The challenge of IPF treatment
Dr Ben Hope-Gill explains the challenges facing people who need treatment for IPF.
We all hope to get good quality care and treatment when we go to see our doctor. But for people living with the lung condition IPF, it’s often hard to get diagnosed and treated.
IPF, or idiopathic pulmonary fibrosis, is a condition that causes scar tissue to form in the lungs, making them thick and hard. Over time, the lungs get stiffer and it becomes hard to breathe.
People with IPF find themselves out of breath just doing simple everyday things like walking or hanging up laundry. Often they tell me that they can’t do the hobbies or activities they used to, or can’t see their family as much as they once did. Every breath takes so much of their energy.
Sadly, we still don’t have a cure for IPF. Most people will live no more than 3 years after finding out they have the condition. It’s so vital that care is delivered as quickly as possible to people affected. They deserve the best quality of life they can have in that time.
IPF is a type of interstitial lung disease, or ILD. Across the UK, there are special guidelines for diagnosing and treating people who have ILDs like IPF. When someone is suspected to have IPF, a special team of health care professionals, called a multi-disciplinary team, decide on a diagnosis and what treatment is best for that person.
With their specialist knowledge, the team can arrange tests and look into the condition of the person to decide if there are drugs that are suitable and safe for them. Or they could suggest a more appropriate course of treatment. But what do you do when there aren’t enough specialists?
This is the problem facing people living with IPF in Wales right now.
Waiting for help
Without enough specialist teams, people who have or are suspected to have IPF have to wait longer for a diagnosis and treatment.
This is difficult enough when you’re living with such debilitating and painful symptoms; but imagine facing this reality when you know how little time you have left with your loved ones.
Let's work for change
5 – 12 October 2015 is IPF Week, when people and organisations around the world are raising awareness of IPF. The British Lung Foundation is campaigning to increase the number of specialist teams in Wales to meet the needs of those who have or might have IPF.
This week, they launched their latest report, Shining a light on IPF: the patient experience in Wales, at the National Assembly for Wales. But they couldn't do this work without your support. If you believe that people with IPF should be diagnosed and treated promptly, consider making a donation to the BLF.
Your donation could help them and their families enjoy a better quality of life for longer.
Find out more about IPF Week and how you can help change lives.