Factsheet – Sickle cell disease

This resource is part of our Disability Essentials range. You can find the other free resources that are included in this range by clicking here.

What is sickle cell disease?

Sickle cell disease is a group of inherited conditions that affect the red blood cells, of which sickle cell anaemia is the most serious. The disease affects the shape and flexibility of the red blood cells. These damaged red blood cells can cause blockages in smaller blood vessels and restrict the flow of oxygen to all parts of the body.

Sickle cell disease can affect anyone, but is most common in people with an African or Caribbean background.

Approximately 15,000 people in the UK have sickle cell disorder.

Treatment of sickle cell primarily focuses on preventing and treating complications of the disease. New-born babies are usually screened for the disease. This enables prevention strategies, and monitoring can be introduced early, thereby helping to reduce the risk of long-term damage.

Sickle cell disease can be cured by bone marrow transplant, but this has its risks and finding suitable donors can be difficult.

How does sickle cell disease affect an individual?

Sickle cell disease can range from mild symptoms to severe. Each person’s experience will be different.

The main symptoms and possible complications of sickle cell disease are:

• anaemia due to reduced oxygen in the blood. This commonly causes tiredness and shortness of breath.
• increased risk of serious infection
• strokes due to blocked blood vessels
• sight loss
• damage to bones
• problems with their lungs, heart, liver and kidneys
• sickle cell crisis – an acute and excruciating episode that can last up to a week.

A sickle cell crisis can be triggered in various ways, including:

• dehydration
• exposure to cold
• sudden temperature changes
• high altitudes
• very strenuous exercise
• stress
• infection.

Managing a sickle cell crisis

An employee with a crisis will become suddenly unwell or complain of severe pain in the chest or abdomen or may have a severe headache, stiffness in the neck, or be drowsy.

If you suspect an employee with sickle cell anaemia is having a crisis, you may need to arrange for the individual to visit a hospital for urgent medical treatment. Develop an emergency action plan with the employee about what will happen in the event of a crisis in the workplace.

Potential impact on work

Sickle cell disease can range from mild to severe and will be different for each individual. For many people with sickle cell disease, the impact on work will be minimal or have no impact at all. Those with the disease are usually very proactive in managing their condition.

There may be times when the employee may have to take time off work or work from home due to their symptoms or an increased risk of getting an infection.

There may be an impact on work from the physical effects of the disease, such as fatigue or reduced mobility.

Legal duties

The Equality Act 2010

In the UK, employers have legal duties to:

• prevent discrimination, and
• provide reasonable adjustments

for their disabled employees. This means it is unlawful for employers to treat applicants, job candidates and employees unfavourably because of their disability.

The Equality Act also requires employers to make ‘reasonable adjustments’ for their disabled employees.

For more information, see our ‘Briefing – Adjustments in employment’.

Suggested adjustments

Most of the adjustments suggested are aimed at preventing a sickle cell crisis. These include:

• It is a good idea to discuss with an employee, as soon as possible, their potential needs for them to manage their condition in the workplace successfully. This discussion should include agreeing on a plan of what to do if the person develops a sickle cell crisis at work.
• Enabling the person to have access to fluids to prevent dehydration.
• Providing a fan and heater if required.
• Avoiding very strenuous activities which cause the person to become seriously short of breath.
• Stress prevention – this can be through stress risk assessments, in addition to regular reviews about workload and work pressures.
• A flexible approach to working hours and locations, especially if there is an increased risk of infection within the workplace, such as an outbreak of norovirus, flu, or COVID-19. In these cases, start and finish times to avoid busy public transport may be a solution. Working from home during these periods may also work well.
• Having good hygiene and infection control practices in the workplace will reduce the risk of catching an infection for everyone, not just those with sickle cell disease. This can include access to cleaning wipes for work equipment and shared kitchen areas.
• Work-related travel. A risk assessment should be completed in good time, especially before any foreign trips. Many travel vaccines require a few weeks to become fully protective, and it is essential to factor this into any business travel plans. Fatigue and stress should also be considered in any work-related travel to avoid a ‘crisis’.
• Allow time off to attend appointments related to the assessment, treatment, and management of sickle cell disease.
• Ensure that you have a scheme in place that distinguishes between an absence taken for a reason relating to a disability and general sickness absence. Sickle cell disease should be treated as a disability for these purposes.
• Sickle cell disease can affect a person in many different ways, and there may need to be symptom and barrier-specific adjustments for each person. For example, providing accessible parking if the person experiences pain due to their condition or requires additional software due to sickle cell-related sight loss.

Further information

For more information on suggested adjustments, specific barriers for sickle cell and information about the law, please see our other resources in the Knowledge Hub.

For more detailed information and advice about a specific situation, contact the Advice Service:

Tel: +44-20-7403-3020 | Textphone: +44-20-7403-0040

Email: advice@businessdisabilityforum.org.uk

Sickle Cell Society

54 Station Road

London

NW10 4UA

www.sicklecellsociety.org

Phone: 020 8961 7795

Textphone: 020 8961 8346

Email: info@sicklecellsociety.org