Henfield resident, Greta Coleman, 83, joined other carers, patients and MPs from across the political parties in Parliament on Wednesday 25 February for the launch of the British Lung Foundation’s (BLF) idiopathic pulmonary fibrosis (IPF) patient experience report launch.
Greta met with her MP, the Rt Hon Nick Herbert, to discuss the realities of care for those living with this devastating lung disease, highlighted in this new report. The report draws from first hand experiences of patients and carers, like Greta, and makes it clear that there is a lack of consistency between the best practice standards and the realities of care for those living from IPF.
Last month the National Institute for Health and Care Excellence (NICE) published their quality standards on IPF, designed to improve care, after considering feedback from the BLF submitted on behalf of IPF patients and carers following an online survey.
Greta Coleman, who attended the launch on Wednesday, said: “IPF kills so many people every year in the UK – and the number has been rising for decades – yet still no one knows what causes it, and still there is no cure.
“I was happy that my MP came along to support those affected by IPF and I hope this launch will help us raise awareness about this terrible disease.”
Ruth Fleming, IPF Project Manager at the British Lung Foundation, said: “IPF is a devastating lung condition which severely impacts the lives of those affected, their families and carers. We need to take huge steps to improve awareness among both the public and policy makers in order to make real inroads in improving patients’ lives.
“The launch of this report is one of many ways the British Lung Foundation has been campaigning to highlight the needs of IPF patients and carers across the UK and help give IPF the prioritisation it deserves.”
Report and picture by Juliet Eales, the British Lung Foundation.