Djena living with sickle cell disease smiling and looking up

EMPLOYMENT AND EDUCATION SUPPORT FOR SICKLE CELL

Knowing your rights and getting the support you need

If you live with sickle cell disease, you may have had to take time out of work, or found your disease has an impact on your life at work. This may have caused you stress or anxiety. It’s important to remember that you should have the same opportunities as everyone else.

Support may be available to you in the workplace and the more you know about what’s available, the more secure you can feel getting on with your job.

Renna looking at her phone, two hands holding a love heart

If you have a specific concern about work, you can find support groups and other support services near you that can help. Your local patient organisation might also be able to provide support and advice.

John living with sickle cell disease making notes

Getting a good start: support for school or college

If you’re still at school or college, you may face challenges that may impact your education. It takes time and effort to manage your sickle cell disease, and this may mean you miss out on opportunities.¹ Telling your school about your sickle cell disease can help you get more support and make sure they understand why you might be absent from time to time.¹

It’s also important to think about how being at school might affect your sickle cell symptoms and whether changes can be made to limit this. This might include:

having access to water to stay hydrated at all times
limiting strenuous exercise or being excused from PE lessons – this might be due to symptoms such as pain or in extreme weather if sports sessions are out of doors
ensuring the classroom is well ventilated and heated as people with sickle cell disease need to keep a stable body temperature

Your teachers and peers at school may not understand sickle cell disease or the effect it has on your life. But it’s important to always let them know what support you need to lessen its effect on your education if you feel comfortable to do so.¹

It’s worth remembering that, under the 1974 Health and Safety at Work Act, your school has a responsibility to have a health and safety policy for pupils with medical conditions (like sickle cell disease).¹ Make sure to know your rights now, so you can build the confidence to ask for support when you need it. This will make it easier to do the same when you go out into the workforce.

Whatever challenges you face, it can help to understand your rights and know what support you can ask for, so you can keep moving forward with your education and career.

Djena living with sickle cell disease looking into the camera

Is sickle cell disease a disability in law?

The UK Equality Act 2010 [part 2, chapter.1;6] states that a person has a disability if they have a ‘physical or mental impairment’ (part of your body isn’t working as well as it should, or you suffer poor psychological health), and this affects the person’s long-term ability to carry out normal day‐to‐day activities.²

Your diagnosis of sickle cell isn’t automatically seen as a disability, but it meets some of the guidance that is given in this area.^2,3

For example, if normal day‐to‐day activities like walking, long hours, lifting loads, or shift work cause you pain or make you tired, then this would be seen as meeting the definition of a disability. Also, if the chronic pain that is part of your sickle cell makes you depressed, this change to your emotional wellbeing would legally meet the definition.³

You also have rights under the 1996 Employment Rights Act. With the appropriate support from your employer, it’s perfectly possible for you to carry out your job in a way that is comfortably manageable.^2,3

What adjustments can you ask for?

People at work may not understand sickle cell or the effect it has on your life. But it’s important to always let them know what support you need to lessen its effect on your work if you feel comfortable to do so.

You are entitled to ask for adjustments to be made to help you carry out your work so that you’re not put at a disadvantage.³ This might be certain equipment you need to do your work, such as a specialist chair, or you might need your workplace adjusted to help you carry out your work. For example, you might need a cold office to be warmer so that it doesn’t bring on painful sickle cell crises.

Here are some examples of good practice at work that you could discuss with your employer.

Flexible working/working from home

If you have anaemia alongside your sickle cell, you might get tired easily. Nighttime pain can also stop you sleeping well, making you even more tired.³ Flexible working with late start times, can help with this. If you have regular blood transfusions, you may be more tired in the week before a transfusion, so arranging for your workload to reduce ahead of this may help.³

Reduction of stress

As you know, stress can be a trigger for your sickle cell. Ask your employer if they can be flexible about targets and deadlines so that you are not under undue pressure.³

A warm workplace

It’s important that you stay warm to stay well. Ask your employer about keeping the temperature of your workplace at a temperature that works for you. You may want to discuss any air conditioning and/or where your desk is positioned. It may also help to talk about the kind of clothing that you can wear to work to help you keep warm and comfortable.³

Personal support plan

Creating a personal support plan with your employer can be a good idea. Different people are affected by their sickle cell in different ways and a personalised support plan can take this into account.

Your employer, someone from HR, an occupational health nurse, someone from your healthcare team (such as the local sickle cell specialist nurse) and yourself can all work together to create this plan. It could include the arrangements you’ve agreed to help you work more comfortably, how to support you when you are in pain, as well as what to do in an emergency.

Your plan should also include contact details for a key member of your healthcare team that your employer can contact if needed. This plan should be reviewed every year or as needed, since your needs may change.³

Can I access further financial support?

If you don’t work full time or you’re not currently working, you might want to see what other support is available to you. You can apply for various benefits support, such as Universal Credit and Personal Independent Payment (PIP).⁴

Understanding what you are eligible for and how to apply can be complicated. You can ask for support from your healthcare team with this. A social worker or benefits adviser can talk you through your options and the process.

Keep talking with your healthcare team

How you choose to manage your life with sickle cell disease is personal. Keep talking with your healthcare team about ways of managing your physical and emotional wellbeing within the workplace.

Remember that you have rights at work. If you feel you have been unfairly treated, there are services that can provide advice and support. Check out our Community page to see what support is available near you.

Let's talk about support in education and employment

Resources:

Top tips for self-management
Your wellness journal
Setting goals that work for you
Getting the most out of your healthcare appointments

VIEW ALL RESOURCES

References

Sickle Cell Society. Sickle cell and thalassaemia: A guide to school policy. 2011. www.sicklecellsociety.org/supporting-young-people-sickle-cell-school-guide/ Accessed May 05, 2023.
Equality Act 2010, c 1. Available at: https://www.legislation.gov.uk/ukpga/2010/15/section/6/ Accessed May 05, 2023.
Sickle Cell Society. A guide for employers and employees on work, employment and sickle cell disorder (SCD). https://www.sicklecellsociety.org/resource/employment/. Published 2019. Accessed May 05, 2023.
Sickle Cell Society. Standards for the clinical care of adults with sickle cell disease in the UK. 2018. www.sicklecellsociety.org/sicklecellstandards/ Accessed May 05, 2023.