A patient’s journey and insights into pulmonary fibrosis research

In Spring 2023, we interviewed Michael Scott, a patient advocate, about his journey with pulmonary fibrosis and his views on research. Diagnosed in 2017, Michael served as the High Sheriff of Lincolnshire from 2020-21. His family has owned a crop and daffodil farm in Lincolnshire’s flatlands since the mid-1800s.

Below are the questions and responses from our insightful interview with Michael.

  1. Can you tell us a bit about how you felt when you first received your diagnosis?

I was fishing in Scotland in the summer of 2017 and I noticed a certain breathlessness when walking alongside the river and particularly going uphill. I visited the local GP’s surgery in Aberlour where the GP gave me a thorough examination, including an electrocardiogram; we discussed possible diagnoses, including the unlikely prognosis of pulmonary fibrosis which the GP assured me was unlikely since he had only had two cases in his practice during his career as a GP. I informed him my father suffered from the condition and that I was fully aware of the consequences should the condition be confirmed.

  1. How does your diagnosis affect your everyday life?

I think I am very fortunate in that I am still able to play tennis once a week and I try and have two rounds of golf a week. I do get breathless, but I know that, if I continue to exercise and keep a close eye on my weight, I can live with the degree of breathlessness that I experience.

  1. What was your experience of taking part in the FDG-PET study?

I wanted to help in any way I could when Professor Porter outlined some of the research work being undertaken by UCLH. It was very easy to participate in the FDG-PET study which was very efficiently organised. There was no pain involved which is usually quite an important consideration for the male of the species. There appeared to be an appreciation from all the staff involved that I was willing to take part in the research, which made it a pleasure to be involved in.

  1. How does the research work being done by UCL Respiratory and UCLH improve your life?

The FDG-PET research has obviously enabled clinicians to establish the severity of patients’ conditions based on the TBR (uptake scores) which have come out of the research statistics. I am very fortunate – relatively speaking – to have a TBR of 2.8 which puts me in a good prognostic group by being below the score of 4.6 which has been shown to present less severe outcomes at the time of the test. The management of my condition has been influenced by this useful test amongst other factors.

  1. Do you have a personal message for anyone thinking of donating to Breathing Matters?

A visit to the Breathing Matters website shows very clearly the significant benefit that can be derived from the Charity donating ‘seed corn’ sums of money to specific research projects relating to pulmonary fibrosis which then unlocks funds from many other sources to produce the total funding requirement for any project. Research does not come cheap and any donations, of whatever amount, make a meaningful contribution to the ultimate objective of finding a cure for this debilitating condition.


Sadly, Michael passed away earlier this year. However, his family wished for us to share his story to highlight his inspiring optimism and dedication to pulmonary fibrosis research.

The family are raising funds in Michael’s memory for Breathing Matters’ research work into pulmonary fibrosis. If you’d like to contribute, please visit Michael’s Memory Page.

[Posted April 2024]

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