Date published: 04 February 2025 by Sophie Wichman
Rainbow Trust Children’s Charity is pleased that the voices of parents we support were heard in Parliament yesterday, 3 February. We thank Robbie Moore MP for meeting us to hear about the issues families face balancing care and work, as part of his preparation for opening the debate, and for highlighting our work during the debate.
We hear from too many parents that they face an impossible choice between earning a living and caring for their child with a life-threatening or terminal illness. No parent should have to make this choice.
During the debate, Robbie Moore MP said:
“We should also be encouraging businesses to think outside the box, as highlighted to me by Rainbow Trust … when I was preparing for this debate. They told me that flexible working is vital; for the parent of a sick child with complex needs, it is so important that flexible working, or part-time work, can be put in place.”
We continue to call on policymakers and employers to better support parents of children with a life-threatening or terminal illness. We think three things need to happen:
1. Employers receive better guidance
We fully endorse flexible working offers, however we believe that employers need to go further than offers of compressed or part-time hours, options such as random working policies or annualised hours can help. Employers need more clarity on how to support staff with a child who has a life-threatening or terminal illness as many employers do not understand the unpredictable demands placed on parents, which leads to unnecessary isolation in the workplace, as well as talented people leaving the workforce.
2. Remove barriers to employment
The wider health system also has a role and could adapt to support parents who want to remain in work. The NHS should recognise that parents are not just carers, but also employees, and make an offer of support. Small changes - such as ensuring hospital Wi-Fi access - would allow parents with remote-working jobs to continue working when possible.
3. Recognise the role of charities in supporting families
Many parents rely on charities like Rainbow Trust, whose Family Support Workers are often the only people families trust to care for their child while they work. However, these services are underfunded and overstretched. Greater recognition of the role of social palliative care charities is needed within health and employment.