If you are a carer for someone living with EB and also have a job, you are not alone. According to Carers UK, there are more than six million carers in the UK. The information below aims to help you understand your rights in the workplace whilst acting as a carer.

If you need support, contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.



Know your rights

Caring for someone else and working can present a unique set of challenges, so it is very important to know your rights and to receive the right support as a carer. Everyone’s situation is unique, but there are two main sources where you can find out more about your specific rights:

  • Statutory rights – these are rights that apply to everyone (e.g. Equality Act 2010).
  • Contractual rights – these are the rights stipulated within your employment contract, which can vary between employers and may even sometimes be more generous than statutory rights.

Download the Carers UK Your rights in work (June 19) factsheet for more information. 

Flexible working

Flexible working may be one way in which you can help manage your work and caring responsibilities.

All employees have the right to request flexible working, but this will depend on a number of factors:

  • You must have been an employee with the same company for at least 26 weeks (6 months)
  • You cannot have made a request for flexible working in the previous 12 months (only 1 request is allowed per year)

When requesting to work flexibly, you should consider your own circumstances but the impact this may have on your employer. For instance, you may request one of the following:

  • Working from home
  • Part-time or term-time working
  • Condensed, staggered or annualised hours
  • Flexible hours, shift work or job sharing


Time off in emergencies

There may be times when you need to deal with urgent or emergency situations (e.g. sudden onset of illness). All employees have the right to take a reasonable amount of time off work to deal with an emergency involving a dependant (e.g. partner, child or parent, someone else who relies on you for help). The time taken is unpaid unless stated otherwise in your employment contract.

If you choose to tell your employer about your caring responsibilities, they may be more supportive should you need to take time off for this purpose. If several employees also disclose they are carers, it might prompt a review of existing policies so they can offer more protection and support.

Examples of emergency situations
  • Carer unavailability – e.g. when you are required to stay home and help manage your dependant’s care
  • Illness – e.g. when the dependant may fall ill
  • Making arrangements – e.g. when you have to arrange longer-term care for a dependant who is ill or injured
  • Urgent situations – e.g. when your child has a situation during school hours

It is important to create a back up plan if you are no longer able to care for your dependant or if they are no longer able to receive care (e.g. carers not available). Carers UK has good advice on creating an emergency plan.

Workplace discrimination

Workplace discrimination and harassment because of your caring responsibilities is not allowed. Your rights are protected by:

In some cases, carers may also have rights under disability and sex discrimination legislation.

Parental leave

Employees have the right to 18 week’s parental leave per child, so long as:

  • You are responsible for care of the child (or children)
  • The child is (or children are) under 18 years of age
  • You have worked for the same employer for at least 12 months

The time taken is unpaid unless stated otherwise in your employment contract.


The Care Act 2014

The Care Act 2014 outlines a number of rights available to all carers, including a practical and financial support.

Carer’s Assessment

Any carers over the age of 18 can ask for a free carer’s assessment. The carer’s assessment is essentially a wellbeing check to look at how well you are coping whilst looking after someone else.

By arranging a carer’s assessment, you can explore what your needs are and what different types of support are available to you – from emotional assistance to practical help, including gym memberships for stress relief, help with gardening and housework, getting extra help from a paid-for carer and more.

The carer’s assessment is managed at the local level, so you will need to contact your local council to request the assessment. If you are a young carer (under the age of 18), you should still speak to your local council to see what additional support they can offer.

Visit the NHS website for more information about the carer’s assessment.

Carers Allowance

If you are caring for someone for 35 hours or more per week, you may be eligible to receive a Carer’s Allowance of £67.25 per week (2020-2021).

You will need to meet certain criteria to be eligible for the payment (e.g. age, residency) but we encourage all carers – especially informal carers, such as a parent looking after a child – to consider applying.

This allowance is not means-tested; however, there is a limit to how much you can earn from work and still be entitled to the payment, which may also be taxable.

Read the Carers UK guidance about carer’s allowance for more information.

If you live in Scotland, you may be eligible for the carer's allowance supplement and young carers in Scotland may also be able eligible for the government's Young Carer Grant.


Checklist for working carers

  • Understand your rights – make sure you are treated fairly under the Equality Act 2010 and in line with your employment contract.
  • Seek support – talk with your employer to see if they would be able to help in any way (e.g. flexible working) or contact your DEBRA EB Community Support Manager.
  • Book a needs assessment – request a needs assessment for the person you are caring for, as well as a carers assessment for yourself.
  • Organise care – look for professional carers and also family and friends that can help with regular support.
  • Request financial help – you may qualify for a carer’s allowance or a local or national grant; talk to your DEBRA EB Community Support Manager for more information.
  • Take a break – make sure to look after yourself so that you are emotionally and physically able to care for your dependant and also have a quality of life yourself. Consider taking a respite break in one of the DEBRA Holiday Homes.
  • Get help from technology & equipment – do some research and see what technology or equipment could help you, either for yourself or for your dependant to help with caring responsibilities. Carers UK has a section on their website dedicated to technology & equipment.


Useful resources

  • ACAS - free and impartial advice on workplace rights, rules and best practice
  • Carer Support Centre – providing information on your rights as a carer (especially relevant for those living in Bristol & South Gloucestershire)
  • Carers Trust – charity providing information and support for carers
  • Carers UK – factsheets and downloads covering a wide range of topics for carers
  • Irwin Mitchell Solicitors – law & human rights solicitors providing resources and factsheets
  • Turn 2 Us – charity dedicated to helping people through financial support