SCD AND WORK

Supporting someone with sickle cell disease at work doesn’t need to be difficult

Simple adjustments and considerations can make a big difference

Find Out More About SCD

Background to Working With SCD

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). This guide is based on research examining the experiences of people with SCDE in work and employment in England. Employers have responsibilities under the 1996 Employment Rights Act and the Equality Act 2010. These include providing a contract, not dismissing employees unfairly, making reasonable adjustments to enable disabled workers to be fully included in the workplace and not engaging in direct or indirect racist discrimination, harassment or victimisation.

SCD is not automatically categorised as a disability even though it has meets several of the criteria for having a “substantial and long-term adverse effect on [the person’s] ability to carry out normal day-to-day activities” including:

  • Some activities such as walking, lifting, repetitive movement, sitting or standing for long periods can cause pain.
  • Some work based activities such as lifting loads, long hours, shift work or walking long distances cause fatigue.
  • Some people who develop depression because of their SCD may meet the criteria of mental impairment.

A worker with SCD may find some work situations stressful. Stress is a trigger for a pain crisis. These stressful situations could include trying to meet targets, working long hours, insufficient breaks, a cold environment or the use of air conditioning. Many people with SCD would fall within the criteria for disability under the Equality Act 2010.

People with SCD can be supported to reduce the number of crises and to succeed in the workplace with simple adjustments that are not expensive for an employer to implement. People with SCD become experts in managing their condition, they simply need other people to allow them to do that .

Factors That Affect People At Work

These factors are likely to cause a painful sickle cell crisis and people may need support to ensure that these factors are minimised in the workplace.

  • A cold office, air conditioning, pollution, sudden changes in temperature or working outside in windy or cold weather.
  • Infections, dehydration and strenuous exertion
  • Stress or drinking alcohol

People with SCD need to stay warm, eat a healthy diet, take moderate exercise but not to excess, rest when they are tired, drink plenty of liquids but not alcohol and seek medical advice if they have a fever. They need to keep up with their medications and vaccinations and life a stress-free life as much as possible. Employers can help people stay healthy without any cost to them. A few simple adjustments is all it takes.

The Value of Flexible and Hybrid Working

Flexible and hybrid working are more common place now than they were before 2020 and this is an ideal situation for people with SCD.  People with SCD may have anaemia, pain overnight that affects their sleep, a sleep disorder or priapism. They also tend to have regular hospital and medical appointments, especially if they require regular blood transfusions. Scheduling work around blood transfusions or allowing employees with SCD to work from home when they have appointments may not only benefit them, but may improve their productivity as well. They will feel less stressed knowing that they can go to appointments and catch up on their work later.

Building flexibility into other areas of work can also be beneficial. Formal clothing can be uncomfortable, so adopting a more relaxed dress code might help your employee with SCD to keep warm, feel comfortable and reduce the risk of a painful sickle cell crisis occurring. It could be useful for an employee with SCD to have a heated chair or jacket but if this isn’t feasible, consider the allocation of a workstation near a heating source and away from any cold spots.

Stress

Stress is a recognised trigger and employers can help to reduce stress for someone with SCD. Avoiding excessive monitoring and adjusting deadlines or targets can help, as can allowing employees to work at their own pace. If an away day or team building exercise is planned, it is important to consult the employee about how the team might minimise stress so the employee can participate fully in the activity.

Temperature

People with SCD need to keep warm and employers can make reasonable adjustments to support this. Providing health and safety inspected individual portable heaters can make a big difference and consulting employees about the use of air conditioning is important. Employers can ask an employee with SCD if they would benefit from a heated chair or jacket and placing them near a heating source, as far away from the cold outside can make life easier for the employee with SCD.

 It can be useful to create a worker individual support plan in consultation with an employee who is living with SCD. It is a condition that is different for each person and can be complex with some people have more severe symptoms than others. A worker individual support plan can help in managing SCD in the workplace. It should be reviewed annually, or as needed, and should cover:

  • Preventive measures to keep the person well at work
  • Arrangements for working whilst taking pain medication
  • What constitutes an emergency and what to do
  • Key contacts
  • The consultant who is the key health professional caring for the worker
  • A list of workplace colleagues who have attended a professional update on sickle cell

Sickness absences

SCD is a chronic, life-long and unpredictable condition and a worker may have a series of absences. Applying HR sickness absence interviews and triggering disciplinary warnings for each sickle cell related absence could be regarded as “discrimination arising from disability”. 

An employer may have to adjust their sickness policies to ensure that they do not penalise people with SCD unfairly. This should be done alongside making adjustments that might reduce the risk of triggering illness and together with the worker’s individual support plan. 

If an employee is hospitalised for a sickle cell crisis, they may need a week after discharge to recover. Returning to work too soon may cause a relapse and further time off work. 

Allowing a family member or nurse to provide sickness notification will help while the employee is in extreme pain or on opiate drugs. It is also helpful to allow the employee to text or email their notification.

Pain

SCD creates uncertainty. Painful crises can come on suddenly and the pain can make a person unresponsive, uncooperative and moody. It is vital that the person’s team recognises this and have a worker’s individual support plan so that everyone knows how to support the employee. 

Medication

The worker’s individual support plan should include procedures for health and safety and assessing the suitability of different roles such as operating machinery or driving when an employee is taking strong painkillers. To help keep the person in work, employers can combine pain medication with rest, or time out in a safe environment so they can return to work later in the day. Opiate painkillers, used for severe pain, can impair decision making.

Medical Appointments

People with SCD may have regular medical appointments to help them manage their condition. If they are taking anti-sickling drugs, they may need to be monitored regularly. Some people have regular exchange blood transfusions which require attendance at hospital for cross-matching as well as attendance on the day of the transfusion. They may be tired the day after a transfusion and need a day off. A good employer will not count these as sickness absence or holiday or deduct pay for time spent on appointments, although it is not definite that they have to do this under the Equality Act 2010.

Blood Donation

Employers can encourage their employees to give blood. This will support people with sickle cell disease and other conditions and help to raise awareness about the importance of blood donation generally.

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)