Supporting the

Neuroendocrine Cancer Community

Work and Neuroendocrine Cancer

One question many people ask after a diagnosis is ‘Will I be able to keep on working?’ The answer depends on your individual situation, of course, but often people are able to keep working for many years with Neuroendocrine Cancer.

You do not have to inform your employer of your diagnosis, but it may help if you need to take time off now or in the future – for appointments or treatments. However, before you do so, it may be worth checking your employment contract and discussing your situation with an advisor, from Citizens Advice Bureau, Maggie’s Centre, Macmillan or your Professional Union.

Most employers are supportive, however, others may not be. You are protected by law from unfair or unreasonable treatment or discrimination at work.

*The Equality Act 2010, or the Disability Discrimination Act 1995 (and its extension, the Disability Discrimination Order 2006 if you live in Northern Ireland), do not just apply to employees – job applicants and the self-employed are also protected.

When you do decide to inform your employer it may be helpful to ask:

  • What policies/information does the company have about this kind of situation?
  • If required how soon can sick pay arrangements be confirmed
  • What kind of reasonable adjustments, if any, might be possible to help me do my job now?
  • Should my health change – what reasonable adjustments may be possible?
  • Can we discuss how or whether others, such as my colleagues, are told?

Once you’ve told your employer about your cancer they have a duty to make ‘reasonable adjustments’ to make sure you are not at a disadvantage because of your illness.

Reasonable adjustments might include:

  • Letting you have time off to go to appointments
  • Changing your job description to remove tasks you may now find difficult
  • Giving you extra breaks to cope with being tired
  • Changing where you work – for example, a change of office or department.

What is considered ‘reasonable’ depends on how much the adjustment will cost, how practical it is and how much of a benefit it will be, but failure to make adjustments could count as discrimination.

Most employers are willing to make changes – for example allowing you to work flexible hours – but if you find that’s not the case it can help to ask a member of your care team to talk or write to your employer. And remember that you have the right to privacy, so if you tell your manager but don’t want your colleagues to know, your manager should respect that.

Talking to Colleagues

It’s up to you who you tell about your cancer at work, but letting people know can help them understand what to expect and what support you might need. If your side effects mean you’re often fatigued, for example, your colleagues may be able to help reduce your workload.

You may find that people act differently or seem awkward – just as you might experience when you tell your friends and family. Being open and letting people know if you’re happy to answer questions or talk about your situation often helps.

Equally, you may decide you would rather not tell people at work. Some people find this is a useful way to cope because it helps this area of your life to feel more normal. If your symptoms or side effects increase, however, it may become more difficult to keep your illness to yourself.

Taking Time off Work

You may need to take days, weeks or a longer period off work during treatment. This may have a financial impact on your life. If you do need to take an extended period off work, it may help to contact an independent financial advisor for suggestions on the best course of action.

If you have private insurance such as income protection cover, mortgage protection or critical illness cover, get independent advice before contacting your insurance company to begin making a claim.

It can also be useful to talk to your manager about what you would like to happen while you are away. You might prefer to forget about work completely while you focus on your treatment, or you might appreciate the odd email letting you know any news. Some people choose to visit work a few times while they are away to keep in touch and to get prepared before returning to work.

Working During Treatment

Depending on the type of treatment you have, and the type of work you do, you might decide to keep working – especially if you’re self-employed.

Ask your care team for advice if you are planning to keep working throughout treatment, and try and put a back-up plan in place if you do need to take some time off.

If You Are Self-Employed

It can be a very difficult decision to take time off if you work for yourself. As well as worrying about paying the bills, you might be concerned about what will happen to the business you’ve invested so much time and energy in building up. Business groups and voluntary organisations offer a range of services to support small businesses, and you may be entitled to claim benefits if your income falls.

Useful contacts if you’re self-employed
For information and advice, contact:

Local Citizens Advice services offer advice from over 3,500 locations, in person and over the phone.

Adviceline – is a relatively new phone service in the UK.
To contact Adviceline:

Returning To Work

If you take time off work but feel ready to return after treatment, it can help to meet up with your manager (and an occupational health advisor, if there is one) beforehand to agree a ‘return to work’ plan.

This is a good opportunity to explain how you are feeling and to discuss any concerns. Many people find a phased return to work is the best option – to begin with you could work shorter shifts or not take on all of your usual responsibilities.

Try to avoid the temptation to immediately pick up where you left off. Allow yourself regular rest breaks and if you start to feel tired, let your manager know. If you feel you need to change the work that you do or alter your job description, you should discuss this with your employer as soon as possible. They have a duty to be flexible to help you carry on working.

If you have been claiming while you were away from work, remember to let the Department of Work and Pensions know that you are working again.

Remember – your employer has a duty to be flexible to help you carry on working.

Taking Early Retirement

Rather than returning to work, you may want to take early retirement either for health or personal reasons. If you do that, it’s essential to take advice from your pension administrator. Talking to an independent financial advisor is also recommended.

Depending on your pension scheme, you may be able to take early payment due to ill health.

If you have a pension scheme connected to your work, you may receive a higher amount of pension if you retire for health reasons, but if you’re still physically able to continue your work the amount you receive could be lowered.

Further information about Early Retirement, Pensions and Finances is available here.

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Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.

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