Introduction
We’ve all heard language throughout our rare experience that has shaped our perspective, either in a negative or positive way. This year, SOFT UK are launching a campaign to draw a focus on the impact of language, during and beyond diagnosis, and aim to highlight how important it is.
Throughout the year, we will be changing the narrative around phrases, language delivery, and assumptions, with the aim of helping to make a positive change for families in the future.
If you would like to share, then please get in contact with us at contact@soft.org.uk with a video, audio clip, or written quote to help us build a library of voices and experiences. Ideally we want to hear the phrase, expression, or experience that impacted you, and how it could be changed to make it a more inclusive and positive experience.
Whether you’re a family, a health care professional, or partner from another support organization, we’d love for you to get involved.
You just need to share your phrase, expression, or experience that impacted you, and how you’d like to see this change for anyone else in the future.
Remember, it’s not just language we are looking to change the narrative around, but experiences as well. An example of this is hospices and how they can often be perceived as a sad place to go for end of life care. However, families tell us time and time again what a positive experience it is to visit hospices, and we will soon be filming a short video to highlight this and change the narrative.
To send your experiences, or discuss your ideas in more detail email: contact@soft.org.uk
How Can You Get Involved?
Weird and Wonderful
In this video, Dr Lucy McKay, CEO, Medics for Rare Disease is sharing her phrase, ‘Weird and Wonderful’.
In this video, Sharon Darke, Footprints Baby Loss, is sharing her experience, "Say their name".
Say Their Name
Definitive Prognosis With No Hope
In this video, Beth, mum to Hope and author of Carrying Hope, is sharing her experience.
In this video, Shaun Dowdall, Charity Director SOFT UK, will be sharing his phrase, 'Incompatible With Life'.