Talking to your employer about EB

If you are working in the UK, you are not required to tell your employer if you have a disability or if you are living with a health condition, but it might be helpful, especially if you think you may require additional support or adaptations to carry out the role. Disclosing personal health information should always be a choice that you have made.

If you need support or advice on disclosing EB to your employer, contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.

Disclosing your EB

If your condition doesn’t have an impact on your work or compromise health and safety, then you may choose not to disclose this. However, it might be helpful, especially if you think you may require additional support or adaptations to carry out the role.

If you are likely to be off sick due to your EB having a disclosed disability will give you additional rights under the Equality Act 2010. Visit the SCOPE website for how these rights may help if sick leave due to EB is required.

If you choose to disclose your EB, it is up to you to decide when is the best time to talk to your employer. You can ask your HR department or line manager to keep this confidential.

Some choose to do this during the interview (if there are very specific adjustments required to be able to do the job) or during their induction period. Some people will wait and see if their EB or managing their EB is at all impacted by their work before having a discussion.

Try not to let it get to the point that your employer raises questions about your ability to do the job, as they might attribute the impact of your EB to your capability at work.

You are protected from discrimination

The Equality Act 2010 protects you from workplace discrimination for any mental or physical impairment that affects your ability to perform normal daily activities. Even though EB varies in type and level of severity, people living with EB often require alternative solutions, particularly after repeated movements (e.g. typing on a keyboard, walking a shop floor).

There are different laws applicable to people living in Northern Ireland; visit the website for more information.

Legally, no one can be discriminated against because of their EB.

Consider telling your employer about your EB if you need …

  • breaks during the day to allow you to change dressings, take pain relief or rest.
  • varied work (e.g. reduced or flexible working hours sometimes, adjusting the duties you are
  • required to undertake).
  • time off for hospital appointments.
  • wheelchair accessibility (and a desk that provides this).
  • specialist equipment.
  • a uniform – e.g. Do you need any adaptations? Do they fit over dressings? Do they cause your skin to blister further? Do you wear specialist shoes?
  • help to manage stress due to anxiety, depression or another mental health condition.

Meeting with your employer

Your employer may have never heard of Epidermolysis Bullosa (EB), so you should consider giving them information that explains the condition and, more importantly, how it affects you. The information should help them understand the support you need and any reasonable adjustments they will need to consider (e.g. adjusting working hours or specialist equipment).

Many employers will allow a colleague or a third party (e.g. support agency worker, charity worker) to join a meeting relating to your employment or workplace rights. If you would like someone to attend the meeting where you plan to disclose your EB, first check with your employer that you are allowed to be accompanied.

You may wish to give your employer a link to the DEBRA website to learn more about EB or download and give the information most appropriate for your type of EB:

Contact the DEBRA EB Community Support Team for more information and guidance or to advocate your needs to your employer on your behalf.

Your employer may have access to an Occupational Health service that can help advise on any changes needed to enable you to carry out your role.

Recommended changes may involve a cost. If there are costs involved in making any required changes or in providing any specialist equipment you may be entitled to a grant from the government’s Access to Work scheme. Your employer might have to incur some of the up-front costs, but the Access to Work scheme can provide help and support in many different ways. There is a different system available in Northern Ireland; visit the website for more information.


How DEBRA can help

If you are worried about when or how to tell your employer about your EB, talk to a member of the DEBRA EB Community Support Team. It is likely that your personal attributes and skills are hugely valuable to a prospective employer. You may have the unique experiences of situations because of your EB and telling an employer about your condition could be an opportunity to talk about your EB in a positive way.

The DEBRA EB Community Support Team can:

  • write a supporting letter to confirm the condition and help an employer understand why a person living with EB may need a change (e.g. be exempt from wearing a face mask, require your work location to be closest to the door/toilet facilities to reduce the amount of walking).
  • support you to access specialist equipment to enable you to do your job (e.g. voice activation software or ergonomic chairs).
  • advocate for you and support you when liaising with job-seeking agencies, HR or other people within your workplace.
  • help you understand if you are eligible for the Access to Work scheme.
  • help you understand your rights and responsibilities if you face disciplinary action or believe that you are being discriminated against because you have EB.

Useful resources