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People with IPF deserve speedy and seamless access to care

There’s been a lot of progress in recent years yet there is still no known cause or cure for idiopathic pulmonary fibrosis (IPF).

group of ILD IPF patients

IPF is a condition that causes progressive scarring of the lungs. Treatments don’t work for everyone and many people experience delayed and inaccurate diagnosis.

A map for better care

We’ve been talking to people with IPF, carers, policy makers, charities and health care professionals to see what they think. These insights helped us write our new report, called A map for better care.

A postcode lottery

We found that access to diagnosis, services, treatment and support for patients with IPF is fragmented and varies across the UK.

Many people told us that even doctors and nurses don’t understand their condition, that they didn’t receive any clear information about the disease, that their diagnosis was delayed, and that treatments are out of reach.

People with IPF shouldn’t have to waste the precious time they have left going from service to service for help. They need speedy, seamless access to the care they need when they need it.

Clear and localised care journeys for people with IPF 

IPF is a deadly and devastating lung condition. Most care is given by specialist centres, but in reality, people with IPF need access to a complex range of health and social care services – including oxygen therapy, pulmonary rehab and palliative care.  

We want professionals, charities, people with IPF, commissioners and health planners to come together in local areas and establish local networks. These networks should design and publish pathways for IPF patients that bring together all these services.

We want a taskforce for lung health 

On a national level, the government needs to prioritise respiratory services. This should include far more research into this deadly condition, into treatments and into its causes.

We want them to form a taskforce for lung health, like the one that has been formed for cancer and mental health, to write a plan to tackle all lung conditions.

Help us fight for change and write to your MP today.

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18 September 2017