An IPF support group for my mum

Jackie talks about setting up an IPF support group.

I first noticed that my mum Pat was getting breathless when we were in holiday in Spain. She was breathing more heavily than normal when we walked up the hill from the restaurant. I knew right away that it wasn’t right, and that it just wasn’t like her to struggle like that.

To be told she had idiopathic pulmonary fibrosis (IPF) was a real shock. My uncle had died seven years earlier with something similar, and I’d assumed that it wouldn’t happen again. I can’t imagine how my mum felt – to be told there was no cure, no treatment and be left to deal with it.

I wanted to help and do whatever I could. I went to an event about IPF and spoke to someone who had set up a support group. We didn’t have anything like that where we live in Derby - so I thought it would be a good idea to start one. Martin, my husband, is very good at organising things, and he got the ball rolling.

My mum’s nurse, Mandy, also wanted to help, as well as a few other people with IPF that she knew. We also contacted the British Lung Foundation who explained to us how support groups work, and what we needed to think about.

They've been very supportive and their advice was invaluable in getting up and running quickly. Their IPF project manager, Ruth, also told us about IPF Week, which raises awareness of the condition, so we targeted this week for our first area meeting.

To start with we held a small meeting so that we could get ideas about what we wanted from our support group. One of our main concerns was how we let people know about the group. We have asked our local hospital’s respiratory department to send out flyers. We also put information up around Derby in GP surgeries and community centres.

I wasn’t sure how it was going to work out but it was a start. We held our first meeting yesterday and it was a big success. Ruth came along to talk about how the BLF can support us, and the BBC sent a reporter too. 

There was also lots of time for a cup of coffee and a chat - and we blew lots of bubbles, which is the theme of World IPF Week this year. I’m looking forward to the next meeting and so is my mum.

Do you feel you need extra support? Find out where there is a support group near youYou can support our IPF campaign by making a donation online.

Sadly, Pat has passed away since this story was published. Our thoughts are with Jackie and her family.


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3 October 2014