It can be difficult knowing what to do about work when you have a terminal illness. However there are laws in place to protect you, which we explain on this page.
Your rights in the workplace
If you are employed and have been given a terminal diagnosis, you might want to think about:
- Whether to carry on working, and what you might need if you decide to do so
- Telling your employer and your colleagues about your illness
- Stopping working for good, and how this might make you feel
You might have concerns about telling your employer, however terminal illness is considered a disability by the law. This means you cannot be discriminated against because of your illness.
InEngland, Scotland and Wales you are protected against discrimination by the Equality Act 2010, and in Northern Ireland it’s the Disability Discrimination Act 1995. As well as protecting employees, these laws also protect people applying for jobs.
Both these laws state that your employer must make reasonable adjustments so that you can do your job. This can include flexible working hours and working from home. There is no set rule regarding what a reasonable adjustment is, and it should be agreed between you and your employer.
There is a very detailed guide to reasonable adjustments and what to do if your employer doesn’t meet your needs on the ACAS (Advisory, Conciliation and Arbitration Service) website.
If you’re self employed
If you are self employed, you might want to think about:
- Whether someone else can run the business if you need time off or to stop working
- Telling your clients about your illness
- Financial support if you need to stop working
You could think about making changes that will make things easier while you work, such as changing your hours, and the type or amount of work you take on.
You may not have the same legal protections as someone who is employed, unless you are working under a contract that includes these protections. If you have any concerns or think you have been treated unfairly you can get in touch with the Equality Advisory and Support Service.
If you’re worried about finances, taxes, debts, or any other aspects of being self employed, visit:
- the Business Support Helpline for your region
- Business Debtline if you live in England, Wales and Scotland
- Citizens Advice if you’re in Northern Ireland
- a financial adviser
The government has several types of support you can access depending on your circumstances:
- Personal Independence Payment (PIP) is a monthly payment for people who have a long-term illness. You can claim PIP whether you are employed, self employed, in work or not, and the amount will depend on how serious your condition is and your needs.
- Employment and Support Allowance (ESA). You might be able to claim ESA if you have a disability or health condition that affects how much you can work. You can apply whether you’re working or not, but will only be eligible if you work less than 16 hours a week.
- Access to Work. This scheme can help pay towards equipment or other support to help you continue working, whether employed or self employed. This can include travel costs if you can’t use public transport, and a support worker to help you in the workplace. There’s more information and easy read fact sheets about this on the government website.
- Statutory Sick Pay. If you become too unwell to work you might be entitled to Statutory Sick Pay. This is paid by your employer for up to 28 weeks. You might be able to claim ESA once this payment ends.
There may be other benefits you can claim depending on your circumstances, such as Universal Credit, help with energy bills and housing benefit. For more information visit the governments page on getting benefits when you’re terminally ill.
Other financial support
Some companies have their own sick pay scheme, called ‘contractual’ or ‘occupational’ sick pay. If your company offers this there should be details in your employment contract.
If you have a workplace pension, you might be able to withdraw some or all of it depending on your circumstances. Find out more about accessing your pension early on the government’s website.
Many workplace pension schemes include life cover, which will give payment to whoever you choose after you die. Your workplace might provide you with life cover even if you do not have a pension. Check your employment contract or with your HR department.