Idiopathic Pulmonary Fibrosis is a chronic condition which results in scarring of the lung tissue reducing the gaseous exchange ability of the lung and thus as the disease progresses quality of life decreases.

Currently there is no known cause of Pulmonary fibrosis however it is accepted that idiopathic Pulmonary fibrosis is the most severe form of pulmonary fibrosis, with a life expectancy median of between two to five years after diagnosis

There are two drugs that MAY- JUST MAY, slow it but these are not without side effects and these for many patients are so severe they simply stop. The only hope for these patients is a lung transplant.

Current guidelines are you "need to be sick enough to need it, well enough to survive it". I think we can do better than that. It is accepted not everyone will be eligible for transplant and not everyone with IPF wants one, but none-the-less, I urge the Government and National Health Service to review this guideline so as patients with IPF can be referred upon diagnosis given life expectancy is so short and the rate of progression variable.

CASE STUDY

My aunt was diagnosed at 56- she was dead by 58. 2 years and 2 months after diagnosis. She died, not waiting for transplant but whilst being assessed for it. There is no excuse for leaving it so late in any patient.

I urge you to please give me you signature as I lobby for this important change so as we can reduce the number of people with IPF being left too long prior to being considered.

Many thanks,

R. MacDonald,

Cert Man Care (Open), Cert PPH (Open), BSc (Hons), PGCert (GCU, UWS & Gla), LLB (Hons)