Foreword: Patient Representative

Clare was diagnosed with familial pulmonary fibrosis in 2017 aged 37.  

I joined the Taskforce as a patient representative in early 2022 and to begin with I wasn’t exactly sure how my voice and those of others affected by lung health problems would be heard in the meetings. I needn’t have worried as the team have been really great at providing support and making it clear our experiences matter and that’s given me the confidence to share my insights. It feels good to be acknowledged and it’s clear Taskforce values my contribution, as well as that of other patient and carer representatives. Also, I’m encouraged that they are trying to get NHS organisations to have systems in place to gather patient experiences and design services in response to their needs.  

I’m really pleased that in 2022 Taskforce developed a position paper outlining where NHS England could go further to improve access to pulmonary rehabilitation (PR) services than the current commitment outlined in the NHS Long Term Plan. I hope NHS England will reflect on this advice in their new five-year vision for PR. I know first-hand what a difference PR can make, as I took part in a 12-week course in 2019 , which taught me which exercises I could safely do to most benefit my health, as well as providing other support. Since then, I continue to take part in regular maintenance classes, and I even managed to complete a 5k park run. I particularly hope the NHS vision will expand the eligibility of PR to people at an earlier stage of their condition. 

A vital barrier to more PR is not having enough physiotherapists and other trained healthcare professionals. That’s why I joined Taskforce’s new Workforce Working Group, because to make true progress in delivering more and better care to patients we have to push government to urgently take long term action to address workforce shortages. It’s vital we get more investment for training future healthcare professionals in respiratory medicine so they are better able to meet the complex needs of people living with lung conditions, support faster and more diagnoses, and deliver higher quality care throughout the patient journey.   

In 2022 we have also seen NHS England develop the breathlessness pathway to support earlier diagnosis. This would seem to be a really useful tool, particularly for primary care physicians as breathlessness is such as a general symptom. As a consequence, Taskforce has plenty of evidence about when issues are missed, mis-diagnosed or where people are sent away to see how things develop. In my case I had a history of asthma, so I knew about feeling abnormally out of breath, and my mum had died of pulmonary fibrosis aged 46. Fortunately, although my GP didn’t know much about pulmonary fibrosis when I started to struggle to do everyday tasks like cleaning or climbing the stairs, he did refer me on to see a specialist. But, for many people they end up going around the houses to get a diagnosis, so this pathway will hopefully provide a structure. Next year I want to see evidence of how it is being used and changing practice.  

Under the medicines optimisation work done by Taskforce two developments have happened that are of real interest to me. Firstly, I am thrilled that the campaigning work of Action for Pulmonary Fibrosis, Taskforce and others has paid off and NICE have announced their approval for extending access to Nintedanib, for those in the earlier stage of disease progression from pulmonary fibrosis. This is a really positive outcome as England was one of few countries that still had a largely arbitrary cut off that sets who can and can’t get the drugs.  It would be great to see it also happen for Pirfenidone as well. 

Secondly, I think Taskforce are doing important work on highlighting the need for more regular medicines reviews for people prescribed inhalers, whether that is to help manage COPD or asthma. Making sure patients have the correct technique is essential, as well as checking whether they are on the right medication. Having been an asthmatic I remember I was prescribed three inhalers: two for daily use and one reliever if my condition was exacerbated, but then I spoke to a pharmacist and was recommended a combined daily inhaler. This was more manageable as it reduced the number of times I needed to take the daily inhaler and the cost of my prescriptions. That’s why it’s also really important that Taskforce are raising awareness of the invaluable role community pharmacists have and how this should be better supported.  

There are still a lot of changes that need to happen to improve the treatment and care of people with lung conditions, but progress is being made, and I’m looking forward to being a part of pushing for more in 2023.