There is a lack of consistency between the best practice standards and the realities of care for those suffering from idiopathic pulmonary fibrosis (IPF), Alex Cunningham has said, and more needs to be done to recognise the condition and get a quick and accurate diagnosis.
Chairing a recent round table discussion alongside the British Lung Foundation, Labour’s Stockton North MP met patients and carers from across the country to discuss their experiences of living with the rare lung disease and heard about the difficulties of living with IPF, their worries with the speed and precision of diagnosis, and the lack of available treatment options for patients.
Also raised during the meeting were concerns at the current lack of investment in research and support, as well as the uneven distribution of interstitial lung disease specialist centres across the country. Many of those present were speaking about the condition publicly for the first time, and Alex pledged to do whatever he can to raise awareness of IPF among parliamentary colleagues and healthcare professionals.
Around 15,000 people in the UK are diagnosed with IPF, which causes scarring of the lungs and hinders a person’s ability to breathe. No cure has yet been found and it is estimated that around 5,000 Britons will die of the disease this year.
Alex said:
“I am very grateful to the delegation for travelling from all parts of the country to talk with me about this long-neglected lung disease. Idiopathic pulmonary fibrosis is a devastating condition – it is difficult to diagnose and has a rapidly debilitating effect on patients, who experience a decline in lung function and a severely reduced quality of life.
“It is clear that far more must be done to increase public awareness and referral rates to lung specialists, and there is a pressing need for further research into what causes IPF and how we can better treat it.
“I have called on the Government to take action on IPF so that patients and their families get the care and support that they deserve, and have asked that NHS England take steps to ensure geographical equity in service and treatment quality.”
