Stephen

Age at interview: 18

Brief Outline: Stephen has been a PPI representative and a member of a teenage and young adult clinical studies group for about nine months. He is particularly interested in cancer research since he was diagnosed with colorectal cancer when he was 15.

Background: When we interviewed him, Stephen was single and living with his parents. Sadly Stephen passed away in May 2014. Stephen became well known for his bucket list wish to raise £1 million for a cancer charity. At the time of writing he had raised over £4.3 million. Ethnic background: White/British.

More about me...

Stephen is a member of a Teenage and Young Adult Clinical Studies Group and a Consumer Liaison Group. He has been involved in PPI in cancer research for about nine months after responding to a call for participants made by the Youth Support Coordinator at the hospital he attends for cancer treatment. After experiencing symptoms for five months, Stephen was diagnosed with colorectal cancer when he was 15. He says this delay in diagnosis is often typical because doctors do not expect to see teenagers with such serious illnesses and symptoms are overlooked or misdiagnosed. Late diagnosis is one of the key issues his PPI group focuses on. 

When he took up his position, Stephen attended a three-day training course about PPI in cancer. Here he was introduced to the jargon that might be used and what was expected of him as a lay representative. Initially the experience of being a young PPI rep was a little daunting for Stephen, but he relaxed into the role and enjoys what he does. He feels his opinion is valued by other group members, clinicians and researchers. They are all there for the same reason: “To try and improve research”. 

As a PPI rep, Stephen reviews participant information sheets, research proposals and helps researchers devise the questions they should ask in interviews or on questionnaires. He sees his role as offering a patient perspective and tailored advice on research. He thinks including PPI can lead to research becoming “more efficient, more accurate and more reliable”. He feels he can make a difference for other people by taking part in PPI and finds it quite rewarding. Some of the key messages he tries to get across to researchers are that they need to be sensitive to their participants, and provide feedback on the results. He writes a blog facebook.com/StephensStory about his experiences of cancer, and uses social networking sites to raise money for the Teenage Cancer Trust. He is an advocate for the use of social media in engaging participants in research. 

Originally Stephen wanted to become a doctor, but his long-term health is now in doubt. PPI is a way for him to help others on an even larger scale than he might have done as a doctor. He believes anyone can get involved in PPI in cancer research: “Cancer touches that many people now I think everyone could easily get involved and be good at what they do”. As he has cancer, Stephen sometimes finds his PPI work has an emotional cost. But he believes his work will lead to fewer emotional concerns for patients in the future and this outweighs all other costs.

Understanding the patient view can help doctors make their research more meaningful and relevant.

But yeah, the patient view, certainly over kind of compared to what it was, say, ten years ago is vastly become more important, and rightly so, in my opinion.

Do you think that it was really there before clinicians and researchers were kind of guessing or imagining or…?

They weren’t guessing. They were probably trying to do things in their best interest, but I think it’s important to remember patients. Without patients you wouldn’t have kind of any studies or any kind of research, so I think it’s important to involve them. If not, just kind of as a form of respect.

What do you think most people think the role… what’s the point of PPI?

It’s to make research more efficient and more accurate and more reliable, and make, sometimes make the results more meaningful, and it kind of guides the way for researchers into what they should be researching into. Because obviously they’re doing research for patients, but if they don’t know what patients want and that’s probably not the best way forward.

It can be hard talking about cancer, but it’s a way to help others now Stephen can’t train as a doctor.

Does it have a sort of an emotional cost, the PPI for you? What would you say?

Yes. Because obviously… I’ve experienced cancer, obviously it has its afflictions and obviously kind of having to kind of discuss it so objectively, some of the time, can be quite, yeah quite hard. But, at the same time, I think kind of benefits outweigh any negatives and you’re there to kind of help out and improve research and kind of make less emotional concerns for patients in the future. So I think that kind of outweighs everything.

As I say all this is up in the air, because my long-term health is in doubt. So I’ve decided not to study medicine, but originally, yeah, medicine and kind of still having this kind of patient and public kind of backdrop probably. I think they’ve complemented each other quite well.

Do you think the involvement has made it some way, made you change how you think about yourself?

