Lived experiences are at the forefront of shaping the ‘Fetal Exposures to Medicines Service (FEMS) pilot’ – We R Rare Steering Group Meeting – September 2024
Date and Time: Monday 16th September 2024 from 6.00 – 8.00pm
Location: Online over Zoom
What is the ‘Fetal Exposure to Medicines Service pilot’?
The Fetal Exposure to Medicines Service (FEMS) provides expert assessment, advice and care plans for people who are thought to have been affected by exposure to these medicines in the womb. The service is running a pilot until March 2026, funded by NHS England and provided by teams at Manchester University NHS Foundation Trust and Newcastle Upon Tyne Hospitals NHS Foundation Trust. You can read more about the service here.
How were the We R Rare Steering Group involved?
Providing accessible information on the FEM service to the patients and families it is working to support is vital. The We R Rare Steering Group have helped shape the FEMS booklet by sharing their thoughts, ideas and insights on:
- How the booklet would be used in practice e.g., one-off reading vs. something patients would keep coming back to
- The information it should include e.g., what questions should be included as part of the FAQs
- The language used – including how to make it more inclusive
- Ways in which to make the booklet more accessible e.g., by adding visual aids
- What can be done to ensure the booklet and its information provides reassurance to the patients and families reading it.
Hannah and Rachel, two of our We R Rare members involved in the discussions, told us that they believe the insights shared through the We R Rare Steering Group meeting will “have a positive impact” and that they’ve been able to provide “a new insight from the people who experience this often”.
How have the We R Rare Steering Group made a difference to this work?:
It’s vital that we continuously demonstrate the outcomes and next steps of the discussions we have but also, showcase how the We R Rare Steering Group are making a difference.
Eva Clarke who is the communications, patient advocacy and engagement lead for the FEMS pilot shares:
“Engaging and listening to people living with a rare condition is instrumental to ensure that the new pilot service, and its literature, reflects the needs and the voices of those who the service has been created for.”
More details:
We R Rare Steering Group is managed and supported by Vocal to shape the work of the Manchester Rare Conditions Centre and the NIHR Manchester Biomedical Research Centre.
For more information, contact Sinduja Manohar at sinduja.manohar@mft.nhs.uk and she’d be happy to help!