The guidance sets out what people working with a terminal illness told researchers about their experience and needs at work, what managers need to know, and how to build a positive and compassionate working culture around terminal illness.
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The report recommends six main areas that terminal illness policies should cover:
- Attendance flexibility
- Adjustments to work arrangements
- Managing absence
- Sources of support
- Financial wellbeing
- Stopping and leaving work
It also states that all support around terminally ill employees should follow the principles of compassion, communication and consistency.
The guidance was developed in collaboration with HR leads and occupational health professionals from across different sectors and workplaces, including local authorities, universities, hospitals, charities, retail chains, broadcasting companies and others.
It also draws on contributions of those with a terminal illness, who have shared their experiences – positive and negative – of work after a diagnosis.
Stephen Bevan, principal associate at the Institute for Employment Studies, who has also been working with a terminal cancer diagnosis, emphasised the importance of adjusting work around employees’ capabilities.
Contributing to the report, he said: “There were some practical things I just wasn't able to do when I was having my treatment.
“But one of the things I was really keen to capture was my knowledge, and my know-how, and my connections and so my employer basically said 'Look, we'll get somebody else to do some of these other things you now can't do. We'll bear the expense of that, but what we will do is we'll use you to help coach some of our younger colleagues to make sure we're transferring knowledge from you before you get to the point where you can't make a contribution any more’.”
Bevan said the key to supporting employees with terminal illness is communication.
Bevan added: “Employers must navigate some choppy waters to make sure that those who want to stay at work for as long as possible can do so with dignity and purpose. The key here is authenticity and dialogue.
“For some, staying at work represents a way of connecting with what passes for a ‘normal life’ for as long as that lasts. At the same time, the terminally ill don’t want pity or to feel that they are getting a free pass. A mature conversation with employers about how we can help ‘ramp down’ our working lives is all that is needed.”