Sharing your experiences of IPF
Lyndsey shares what happened at the launch of our IPF patient experience report.
Here in Wales, we've been working to find out more about the experiences of people living with idiopathic pulmonary fibrosis, or IPF.
We wanted to hear honest views and opinions, so we invited a group of people with the condition along to a series of workshops to tell us more.
The workshops went really well. We were able to bring all of the feedback together into one report, Shining a light on IPF: the patient experience.
The report is an eye opener. If you have IPF, you might find it more or less difficult to get diagnosed depending where you live in Wales. This should not be happening – everyone with IPF deserves the same high quality care. As a result, we have asked Welsh Government to commit to 3 things:
- more funding into IPF research
- accessible information about IPF at the point of diagnosis for patients
- access to a named specialist nurse for those living with IPF
Launching the report
On 6 October we held an event at the National Assembly for Wales to launch our report. It was fully booked and we even had a waiting list! 15% of ministers, along with health care professionals, members of our Breathe Easy support groups and people living with IPF all came to show they care.
Throughout the event we heard from politicians including Lindsay Whittle AM Plaid Cymru (our event sponsor) and Vaughan Gething AM, Deputy Minister for Health. Both supported our asks to the Welsh Government.
Dr Kim Harrison from Swansea University explained more about IPF and stressed the need for more research. How can we be in an era where we still don’t know what causes a disease?
Our own Joseph Carter, who leads the BLF team in Wales, discussed the findings of our report, and called on the Welsh Government for support.
“Patients with IPF can’t afford to waste time and energy going from service to service for the help they need.
"This is why we are calling on Welsh Government to provide funding this year, and subsequent years to develop a tertiary service for IPF, to work with health boards to ensure that information about IPF is accessible to patients at the point of diagnosis, and to work with health boards to ensure that patients with IPF have access to a named specialist nurse once diagnosed.”
The star of the show was Maurice from Swansea who bravely shared his story of living with IPF. He told us about his path to diagnosis and how IPF has changed his life forever.
I found listening to someone share their story about living with IPF very powerful. Maurice’s words really inspired me to want to do more. I'm sure that many of those who attended that day will have been inspired too, and I hope that the landscape of IPF care will soon change for the better.
Our patient experience report looks at the experience of IPF care in Wales. Read the IPF report online.