Information on understanding life-limiting and terminal illnesses, your rights at work, asking for working adjustments, financial support and stopping working.
If you have been diagnosed with a life-limiting or terminal illness, one of the things you may be worried about is how it will affect your work.
Receiving a diagnosis
Receiving a life-changing diagnosis can bring a lot of emotions. You may be scared, shocked or feel unsure of what to do next. No matter what your diagnosis, it’s important to remember that help is available and you don’t have to go through it alone.
For lots of us, work is a big part of our lives. If you’ve received a life-limiting or terminal illness diagnosis you may be concerned about how this will affect your working life. You may need to adjust your work patterns or you may want to leave work altogether. This page can help you understand your rights, some of the options available to you and where to go for help.
This page may also be helpful for those supporting someone who has recently been diagnosed.
What is a life-limiting or terminal illness?
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A life-limiting illness is one which cannot be cured, though it can be treated, and which will shorten a person’s life.
A terminal illness is one that is incurable. However the effects of the illness can be managed so that a person can live with it for days, weeks, months or even years.
Your rights at work
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Everyone is different, and you should do what feels right for you. Depending on your diagnosis you may want to stay working as normal or make some adjustments to your work such as different hours. You may choose to stop work when the time feels right.
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.
In England, Scotland and Wales you are protected against discrimination by the Equality Act 2010, and in Northern Ireland by 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.
There are people you can talk to inside and outside of work that can help:
Your HR department
A trade union, if you’re part of one
The Government website can provide advice and guidance for your local area.
Your doctor and/or NHS.UK for diagnosis information
Dedicated organisations such as Citizens Advice
Your Employee Assistance Programme for emotional support. If your employer has one
Terminal illness helplines such as Marie Curie 0800 090 2309
If you’ve been with the same employer for 26 weeks, you can request flexible working. This isn’t a guarantee but employers must consider it.
You may also discuss different working arrangements that help you manage your diagnosis. Again, this isn’t guaranteed and there’s no set rules for it. However, your employer should try to accommodate your needs as much as possible.
Some examples may include:
Working from home or a more convenient location
Changing your working hours, such as starting later or working around appointments
Providing you with additional equipment to make your workstation more comfortable
Adjusting your work responsibilities or duties
Taking a break from work
You can discuss these with your manager or HR team and make a plan together that works for both you and your employer.
As they progress, life-limiting and terminal illnesses can become disabling. This means you should be protected against discrimination by law. Some conditions are automatically treated as a disability, including:
Cancer – including skin growths that need removing before they become cancerous
Multiple Sclerosis
A HIV infection – even if you don’t have any symptoms.
Your employer has legal duties towards disabled staff and they will need to make reasonable adjustments to help you carry on working. Reasonable adjustments can cover all sorts of things, such as:
Changing hours of work, permanently or for a short while, if you are going back to work after being off sick
Changing work duties – for example reducing your workload if you have work-related stress
Allowing someone with back pain more breaks to allow them to stand and move away from their desk
Providing a chair with the right support
You will want to discuss this with your line manager to sort out what you need. Once you have had a discussion you could write to your line manager so they have something concrete to work through with your HR team and occupational health.
A diagnosis can be very personal, and in most cases you don’t need to tell your employer or colleagues if you don’t want to.
The exception would be if your contract or type of work requires you to let your employer know. Your contract or HR department will be able to clarify this for you.
Telling colleagues may feel uncomfortable or scary. You may be worried about how they will react or that they will treat you differently. You may choose to just tell a select group of people.
Letting your colleagues know can ensure that you get the best support at work. They will likely want to help.
Some people prefer to let their manager share the news with their colleagues. However, your diagnosis shouldn’t be shared without your permission.
Financial support
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Deciding to reduce your working hours or leave work can bring up financial worries. The government has several types of support you can access depending on your circumstances.
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.
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.
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.
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.
If you’re currently employed and too ill to work you might get paid sick pay by your employer for up to 28 weeks. 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 currently pay into a workplace pension or have previously, you may be able to receive your pension early if you are terminally ill. This is often referred to as an ill health policy. Your HR department or pension team will be able to clarify your pension policy.
Deciding to carry on or stop working will be up to you. It is likely that you will want to carry on working for as long as possible. This can be good for your own outlook and mental health. It is good for your organisation too, as it will still have your valued skills and experience.
You may need to factor in treatment regimes which need dedicated time. The treatment itself may be tiring or might make you feel ill. You may find that your first prediction about how well you’ll be able to manage your work is over-optimistic, so be prepared to revise plans over time in light of what actually happens.
Even so, you may reach a point where you want to stop, either because it becomes too difficult to cope with both the illness and your work, or because you want to spend your time and energy with your family.
Your HR team will be able to help you decide when and how to do this. They will be able to advise about the financial aspects of leaving work, including your pension, and they will be able to signpost you to other options for financial support such as benefits. If you are in a workplace income protection scheme, HR will let you know how to claim.
Long-term sick leave
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If someone is off sick for more than four weeks it counts as long-term sick. It might help you to come back to work from long-term sick leave if you don’t have to work full-time.
You could arrange a phased return, or ask to work flexibly or part-time, or to move to doing different or less stressful work. Speak with your line manager about flexible-working opportunities.
Your line manager will want to keep in touch while you are away so that you can plan together when and how you will be able to return. It is good to decide on a flexible communication schedule so you both feel reassured about when the next catch-up will be.
You shouldn’t be fired or made redundant because of your diagnosis. Your employer also shouldn’t try to make you retire early or resign.
You can be let go from work if there are concerns that you cannot fulfil your work duties. However, there must be a fair process and adjustments should be considered first wherever possible.
If you think you are being treated unfairly and want to seek advice outside of work, there are places to go for help:
It can be stressful and emotionally draining to deal with a life-limiting or terminal illness. Carrying on working can help your mental health, but it can also bring its own stresses.
Don’t be afraid to discuss these issues with your line manager; they will want to be as supportive as possible, helping you to manage your work as well as your condition.
For example, if travelling to work has become difficult it might be possible for you to do some work from home. If your employer has signed up to an Employee Assistance Programme, you may be able to receive telephone or sometimes face-to-face counselling.
