Talking to someone who is still working

Please be aware - this information is for healthcare professionals

Some people will be diagnosed with a terminal illness while they’re still working. They may be anxious about managing at work, and how long they should continue. The financial impact of being ill can be another common worry.

Use the discussion points below to start talking to the patient about their circumstances. They may help you understand the person’s needs, give you the opportunity to provide a listening ear, and help them find the information they need to make informed choices about their life.

Use your expertise and judgment on what’s appropriate in order to develop a rapport with your patient. These points should be used as a guide, not a checklist.

1. Workplace rights

It’s really important that people living with a terminal illness are aware of their rights in the workplace and that there are laws in place to protect them from discrimination.

The Equality Act 2010 states that a terminally ill person is likely to be considered ‘disabled’ and every employer has a legal duty to support disability in the workplace.

This includes making reasonable adjustments to accommodate any ongoing needs. These may include flexible working arrangements, such as working from home, possibly reducing the person’s working hours and allowing time off for medical appointments.

Some people may be concerned that they may lose their job because of their illness. So it’s very important that the patient is aware that their employer is expected to make reasonable adjustments for them, and that their illness should not be a reason for dismissal.

You can encourage the patient to read our information about working with a terminal illness. They can also contact the Marie Curie Support Line on 0800 090 2309.

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2. Telling an employer about a terminal diagnosis

While some people may have told their employer about their circumstances, others may be reluctant to. This could be due to privacy reasons, or a desire to ‘carry on as normal’. Some people may also fear losing their job, or being discriminated against at work.

The Equality Act 2010 states that a person living with a terminal illness is likely to be considered ‘disabled’ and so doesn’t have to tell their employer about their condition unless it may pose is a health and safety risk to the patient or other employees.

However, the patient may find their employer is able to be more supportive if they know what’s going on. For example, the employer could make reasonable adjustments, like offering flexible working arrangements or time off for medical appointments, if they’re aware the patient may need this.

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3. Telling colleagues about a terminal diagnosis

It is up to your patient whether they tell their colleagues about their condition. However, the effects of treatment, or the need to take time off, may make it difficult for them not to tell their colleagues eventually.

Friendships at work can be important, and having this conversation with your patient gives them an opportunity to consider how they’ll manage these relationships. Even the most well-meaning colleagues may not know what to say or how to act, though, and this may have an impact on the patient.

Unfortunately, workplace conflicts and issues can be a source of stress. If your patient is having problems with people at work, you can encourage them to call the Marie Curie Support Line on 0800 090 2309.

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4. Support from their human resources (HR) department

If someone has a terminal illness, they still have the right to aspire for continued achievement at work. Although HR departments have to adhere to workplace policies, it may be a good idea for your patient to talk to them for support and advice on career opportunities.

The patient’s HR department may also be able to support them in telling managers or colleagues about their illness.

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5. Managing their condition at work

If symptoms like fatigue, pain or breathlessness are making work difficult for your patient, professionals in the care team can probably help. Their employer may also be required, under law, to make reasonable adjustments.

Occupational Health services can also help patients by providing medical reports and defining, on paper, guidance for managing their condition at work. Occupational Health reports are confidential and are for the patient and – with the patient’s  consent – their employer, who is also duty-bound to keep this document confidential.

The patient may feel that they are not physically or mentally capable of doing their job anymore. The patient’s confidence may have been substantively reduced due to their condition. In these cases, you can encourage your patient to speak to their GP, call the Marie Curie Support Line or speak in confidence to their HR department.

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6. Travelling to work

If the patient is finding their commute difficult, their employer may be able to offer helpful changes like flexible hours, time off, accessible parking or working from home. Your patient might also qualify for benefits or government schemes that help with extra travel costs related to their condition, such as taxi fares. Their social worker or GP can give advice, or they can call the Marie Curie Support Line on 0800 090 2309.

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7. Taking time off for medical appointments

The patient should be aware that they can ask to take time off work for their medical appointments or treatment as part of any reasonable adjustment agreement.

Close family members may also be entitled to take a reasonable amount of time off work to deal with unexpected problems or emergencies involving the patient. This time off may not be paid unless it says so in their contract.

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8. Access to Work scheme

This is a government programme that helps people with a disability, health or mental health condition find work or stay in a job. It is also available to people who are self-employed. There is funding for extra costs such as travel, special equipment or having a support worker. This scheme operates in England, Wales and Scotland. A social worker can explain, or we can provide more information on the Marie Curie Support Line on 0800 090 2309.

Access to Work is not available in Northern Ireland, but there are alternative schemes:

  • Pathways to Work: a programme for people in receipt of Incapacity Benefit, which aims to help them start or return to work.
  • Condition Management Programme (CMP): a support and advice scheme delivered by healthcare professionals who help clients understand and manage their conditions to help them get back to work. If the patient is receiving Incapacity Benefit, Income Support based upon incapacity or Severe Disablement Allowance, they may be able to join CMP.

You can find more information on these two programmes by contacting the patient’s local health and social care trust.

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9. Giving up work

Thinking about a time when their condition or illness will severely impact their working life may be very difficult for some people, so it’s important to be sensitive.

For some people, work is not only a way of maintaining financial security, but also important for self-esteem and personal satisfaction. The patient’s job may be something they enjoy and that they consider to be a huge part of their lives.

It’s important for the patient to have a plan and get good professional advice on issues like pensions, insurance and other employee benefits before they resign or retire. Your patient can talk to their social worker or speak to the Marie Curie Support Line on 0800 090 2309 for information.

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10. Financial support

The patient is likely to be concerned about the financial impact of living with a terminal illness. This may influence the decisions they or their family make about work. Knowing what their options are financially can help.

It may be a good idea for the patient to contact their employer’s HR department and ask for the Sick Leave and Sick Pay Policies, so they can understand how time off work may affect them financially.

If leaving work is best, there may be other financial options, such as drawing their pension early. They and their carer (if they have one) may also be eligible for benefits.

You can encourage the patient to read our information for people living with a terminal illness and their carers about financial help. They can also contact the Marie Curie Support Line on 0800 090 2309.

Remember to use your judgement about when it’s appropriate to talk about finances.

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