HAYES IN THE HOUSE: By John Hayes
When my ten-year-old son was a baby, my friend, who was to be his Godmother, died.
She had lived with chronic lung disease for almost all the years I knew her.
When in Donington at one my regular constituency surgeries, I met Ron Flewett, from Weston Hills.
The deeply moving account of the challenges he is facing so bravely reminded me of my friend Jane and inspired me to write this column.
Earlier this year Ron was diagnosed with Idiopathic Pulmonary Fibrosis (IPF), a rare condition which is similar to Jane’s.
Inflammation or scar tissue develops in the lungs, making them thick and hard so that oxygen can’t make its way into the bloodstream, shortage of breath being the most common symptom of IPF.
Because this degenerative condition has no known cause and no known cure, tragically, around half of IPF sufferers live for only two or three years after diagnosis.
Many though do survive and, with new treatments becoming available, we can hope that in future far fewer lives will be lost.
I commend particularly the work of the British Lung Foundation who are funding research into IPF and improving support for sufferers.
I have contacted – on Ron’s behalf – the Health Secretary, NHS England and the South.
Lincolnshire Clinical Commissioning Group is urging action on this dreadful condition which affects around 5,000 more people in the UK each year, older men being most susceptible.
Those who feel they are constantly breathless, have a cough that won’t go away and feel perpetually tired, are best advised to see their doctor.
Ron has decided, selflessly, to devote his time to raising awareness of IPF.
His determination to cope with his condition – understandably very difficult for his family too – and work to better the lives of others is extraordinarily moving.
I knew next to nothing about IPF before my close friend died; meeting Ron has renewed my determination to do all I can for him and others like him.
In the future, as a result of our efforts, we hope that more people will be aware of IPF; more help and support will be available for sufferers; and that understanding the causes of IPF will make a cure possible.
Meeting so many local people facing all kinds of difficulties, as I do, has a very strong emotional impact; and, as in the case of Ron, drives my determined work to help.