
- Keep the workspace warm and comfortable.
- Maintain open communication so staff feel safe to speak up early.
Together, these actions create a fairer and more productive workplace for everyone.
Why work can be more challenging with sickle cell disease
Temperature sensitivity: Cold offices, air conditioning, and sudden temperature changes can trigger health issues.
Physical strain: Long hours, prolonged standing or walking, and demanding manual tasks may lead to fatigue or crises.
Stress and pressure: High-stress environments, tight deadlines, or excessive monitoring can worsen symptoms.
How employers and employees can make work more SCD-friendly
Personalised support plans: Work together to create a simple plan that covers medical needs, clear contacts, and flexible conditions.
Flexible working: Hybrid or home options make it easier to rest and attend appointments.
Comfortable clothing and workspace: Let staff wear warm clothes or use heated seats to prevent cold triggers.
Stress-aware policies: Set realistic deadlines and talk to staff before giving high-pressure tasks.
Staying Healthy at Work
Key self-care steps that support wellbeing on the job include:
- Seeking medical attention promptly when needed
- Keeping warm
- Staying hydrated
- Prioritising rest
- Maintaining healthy nutrition
- Ensuring vaccinations and medications are current
Temperature
People with Sickle Cell Disease (SCD) need to keep warm.
Employers can make reasonable adjustments such as:
- Providing health and safety inspected portable heaters
- Consulting employees about air conditioning use
- Asking if a heated chair or jacket would benefit an employee with SCD
- Placing employees near a heating source and away from cold areas
Creating an Individual Support Plan
A personalised support plan helps meet each person’s specific needs at work. It should be developed jointly by the employer and employee, since Sickle Cell Disease (SCD) affects people differently. Some experience frequent symptoms; others have milder ones. Review the plan at least once a year, or sooner if circumstances change.
Include the following in the support plan:
- Preventive measures to keep the employee well at work
- Arrangements for working while taking pain medication
- What constitutes an emergency and the appropriate response
- Key contacts for workplace support
- The consultant or main health professional caring for the employee
EMPLOYERS!!
JOIN US IN THE WIDER BATTLE AGAINST SICKLE CELL DISEASE
Find out more about how to support people with sickle cell disease
Addressing Absences With Compassion
SCD Managing Absences with Understanding
Sickle Cell Disease (SCD) can be unpredictable. Sudden pain crises or hospital stays may mean an employee needs time off without warning.
Supportive employers should work with staff to create an individual support plan and:
Allow a trusted family member or health professional to update the workplace if the employee is too unwell to make contact.
Adjust sickness policies so staff are not unfairly penalised.
Plan return-to-work dates around the person’s recovery and support plan.
Promoting Awareness and Inclusion
Employers can also show wider support by:
- Building a workplace culture that values empathy and inclusion.
- Sharing information about SCD to improve understanding.
- Encouraging staff to donate blood and support transfusion needs.
Medication and Safety
If a job involves driving or using machinery, the support plan should include safety steps for times when strong painkillers are used.
Resting or taking a short break in a quiet space can help the employee return to work later in the day.
Medical Appointments
People with SCD often need regular check-ups to monitor treatment and prevent complications.
Some may attend hospital for blood matching or exchange transfusions. Fatigue after these treatments can last a day or more.
Good employers do not count medical appointments or recovery days as sickness or holiday leave. Instead, they see them as part of ongoing health management.
Encouraging Blood Donation
Employers can help raise awareness by promoting blood donation among staff.
This support saves lives and directly helps people living with Sickle Cell Disease.
Example of the Sickle Pain Scale
ONLY THE EMPLOYEE IS AN EXPERT IN THEIR OWN PAIN AND ONLY THE EMPLOYEE CAN SAY HOW SEVERE THEIR PAIN IS AT ANY GIVEN TIME.
ALWAYS LISTEN TO THE WORKER.
(this page has been adapted from “Sickle Cell Work and Employment: A Guide for Employers and Employees on Work , Employment and Sickle Cell Disorder (SCD) by Simon Dyson, Maria Berghs, Vanetta Morrison and Kalpna Sokhal – http://sicklecellwork.dmu.ac.uk)
