Ron Flewett joined other patients, carers and MPs in parliament for the launch of the British Lung Foundation’s IPF (idiopathic pulmonary fibrosis) patient experience report.
This new report draws from first-hand experiences of people like Spalding man Ron (54) and highlights the lack of consistency between the best practice standards and the realities of care.
Ron, who was diagnosed with the progressive and incurable lung condition in 2014, has been active in south Lincolnshire, Westminster and the EU parliament, with the aim of raising awareness and improving localised services for this little-known yet devastating disease.
Most recently, Ron met with his local MP, John Hayes, to talk about IPF service provision in the local area. Mr Hayes was inspired to take on Ron’s case and help him raise awareness of this devastating disease and was also present at the report launch on Wednesday.
Ron said: “So little is known about this nasty disease and I’m determined to change that.”