Tom Simpson from Stonehaven, Scotland, UK was diagnosed with stage IV lung cancer in August 2014. Tom died on 24 March 2018 aged 48. He was originally given 12 months to live.

Early in 2015, Tom responded to our advert asking for individuals with experience of lung cancer to help us develop our first-ever patient priorities project aiming to raise awareness of what matters most to people affected by people with lung cancer.

Although newly diagnosed, Tom was keen to put his energy into improving treatment for others as well as spending time with his family and continuing to work. Tom talked about how information needed to be trustworthy, evidence-based and of high-quality from his experience of looking for information on the internet.

Tom joined our lung cancer Patient Advisory Group (PAG) and was an active and enthusiastic member, attending all meetings and workshops held in Amsterdam and Brussels. This PAG was the driving force behind the patient priorities project as we developed an information website for patients and guidance for healthcare professionals on the top priorities needed to improve treatment, including how to improve communication with patients and carers.

We got to know Tom as the project progressed and especially valued his down-to-earth humour, optimism and the dedication he brought. He was always keen to provide feedback, input ideas and volunteer to help in any way he could. Tom was a passionate advocate for change and had a special skill in getting his message across in a way that made people listen and take notice.

Some of the contributions that Tom made through his work with us:

  • Helping to develop an international survey to gain insight into the experiences and priorities of people living with lung cancer and their family members/carers.
  • Helping to develop an information website for individuals and carers affected by lung cancer and for healthcare professionals to signpost their patients to.
  • Informing a new European statement on lung cancer management.
  • Presenting in a training session for healthcare professionals in Europe on how to communicate better with patients.
  • Wrote an article for the European Respiratory Society’s Red Magazine about his experiences, distributed to 20,000 delegates at the 2017 international conference.

Tom also went on to share his experiences at events and in campaigns organised by other organisations such as Lung Cancer Europe (LuCE), the Roy Castle Lung Cancer Foundation and the European Medicines Agency.

We express our gratitude and appreciation for how Tom gave of his time and energy to improve the lives of others which inspires us to continue to work for this in his memory.