A patient’s perspective on 2021
Peter was diagnosed with idiopathic pulmonary fibrosis in 2013. He is working with the Taskforce for Lung Health to help put pulmonary fibrosis on the map.
One of my main hopes when I became involved with the Taskforce for Lung Health was to raise awareness of pulmonary fibrosis. I want more people, including healthcare professionals, to have heard of it as a disease and understand its impact. Around 70,000 people in the UK are living with a type of pulmonary fibrosis called idiopathic pulmonary fibrosis (IPF) and it causes 5,500 deaths each year in the UK. There’s currently no cure and the prognosis is very poor, with people living just three to five years from diagnosis.
That’s why it’s important the Taskforce is working hard to ensure our discussions and activities are relevant for a broader range of different lung conditions than are prioritised in NHS England’s Long Term Plan; looking beyond COPD and asthma. I’ve been encouraged by the progress that has been made this year, but there’s more to be done to push policy makers and healthcare services to have a greater understanding, and provide a fairer allocation of investment for patients with pulmonary fibrosis, as well as other rarer conditions.
It’s been such a difficult couple of years, and the whole healthcare system is under immense pressure. Since September 2019, I have only been seen by a respiratory specialist once when I had to have emergency treatment for pneumonia last autumn, whereas before the pandemic I was seen every four months. I haven’t had any review of my medication either. Imagine the psychological impact of not knowing if, or how, your condition is changing when you are living with a disease that usually only has a five-year prognosis. Far too many lung health patients have had to manage their condition alone throughout the pandemic, in a way that I am sure isn’t the case for people with cardiac issues or cancer.
I’m also frustrated and concerned about ongoing problems with access to pulmonary rehabilitation. Evidence shows it is an effective way for people to manage their lung condition, including pulmonary fibrosis, but it is still not readily available for enough people. In my case I was offered a PR course six years ago, but since then I have been given no further opportunities to take part, and I know many others who have had no access to PR. That really worries me and in 2022 we have to see many more people with lung disease being supported to complete PR classes.
If I try and think more positively, there have been encouraging developments this year. It’s good news that NHS England are developing a better way for diagnosing breathlessness, which when rolled out, should lead to real improvements for the speed and accuracy of diagnosis. I am also very supportive of the work that the Taskforce are doing to build the role of community pharmacists in helping patients to manage their condition and medication better. They are highly trained professionals who people can more readily get to see than a GP. Also, at last, it looks as though some patients, who have until now missed out, will be able to get anti-fibrotic drugs.
I want to see the spirit that drove our healthcare system to innovate during COVID-19 now push to do things differently and better for lung health patients. For respiratory patients in general, and people with pulmonary fibrosis in particular, we want to see those in power also have an urgency and determination to give us the tools to improve our lives. This progress needs to include a greater understanding of the mental health burden of living with a lung condition and more provision of emotional support; and doing more for people at the end of their lives.
This is about real people, living real lives. We’re much more than just numbers on a page and we deserve to be treated that way. It’s just as well we have had the Taskforce working hard during this time making the case for respiratory diseases, as without them I would imagine lung patients would have lost out even more.