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Someone living with a life-limiting or terminal illness

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.

There are a wide range of life-limiting and terminal illnesses including heart failure, lung disease, Duchenne Muscular Dystrophy and cancer that are no longer responding to treatment.

How the individual is affected will depend on a range of different factors and will change over time. There is the diagnosis itself, the stage the condition has reached and the likely prognosis, as well as questions such as the treatment options.

They may only have a short time to live or they may have years of active life ahead of them.

It is up to the employee how much they want to share with their colleagues, managers and HR but the more they feel able to confide the better the organisation will be able to support them.

People are likely to want to carry on working for as long as possible, which is good for both them and the organisation, but the time will come when they need to stop. HR needs to be able to advise on the financial aspects of giving up work.

Disability

As they progress, life-limiting and terminal illnesses can become disabling. The Equality Act 2010 sets out employers’ duties towards disabled staff. 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 the person doesn’t have any symptoms.

If someone is disabled by their condition, they are entitled to reasonable adjustments to help them in the workplace.

These might be:

  • Changes to policies
  • Changes to working practices
  • Changes to physical layouts
  • Providing extra equipment or support.

All kinds of policies, procedures and ways of working are included as reasonable adjustments  – written or unwritten, formal or informal. They can include:

  • Dress codes
  • Working hours
  • Working practices
  • Recruitment policies
  • Absence policies
  • Promotion criteria
  • Redundancy selection criteria
  • Work allocation.

An employer only has to make reasonable adjustments if they know or could reasonably be expected to know someone is disabled, and that they are disadvantaged because of it.

The first step is a discussion to work out what the employee wants; these conversations could involve HR, their line manager, or occupational health. It is a good idea, following the meeting, to ensure everything agreed is documented.

You could ask the employee to write to you so you and occupational health have something concrete to work through. 

There is no limit on the kind of changes employers can make, but they could include: 

  • Changing hours of work, permanently or for a short while, if someone is coming back to work after being off sick
  • Changing someone’s work duties – like reducing their workload if they 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.

Mental health

It can be stressful dealing with a life-limiting or terminal illness. Carrying on working can help someone’s mental health, but it can also bring its own stresses.

A compassionate employer will want to be as supportive as possible, helping staff to manage their work as well as their illness. Managers may ask for guidance on policies that can make things easier.

For example, if travelling to work has become difficult it might be possible for a member of staff to do some work from home.

Your workplace may offer a counselling service that could help:

  • If your organisation is signed up to an Employee Assistance Programme (EAP), staff will have free access to a 24-hour confidential helpline, offering information and advice.
  • Depending on which provider you work with, they may be able to ask for face-to-face counselling sessions.
  • An EAP can provide support to line managers as well as to employees directly affected.

Alternatively, many charitable organisations provide confidential, usually free, helplines for people coping with particular conditions such as cancer, or help such as online communities for anyone dealing with life-limiting or terminal illness, or bereavement.

Find links to these in the useful resources section.

Long-term sick leave

If someone is off sick for more than four weeks, this counts as long-term sick. They may still be able to return to work, maybe by working flexibly or part-time, or doing different or less stressful work.

Managers may ask HR for advice on the organisation’s policies and on what options might be available, such as whether it is possible to move someone to a different role in the organisation.

Stopping work

A life-limiting or terminal illness may eventually mean that an employee has to give up work. This is likely to be a tough decision. HR needs to be able to advise on any schemes the organisation offers such as income protection, ill health retirement, or whether the employee can take their pension early.

Difficult conversations

Employees don’t have to tell the organisation about a diagnosis even if it is life-limiting or terminal, but a sign of a compassionate employer is that they feel confident to do so.

This can involve difficult conversations about uncomfortable topics. The Hospice UK Dying Matters campaign produces helpful guidance about how to go about this, which HR can signpost line managers to.

These conversations will lead to practical outcomes and plans for how employees will manage their work alongside their illness. One aspect of planning which line managers can helpfully signpost to is planning for future care.

This prompts individuals to think well ahead of time about issues such as treatments they would or would not like to have, where they would like to be cared for, and what sort of funeral they want.

These may only be tangential to their life at work but they allow people to take charge at a time when they may feel control is slipping away from them. The peace of mind this can bring will help them at work as well as elsewhere in their life.

For an employee with a life-limiting or terminal illness,

HR can help in particular with:

  • workplace adjustment, including working from home
  • long-term sick leave and disability rights
  • taking pension early
  • insurance schemes.

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