‘Becoming involved has given a new meaning to my life; it’s the best thing I’ve ever done’ – Terry’s story

In our ambitious Grand Challenge, research teams from around the world are competing for £20 million funding to tackle one of our seven big research questions.

Through local consultations, workshops, and as part of our Grand Challenge Patient Advisory Panel, patients played a vital role in helping set those challenges. Here, Panel member and cancer survivor Terry shares his experience of lung cancer, and what it’s like to be involved in our work.

Tell us about how you became involved in our work

In 1989, I was a 42-year-old self-employed joiner with lots of work coming in, and I was planning for the future, hoping to expand my business. But one week before my 43rd birthday, life took an unexpected turn.

After coughing up blood, I was admitted to A&E and had numerous tests which discovered I had lung cancer. I remember waking up in my hospital bed after surgery with an oxygen mask on and in extreme pain. I had a drip attached to me alongside two drainage tubes which were plumbed into my body. My prognosis was not good.

At that point I didn’t think I’d survive my illness – my chances were slim. But more than 20 years later, not only am I alive and well, but I’ve been married to my wife Anne for 49 years, and we have three children, and four grandchildren.

I’m now part of Cancer Research UK’s Involvement Network, and take part in surveys, focus groups, panels and workshops working with CRUK staff, researchers, clinicians, and other patient representatives, helping to shape the future of cancer research!

And in March 2015, I was one of 20 patients and carers affected by cancer who were invited to take part in one of Cancer Research UK’s ‘Big Think’ workshops. Together patients and carers worked with researchers andclinicians from all over the world. We helped to thrash out ideas to try and pinpoint what the research questions should be for the new Grand Challenge research funding award.

What role did people affected by cancer play, and who took part?

Patients and carers were there to give the perspective of those affected by cancer, and to help shape research so it gives the greatest benefit to patients. For example, we shared our experiences of going through treatment, and helped to highlight research questions that are really important to people affected by the disease.

Unlike the researchers I don’t have an academic background. But while I may not know the science, I do know cancer! One of 10children, I was first touched by the disease many years ago when it took my father. Since my own diagnosis one of my sisters has succumbed to the disease and now, as I write, two of my brothers and another sister are undergoing treatment.

Patients at the workshop came from all walks of life and professions, and had travelled to Edinburgh from all over the UK. Many of them were still having treatment, and some had lost someone close to them from the disease. To be in the company of these people, alongside researchers, scientists, and clinicians was inspiring and humbling.

What was the workshop like?

It was really exciting! It was great to see and hear the enthusiasm coming from the researchers. They were swapping ideas and challenging each other’s thinking until they came up with something they considered worthy of the ‘Grand Challenge.’ There was a real buzz in the room – it felt like the researchers had stepped away from the constraints of the research environment and could freely express themselves. It was a privilege to be there and play a part in it.

What happened next?

Following the workshops, CRUK set up a Grand Challenge Patient Advisory Panel, to ensure people affected by cancer continue to input their ideas and advice, and help to shape the scheme. After going to the workshop I applied to be part of the panel, and was accepted.

I am part of a group of seven people affected by cancer who work closely with Cancer Research UK, to help make sure that there is input from patients throughout the whole funding process. I feel very privileged to be part of it – it’s like I’m taking back the part of my ‘spirit’ that cancer took away from me.

Part of the panel’s role was to review the Grand Challenge submissions from the researchers, which was challenging in itself. We had to assess their plans for public and patient involvement, or PPI. Essentially, Cancer Research UK wants the researchers it funds to involve people affected by cancer in developing their research, and to share their results with them.

How did it work?

We worked with Cancer Research UK to develop a scoring system for the researchers’ initial applications for funding to the charity. Each Patient Advisory Panel member reviewed a set of applications. Then we all met up in London – where we agreed their scores and wrote feedback which the Grand Challenge team shared with all the researchers who had applied.

We also worked together to write PPI funding guidelines to help researchers develop the Public and Patient Involvement plans that must form part of their full application.

What’s next?

The Patient Advisory Panel will be involved in reviewing the full research applications, and we will be sharing our feedback with the scientific review panel. After the awards have been made I would love the Grand Challenge to carry on, and to be involved with it in some way.

In the short term I hope this research develops some new and better treatments that benefit patients soon. In the long term, I hope the research will move forward and will help to advance future research programmes.

What has being involved meant to you?

I’d like to think that, through being involved in research, I’ve used my cancer experience to benefit others and build a brand new life for myself. While I wouldn’t want cancer to find me again, I see it as one of the most profound and positive changes in my life. It’s enabled me to meet and work with tremendous professionals and patients dealing with this awful disease and help research to benefit people with cancer in the future.

Cancer Research UK offers so many opportunities for patients and the public to become involved in their work that there is something for everyone. Being involved has given a new meaning to my life; it’s the best thing I’ve ever done.

Find out more about Cancer Research UK’s Involvement Network and about how you can use your cancer experience to influence our work by visiting our webpages or by emailing [email protected]