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Working with a life-limiting or terminal illness

If you have been diagnosed with a life-limiting or terminal illness, one of the things you need to manage is how it will affect your work.

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 doctor will have given you an idea of what to expect and there are trustworthy sites such as NHS.UK which can provide all sorts of helpful information. There are charities dedicated to different conditions that can provide more information and practical support as well.

You may have counselling services at work. If your employer is signed up to an Employee Assistance Programme (EAP), you will have free access to a 24-hour confidential helpline offering information and advice.

Depending on which provider they work with, you may be able to ask for face-to-face counselling sessions. As part of the Compassionate Employers Programme, your line manager and human resources (HR) team will be able to direct you to various online resources for you to access if you want.

Find links to these in our useful resources section.

"I’d like a bit more time but I know there are no guarantees for anyone."

You may need to factor in treatment regimes which need dedicated time. The treatment itself may be tiring or might make you feel ill. At some point you may also need supportive equipment such as a wheelchair.

Each condition is different and each person will deal with their situation in their own way. It is up to you how much you want to share with your line manager, though a good working relationship will make this easier.

The more you feel able to share the better they will be able to support you, and the better you will be able to manage issues such as workload.

One conversation is unlikely to be enough. Conditions can develop unpredictably, and when you have a new diagnosis, you may not know quite what to expect.

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.

You will become the expert of your own condition and how it affects you.

Carrying on and stopping working

Sometimes it can feel as though you are swept up into a health service system which takes over control of your life. Carrying on working while you want to will help you maintain a sense of control and independence. There is helpful guidance on:

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.

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.

If you belong to a union they will also be able to advise about your legal rights.

Long-term sick leave

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 a flexible communication schedule so you both feel reassured about when the next catch-up will be.

Disability

As they progress, life-limiting and terminal illnesses can become disabling. Some conditions are automatically treated as a disability, including:

  • Cancer – including skin growths that need removing before they become cancerous
  • Multiple Sclerosis
  • An 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.

Mental health

It can be stressful dealing 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.

NHS.UK has helpful information about how to cope with a life-limiting or terminal diagnosis.

Stopping work

If you reach the point where you need or want to give up work, your HR team will be able to advise on any schemes your organisation offers such as:

  • income protection
  • ill health retirement
  • whether you can take your pension early.

They will also be able to signpost you to other options for financial help, such as what benefits you may be entitled to.

 

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