#40 Working when living with a terminal illness with Joanne Smithson and Sam Royston
28.11.2022
#40 Working when living with a terminal illness with Joanne Smithson and Sam Royston
In this episode it is my pleasure to talk with Joanne Smithson from What Works Wellbeing and Sam Royston from Marie Curie about working when living with a terminal illness. We reflect on the legacy of Clair Fisher and how Clair spoke so passionately about the impact on working on wellbeing. We talk about the research that has grown from this legacy and what the next steps look like.
This is a great episode which challenges many assumptions of working while living with a terminal diagnosis.
Key messages from guest
The inspiration for researching working when living with a terminal diagnosis was from a What Works Associate Clair Fisher who realised how little was known about this subject. Clair had terminal bowel cancer and the research is very much her legacy.
There is no current guidance on working when living with a terminal illness
Minimum standards and best practice are suggested outcomes from the research
Legislation is called for to support terminally ill people to remain at work if that is something they wish
A private members bill has been commenced by Alex Cunningham MP to ensure we are protecting people living with terminal illness in employment.
Legislative change, action from employers and work across local and regional systems is needed to work collectively to support those living with a terminal illness who wish to be in employment.
Resources
Listen to the first podcast and inspiration behind the research: How to ensure your plans are heard with Clair Fisher
Read more about the Dying Well: Wellbeing at the end of life project
Access the research report and findings Working with terminal illness: scoping review and HR survey findings
Find out more about the Terminal Illness (Support and Rights) Bill Private Members' Bill (Ballot Bill)
Listen to Conversation Analysis with Professor Ruth Parry and how we can use in Advance Care Planning mentioned by Joanne
Listen to Advance Care Planning and dementia with Wendy Mitchell mentioned in the podcast.
Access the What Works Wellbeing website
Access the Marie Curie website
Find out more about the TUC The Dying to Work Campaign “Many workers get a serious illness at some time in their working lives. They may require time off, often many months, to get treatment or recover. There is good guidance that has been produced by the TUC and others to deal with cases of long-term illness, or return to work for those who are disabled as a result of an illness or injury.”
Bio
JoanneSmithson
Joanne is the Head of Implementation and Learning at the What Works Centre for Wellbeing. The Centre is the UK's national body for wellbeing evidence, policy and practice. Joanne leads the Centre's work with local government and the health sector. For the last couple of years, she's been working on a project exploring wellbeing at the end of life.
Sam Royston
Sam Royston is Director of Policy and Research of Marie Curie, the UK’s end of life charity. He was previously Policy Director at The Children's Society, and is also a former chair of the End Child Poverty coalition. He is also author of the book "Broken Benefits: What's gone wrong with welfare reform".
Find out more about my Bespoke Consultancy
If you’d like to find out more about my work contact me.
What one thing will you do?
It would be great to share what resonated with you from this episode, what is the one thing you will do differently? Head to Twitter, Facebook or LinkedIn to continue these important conversations.
Thanks to all my guests for working with me to share their knowledge, experience and stories about Advance Care Planning. I hope you enjoyed listening and have insights to take away; I love hearing your reflections on the series and look forward to reviews on Spotify where you can also subscribe to the series.
Clare
Important Conversations about Important Conversations.