Faith Holloway heads up the Compassionate Employers programme at Hospice UK, helping organisations look after their people and support employees through grief, dying and caring

We spend so much of our lives at work, we shouldn’t have to hide our experiences of death and dying from our colleagues, our peers or our bosses. But it can be tough to find the right language to talk about death, dying or grief—especially at work.

Research by Hospice UK’s Compassionate Employers programme found that almost a quarter of employees (23%) say they would not feel comfortable talking to their line manager about a bereavement they have experienced. Similarly, only 17% of managers would feel very confident supporting someone who reports to them if they had experienced a bereavement. The result of this discomfort means people may be left to cope alone when they’re caring for someone, experiencing anticipatory grief, or following a bereavement.

If you care for a child with a rare disease or life-limiting condition, there will inevitably be times when this might affect your work. You might need time off for an appointment, flexible working arrangements to respond quickly to care needs, or just an understanding employer who can support you to take a break when needed.

Research by Carers UK found that 75% of employees worry about continuing to juggle work and care. But having an employer with the tools and resources to support you means you have one less thing to worry about.

Starting the conversation

First of all, your personal life, your health and your home life are confidential to you. You do not have to share any information you don’t want to.

But if you need support, your employer can help. And often it starts with just having a conversation. You can expect your colleagues and line manager to want to be as supportive as they can when you are faced with these challenges. If you feel able to share what is going on, they will do whatever they can to make things easier.

For many families caring for a child with a rare disease, the immediate days or weeks after diagnosis can be full of uncertainty as they grapple with what the future might hold. With everything else going on, and all the new information you have to take on, talking to your employer might not be at the forefront of your mind.

But this can be a good time to tell your employer what’s happening. You don’t need to have all the answers or all the information before you have a conversation with your employer. It’s OK not to know what will happen with your child in a week’s, month’s or years’ time; by inviting your employer into the conversation early they can help support you throughout your journey.

What support is available?

Many workplaces have Employee Assistance Programmes available to support staff well-being, offering vital support and providing in-the-moment guidance for individuals.

Through their Compassionate Employers programme, Hospice UK helps organisations look after their people and support employees through grief, dying and caring.

As experts in end-of-life care, Hospice UK understands the journey from a diagnosis to bereavement. The Compassionate Employers programme includes support not just for bereaved employees, but for those with caring responsibilities and any employee affected by a life-changing diagnosis such as a life-limiting or terminal illness.

Through training and the right resources, employers can support their employees with a more hands-on approach. The programme provides employers with the tools to create a more understanding culture in the workplace that allows room for people’s challenges, and the readily available skills to support employees and managers.

What makes a Compassionate Employer?

Organisations can do a lot to ensure employees feel comfortable to talk about what’s going on in their lives, whether that’s caring for a child with a rare disease or coping with a bereavement.

Employers who do this well make sure to use inclusive, direct language, avoiding euphemisms and including trigger warnings where needed. They repeatedly signpost to and invest in support resources for their staff, including equipping line managers with the confidence to have compassionate conversations, so that talking about caring or grief isn’t a taboo.

They champion staff who share their own stories of grief or caring responsibilities internally, so people can learn from others’ experience. By normalising workplace discussion of death and dying, employers can make it easier for people who are grieving or have caring responsibilities to talk about this at work, making sure they get the support they need.

Could your employer be a Compassionate Employer?

Compassionate Employers provide employees and their colleagues with the support they need at any stage of their journey. It can help everyone—employees, managers, and HR teams—to feel confident and empowered to support their staff if they experience grief or bereavement, or are impacted by a terminal illness diagnosis.

We want every workplace to be a compassionate one, but we can’t make change alone. To find out how you can make change in your workplace visitwww.hospiceuk.org/compassionate-employers.

Copyright notice: Hospice UK owns the copyright of the images in this article.

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