Yeah, I’ve always wanted to kind of help others and become a doctor, but doing it kind of indirectly through research... it’s a different way of doing it because the stuff is not personal one-to-one helping another person, but it’s still a way of helping others, and helping others probably on a kind of grander scale and helping more people you see. So I think yes, that’s helped me a lot.

What have you particularly enjoyed about taking part over the last six months? What have been the kind of highlights of the things you’ve really enjoyed or perhaps you’re naturally good at?

I just like the kind of social interaction with all the different people you get to meet and then, the main thing is that it’s for a kind of good cause, and you feel like you’re making a difference and that’s the other important thing. 

Stephen attends cancer clinical studies group meetings and conferences. He may speak at a conference for young people with cancer.

The majority of meetings are in London. There’s around three or four of them for the main Clinical Studies Group which I’m part of. Then I’m also part of a sub-group, biological studies sub-group. They meet around twice a year, although normally one of those meetings is via tele-conference. And as well they may be different kind of meetings and tele-conferences for different studies and kind of different things like that. So, as I say the majority of the meetings are in London. As well, there’s different conferences we often go to. I’ve been up to Liverpool for one, and the next one’s in Brighton I think. And I think I’ve also been to a conference in Birmingham as well. And then there’s also a few kind of meetings that happen in Leeds because that’s where a lot of the kind of core patient and public centres and coordinators are kind of based.

Do you see yourself giving a talk at any of these conferences that are coming up?

In the future, yes, it has been mentioned before that is something we would be expected to do and as I say, in the kind of teenage and adult spectrum, there’s this conference called ‘Find your Sense of Tumour’, and it’s kind of been shown that a young person speaking to a young person, is often more effective than a researcher talking to a young person. So it would be used to maybe give, to feedback results and then maybe be asked to kind of coordinate kind of, like a questionnaire thing that goes on, interactive questionnaire, so that’s normally run by young people as well.

Young people have busy lives but plenty would be willing. Stephen reaches lots of people through a blog and Facebook.

For me it’s probably been finding time to kind of do all this along time studies and growing up and being a kind of young person as well. But as I say the kind of people who I kind of work with are very understanding about it, and as I say it’s kind of a casual voluntary basis.

Do you think it’s difficult to get young people like yourself generally involved in PPI?

Yes, I would say so, because obviously young people naturally lead very active, busy lives. and obviously with something like cancer, not as many young people get cancer, so there’s going to be a less kind of cohort of people to kind of, to choose from. But I think if we kind of target them down the right routes, there is plenty of people who would be willing to take part.

So I suppose young people are more open to things and to modern forms of technology, and indeed yourself, you’ve already embarked upon a blog. Is that right?

Yes, it’s kind of a, yes, it’s it kind of, I say I’m blogging my life and kind of the things I hope to achieve, say my, my own disease is kind of, not, how can I phrase that, not deteriorated but… perhaps limiting, so what I have decided to do with my time is kind of start up this blog, and raise awareness of cancer in young people and at the same time raise funds and as I say just have a blog and let other people know what it’s like to have cancer.

And have you struck a golden seam, are people interested and actually reading your blog?

Yeah, within, I think it’s not even 4 weeks old yet, and I’ve got 3,000 likes on Facebook. I think, it’s reaching 35,000 people and I have messages from all over different countries, Romania, Australia, USA, all showing their support, and I’ve raised over, probably over ten grand already. So that side of things is really going well.

Stephen describes his bucket list, which includes raising £10,000 for charity.

You mentioned earlier about your blog, and in there you posit the future.  What are some of the things that you’ve listed in there?
 
There’s lots of charity. Different events that I want to organise. Raising £10,000 for Teenage Cancer Trust*, is the first thing kind of on the list that I want to do.  However, basically already done that already, so we’re going to change that to a new goal. Then there’s all kind of crazy stuff, get a tattoo is on the list, learn to juggle, ride a segway, go fly somewhere first class, visit Australia, meet Jimmy Carr, get Tim Minchin to write a song for me, crowd surf in a rubber dinghy, hug an animal that is bigger than me.  There is all sorts on there that I hopefully will get to achieve.

*Stephen passed away in May 2014 having raised £3.2 million for Teenage Cancer Trust. At the time of writing, August 2014, the total had reached more than £4.3 million.