TV presenter Jonnie Irwin supports calls for greater employment protection for dying people

• Research says more needs doing to protect terminally ill workers

• Current guidance levels are "an employer lottery"

• Fewer than half of employers have policies for employees with terminal illness

Jonnie Irwin is supporting charity calls to improve protections for people who are terminally ill but wish to carry on working.

The presenter was diagnosed with terminal cancer in 2020. His main contract was not renewed after confirmation of his condition, despite Jonnie wanting to continue working.

Today, he is supporting research from the end of life charity Marie Curie and the What Works Centre for Wellbeing.

The work highlights the need for employment legislation and guidelines to be reviewed to make sure safeguards are in place to support and protect terminally ill workers. In addition, it says there is a role for employers to play in having a framework in place to support their staff.

Jonnie says: "When I received my diagnosis I wanted to keep working. My first concern was my family and making sure they are comfortable after I'm gone.

"Everything changes when you're told you don't have long left. Things feel like they are sliding away from you but working is one way of retaining some control. It gave me purpose. And I want to hold on to as many things as possible that give me a sense of normality.

"I also loved my job. I still had goals, ambitions and things I wanted to achieve. That doesn't stop when you have a terminal diagnosis. If anything, that all becomes much more important.

"When your world changes due to illness you don't always have the time and energy to push for change. That's why I support this research from Marie Curie and the What Works Centre for Wellbeing. It promotes simple changes that would make a huge impact, and employers can be pivotal in making that change happen."

The Work and terminal illness project partnered with YouGov to survey 1,000 UK Human Resources decision makers and found less than half had formal practices relating to employees diagnosed with terminal illness. Furthermore, 69% of organisations that did not already have a policy in place had no plans to implement one.

The researchers describe this wide variation in support as "an employer lottery" and recommend that Governments across the UK ensure that legislation safeguards terminally ill workers, and that employers develop an effective framework to support employees with a terminal diagnosis.

Izzie Baverstock-Poppy, Research Officer at Marie Curie, says:

"Hearing about Jonnie's experience makes us all think about how we'd react to a terminal diagnosis and how we'd want to plan ahead to look after the people we love. Work offers financial security but also an escape, a sense of self-worth, and having that taken away is an added gut-punch during what is already such a scary and emotional time."

Joanne Smithson, Head of Implementation and Learning at The What Works Centre for Wellbeing, says:

"As we live longer, and we see transformative changes in medical science and palliative care, we will see more people working with terminal illness. Our research suggests that improving this experience for employees will rely on many partners working together. For example, businesses, HR leads, occupational health and health care professionals urgently need to collaborate and integrate approaches to remove the burden from individuals faced with navigating complex social, legal and welfare support."

In addition to the survey, a scoping review identified four areas where there is a lack of evidence for employers, individuals and policy makers to support people working with a terminal illness: social, welfare and legal needs; financial needs; mental wellbeing needs, and factors affecting decisions to work.

To read the project summary from the What Works Centre for Wellbeing and Marie Curie please click here. And to speak with the research team to improve policies where you work, please contact izzie.BaverstockPoppy@mariecurie.org.uk