SICKLE CELL IN WORK
Supporting someone with sickle cell disease at work doesn’t need to be difficult
Simple adjustments and considerations can make a big difference
Background to Sickle Cell in Work
If you have SCD you have the right to ask your employer to make reasonable adjustments to ensure you are not at a disadvantage at work.
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).
Research on the experiences of people with Sickle Cell Disease (SCD) in employment in England informed this guide. Employers have legal duties under the Employment Rights Act 1996 and the Equality Act 2010. Essentially, these duties include providing contracts and not dismissing employees unfairly. Reasonable adjustments help to fully include disabled workers in the workplace. Direct or indirect racist discrimination, harassment, or victimisation must not occur.
SCD is not automatically classified as a disability, even though it meets several legal criteria.
SCD can cause a substantial and long-term adverse effect on daily activities.
- Walking, lifting, repetitive movement, sitting, or standing for long periods can cause pain.
- Workplace activities like lifting, long hours, shift work, or walking long distances can cause fatigue.
- Depression related to SCD may be considered a mental impairment under the law.
- Stressful work situations can trigger a pain crisis in workers with SCD.
Meeting targets, long hours, insufficient breaks, cold environments, or air conditioning can also trigger a crisis.
SCD is not classified as a disability. However, many people with SCD meet the criteria for disability under the Equality Act 2010.
It is easy to support people with Sickle Cell Disease (SCD) in the workplace with simple, low-cost adjustments. These adjustments help reduce the number of SCD pain crises as well as improving workplace success. Those living with the condition are the experts in how to manage it. They need support from others to facilitate effective self-management of SCD at work.
Factors That Affect People With Sickle Cell In Work
Several workplace factors act as triggers for painful sickle cell crisis. However, employers can minimise these for employees with SCD by considering the following:
- Cold offices, air conditioning, pollution, and sudden temperature changes as they increase risk for SCD pain crises.
- Working outside in windy or cold weather which poses risks for people with Sickle Cell Disease.
- Infections, dehydration, and strenuous exertion which can lead to painful episodes for employees with SCD.
- Avoid alcohol and stress which are recognised triggers for SCD pain crises.
In addition, people with SCD need to stay warm, eat a healthy diet, and take moderate, not excessive, exercise. Rest is important when tired, and they also need to consume plenty of non-alcoholic fluids daily. They need to seek medical advice if a fever develops, and it is equally important for employees with sickle to keep medications and vaccinations up to date. Above all, people with SCD have to seek to live a life that is as stree-free as possible help prevent pain crises.
Employers can support employee health with simple, cost-free adjustments in the workplace.
The Value of Flexible and Hybrid Working with Sickle Cell in Work
Flexible and hybrid working arrangements are more common than before 2020. This shift benefits employees with Sickle Cell Disease (SCD) in the workplace. People with SCD may experience anaemia, disrupted sleep, or priapism due to overnight pain or sleep disorders. They may require regular medical or hospital appointments, especially for those needing blood transfusions. Adjusting work schedules around transfusions or appointments is a great help.
Remote Working and Other Options
Offering remote work options allows employees to attend appointments and catch up on work later.
Employers can both reduce stress and increase productivity by offering this flexibility wherever possible.
Allowing flexibility in other work areas can be equally beneficial. Formal clothing may not only be uncomfortable for people with SCD, but can increase the risk of a pain crisis. A relaxed dress code helps employees with SCD stay warm and comfortable at work. Practical alternatives are placing a workstation near a heating source or failing that, providing heated chairs or a heated jacket. Reduce cold spots in the office to further benefit wellbeing for people with sickle cell disease.
Stress and Sickle Cell in Work
Stress is a recognised trigger for Sickle Cell Disease (SCD) pain crises in the workplace.
Avoid excessive monitoring and pressure to reduce stress for employees with SCD. Adjust deadlines and targets to accommodate individual needs and reduce unnecessary stress. Allow employees with SCD to work at their own pace to support health and productivity. Consultation with the employee is essential if planning an away day or team building event. It is important to adapt team activities to minimise stress and enable full participation for employees with SCD.
Temperature
People with Sickle Cell Disease (SCD) need to keep warm at work for their health. Employers can make reasonable adjustments to support employees with SCD in maintaining warmth. Providing health and safety inspected portable heaters significantly improves comfort for employees with SCD. Consulting employees about air conditioning use is important to prevent discomfort or health risks. Asking if a heated chair or jacket would benefit an employee with SCD is helpful. Placing employees near a heating source and away from cold areas supports wellbeing and reduces pain crisis risk.
Individual Support Plan for People With Sickle Cell in Work
An individual support plan can address the employee’s unique needs and symptoms. It is essential that this is developed by the employer and employee together. SCD varies between individuals, with some experiencing more severe symptoms than others. The individual support plan helps manage SCD effectively in the workplace. Revising the plan annually or whenever necessary keeps it current and relevant:
Include the following areas in the support plan:
- A list of colleagues who have received professional training on Sickle Cell Disease
- 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
GET YOUR TEAM SUPPORTING SICKLE
Sickness Absences with Sickle Cell in Work
Sickle Cell Disease (SCD) is a chronic, unpredictable condition that may cause repeated absences from work. Applying HR sickness absence interviews or disciplinary warnings for each SCD-related absence can be considered “discrimination arising from disability.” Employers may need to adjust sickness absence policies to avoid unfair penalties for employees with SCD. Adjustments should be made alongside the worker’s individual support plan to reduce illness risk.
An employee may need a week of recovery after being hospitalised for a sickle cell crisis. Returning to work too soon can cause relapse and further absences. Allowing a family member or nurse to notify sickness helps when the employee is in severe pain or on opiates. Permitting notification by text or email is also supportive.
Pain
Pain crises can occur suddenly and be severe so SCD carries a great deal of uncertainty. Extreme pain can make a person unresponsive, uncooperative, or moody. It is vital that the team recognises this and follows the worker’s individual support plan for effective support.
Medication
The support plan should include health and safety procedures for roles involving machinery or driving when strong painkillers are used.
Combining pain medication with rest or time out in a safe environment helps employees return to work later in the day. Opiate painkillers may impair decision-making abilities.
The support plan should include health and safety procedures for roles involving machinery or driving when strong painkillers are used. Combining pain medication with rest or time out in a safe environment helps employees return to work later in the day. Opiate painkillers may impair decision-making abilities.
Medical Appointments
People with SCD can require regular medical appointments for ongoing management. Those on anti-sickling drugs need regular monitoring.
Some employees may require hospital visits for cross-matching and transfusion days if they need regular exchange blood transfusions.
Employees may need a day off work if they have fatigue after an exchange transfusions. Good employers do not count these appointments as sickness absence or holiday, nor deduct pay for this time, though the Equality Act 2010 does not require this.
Blood Donation
Employers can encourage blood donation among staff to support people with Sickle Cell Disease and raise awareness of its importance.
Example of the Sickle Pain Scale in the Worker’s Individual Support Plan
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)
