A common question for people diagnosed with pulmonary fibrosis is how long they should keep working.

Reviewing your options

If you work full time you might be wondering: ‘how do I know when to stop?’ ‘can I manage financially? or ‘can I get disability or early retirement?’

This decision is personal and involves many factors, often it’s not just about the money but a sense of self-worth and maintaining friendships too.

It might help to discuss different options with your family at an early stage. You may need to weigh up financial considerations against the time and energy you could be using to take care of yourself and doing more of the things you love. View our advice on managing finances.

You may also want to talk to your employer to see if working part time is possible, or check the amount you would receive with early retirement.

Your rights under law

The Equality Act 2010 states that employers must make reasonable adjustments to ensure that workers with disabilities or physical or mental health conditions, aren’t substantially disadvantaged. This applies to people with pulmonary fibrosis and to all workers, including contract workers and business partners. So, if you are able to carry on working and decide to do so, talk to your employer about making any reasonable adjustments you need.

Reasonable adjustments can include:

  • making physical changes to the workplace
  • allowing an employee to work somewhere else, such as on the ground floor
  • providing different equipment to enable people to do their job
  • allowing an employee to make a phased return to work, if appropriate.

However, the Equality Act doesn't force employers to provide part-time work, and the definition of what is ‘reasonable’ can be weighed in favour of the employer when there is no obvious physical impairment, which may be the case with pulmonary fibrosis.

You can get advice on reasonable adjustments from the Disability Employment Adviser (DEA) at your local Jobcentre Plus office, or the Disability Employment Service if you’re in Northern Ireland.

The Equality and Human Rights Commission give more detail about employers’ obligations for disabled workers. You can also find out more about your rights under the Equality Act  citizensadvice.org.uk or acas.org.uk

Government help

If the help you need at work is not covered by your employer making reasonable adjustments, you may be able to get help through an Access to Work grant.

For more information about government help, take a look at our Benefits page.

Personal stories

People’s workplace experiences can be very different. Here, Clare and Huw share their stories

Clare

Clare Beckett is a research scientist and has worked in laboratories for many years. This environment, with its chemicals, gases and elements of manual work, proved increasingly challenging for Clare following her diagnosis with IPF at the relatively young age of 37.

Clare’s job involved for wearing safety equipment such as protective suits and face masks – but these are designed for people’s whose lungs work fully. Because of the risk of contamination, you have to be careful about drinking water in the lab too. However, Clare’s employers at the University of Cambridge were very supportive. Adjustments were made to enable her to continue in her role, and she was given remote access at home when she needed more time to recover from a cough or cold.

When the emotional impact of the diagnosis eventually hit Clare she was also able to take time off and return to work gradually. However, over time her lung function worsened and it became increasingly difficult to control the risks inherent in a lab environment. Clare reduced her hours to three days a week, and the University supported her in looking for an alternative role. She is now working in an administrative post in a different department which encourages flexible working.

While her employer has been supportive, Clare is realistic about the future, and wants to be fair to the University too: “It’s a two way street – they have been helpful and I’ve been able to find a new role, but there may come a time when I just can’t do the job anymore and I want to be honest about that.”

Clare continues to develop new skills, and is continually thinking about how she might need to adapt to ensure that she can still work and have time for her family in the future.

Huw

'I started working for the bank in 1976, but was dismissed last year for not being fit enough for full-time work in a specialist sedentary role: there were no part-time jobs available. I was certified unfit to work throughout the dismissal process, so although it was legal it still felt unfair and frustrating.'

Huw had been finding it harder to breathe when sitting upright at a table or working at a desk, and was finally diagnosed with IPF in 2014. He wasn't ill enough for a retirement package, and having no regular income took some getting used to. Even harder to cope with were the feelings of dismissal and isolation, but becoming a trustee of the Pulmonary Fibrosis Trust, spending more time volunteering and having the chance to help other people affected by fibrosis has helped Huw to cope.

'Could more have been done to help me stay in work? Of course but I have used my time to help others and increasing awareness of these concerns, so there have been many positives from my experience too.'

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