Action for Pulmonary Fibrosis > News > Campaigning > Action for Pulmonary Fibrosis attends Westminster alongside patient groups led by MP Maggie Throup

Action for Pulmonary Fibrosis attends Westminster alongside patient groups led by MP Maggie Throup

From APF: far right: Senior Operations Manager Roxane Caplan, trustee Howard Almond and Chair Steve Jones.

Action for Pulmonary Fibrosis were delighted to be at a Parliamentary event at Westminster last week alongside other patients groups.

The event, organised by Roche Products Limited, brought together those living with IPF and politicians from all parties to raise awareness of the disease. Maggie Throup MP, whose mother passed away from the illness, hosted a meeting to hear their stories and discuss what action could be taken to improve care and diagnosis.

At the meeting with Maggie Throup MP, participants raised the issue of a gap in early stage treatment and care. In a recent British Lung Foundation report, one person described the current situation as the equivalent to telling a cancer patient they cannot have treatment until their tumour increases in size.

Currently around 15,000 people in the UK live with IPF. Earlier diagnosis, support, treatment and information, alongside learning how to manage the condition can help with symptoms and slow down the progression of the disease. Average life expectancy from time of diagnosis is around three years.

Action for Pulmonary Fibrosis Chair Steve Jones supporting the IPF debate at Westminster

Steve Jones, who has IPF and is Chair for Action for Pulmonary Fibrosis said:

“Having an MP like Maggie Throup leading the session and really caring about IPF sufferers was something truly remarkable. I was diagnosed with IPF in 2008 and I know first-hand that people with IPF are sometimes not recognised and feel invisible. For a long time, IPF has been neglected in relation to other diseases that affect similar numbers of people.”

Clare Beckett, 38, from Cambridge said: “Today’s event has been very emotional and informative. These type of initiatives are great platforms for people with IPF to come together and support each other. The toughest decision in my life has been having to tell my family about my condition as we have a family history of pulmonary fibrosis, my mum died from it; but I am very lucky to be surrounded by family and friends that have offered me unconditional support.”

Maggie Throup MP said: “I’m delighted to be championing people with IPF. I know from firsthand experience with my mother’s illness how life-changing a diagnosis of IPF can be, and I have been inspired by those who have attended today to share their experiences.”

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