Tooting resident John Conway visited Parliament to call for better care for people living with Idiopathic Pulmonary Fibrosis (IPF), a rare and serious lung condition.

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.

The condition leaves people struggling to breathe. Some need to carry oxygen with them and many came long distances, travelling from all across the country.

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.

At the meeting, 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.

John Conway, who is living with IPF, said, “there are significant inconsistencies in care across the country and we urgently need to address this. Today was a key step forward in raising awareness.”

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.”