Bart

Age at interview: 61

Age at diagnosis: 60

Brief Outline:

Bart had a malignant tumour removed after a Bowel Cancer Screening test. He has since had further surgery to reduce the chance of recurrence. He was invited to take part in the 100,000 Genomes Project while waiting for an appointment at the hospital. He did so because he wants to encourage others to take part in bowel cancer screening, as well as to support medical genetic research.

Background:

Bart and is married with one son and one daughter, who are aged 31 and 29. He is a retired head teacher and is white English.

More about me...

Bart took part in the Bowel Cancer Screening Programme and his test showed abnormal readings. A colonoscopy procedure was carried out to remove two polyps, one of which was found to be malignant. He had surgery to remove a small part of the intestine where the malignant polyp had grown to increase the chances of a successful outcome. 

During a hospital appointment, Bart was approached by a health professional who invited him “casually” to take part in the 100,000 Genomes Project. He was happy to be involved because he wants to encourage others to take part in the Bowel Cancer Screening Programme. Another main motivation to take part in the project was to support medical research with the development of new treatments and early interventions. He hopes that this could help to safeguard the health of his children, grandchildren and society in general. Bart feels very positive and grateful for the medical care he has received. 

Looking back, Bart found the information given about the project too detailed and complex. As an education professional he doesn’t think that the style or language used in the patient information pack is accessible to everyone. Nevertheless, he understands that medical research needs to comply with regulations to protect personal information and data. He says he would have signed the consent form anyway because it is genuine research that he feels “deserves support”. 

Overall, Bart found the experience of participating in the 100,000 Genomes Project a positive one. He felt well informed and didn’t find donating of tissue samples problematic. He says that the consent process was done in a friendly, supportive and sympathetic manner. He feels that the health professional that took consent from him understood his situation, and was aware that he had just been diagnosed with cancer. 

Bart urges everybody in his position to sign up and take part in the project because, as he puts it, “the more people that get involved the more information, the more data, the more experimentation that can take place will lead to the breakthrough that we all so desperately need”.

Bart can’t remember who approached him to take part because he was more concerned about what the consultant was going to be saying to him.

Now let’s talk about how you were invited to take part. You said that you were waiting for one of your appointments?

Yeah just waiting like you do and not too long I had to say but a colleague passing through the patients and asking whether they were, had heard of it, were interested in it and an invitation to take part. Well why I wouldn’t really, you know.

Who was this person, a nurse or a doctor?

I think it was somebody associated with the hospital. I really can’t remember because you don’t remember do you? You’re more concerned about what the consultant is going to be saying to you, don’t you? And in the meantime they are talking about tumours and research and you’re thinking well I hope I really can’t help you too much [laugh]. So if I had to I would. I just felt that it was why wouldn’t you? Why would you say no to such a thing? It’s just a matter of them taking away what they are going to take from your body, examining it, researching it, testing it, developing whatever they develop. That’s the field that you guys work in and everybody has a great, a great deal of encouragement by what’s being done. So I had no hesitation whatsoever of taking part.

Although Bart hadn’t heard of the project, his son works in science and he knows about the importance of genetic research.

Had you heard of the 100,000 Genome Project before?

No I hadn’t.

No?

No, no but I was certainly aware of cancer research and certainly aware of, you know, through family, my sons own academic experience of working in science. He would have talked about it quite regularly. So no the importance of looking and studying family genes and how that impacts on the development of the human body and the immune sources and where these cancers come from. You know the modern age we all understand smoking is not very good for you but we’re all beginning to understand that air pollution is not very good for you either is it. So we can’t live in a bubble so if everybody signs up for it we’ve got a better chance of, you know, being where we need to be but everybody has got to play their part haven’t they.

Yeah so it was sort of your family background has this knowledge kind of

Yeah

Scientific knowledge.

That’s right and obviously I’ve got an academic leaning, you know, pull for it and we understand the impact of cancer of the immediate family, lost my mother and in other parts of the family we’ve had people who have, you know, suffered great distress and we’ve all lost uncles and aunts and cousins and I don’t think we are alone in that are we? Every family’s experiencing the same.

Bart found the part about data protection “quite technical” but wasn’t surprised and thought it was appropriate given the subject matter.

Now how did you find the information they gave you about the Genome Project. 

It was fairly complex but in truth, the detail I thought, you know you are filling out these things and I understand why you have to answer all of these questions because of they’re protecting data and protecting personal information and so on. But I would just scan them I think [name] and know that somebody had put that together thinking that’s, no this is important. It has to be done so who am I to waste their time. I just signed it and say let’s get on to the main important part of the work.

So when you say complex you said there was too much information you mean?

There was. It was technical yeah it was quite technical really being used to technical language and looking at how you protect data and how you protect personal information. It wasn’t surprise to me that so much had to go through. Of course when you’re talking about intimate sort of body parts and parts of, you know surgery and parts of you being, you know, researched to do that then quite rightly professional are protective over that and protecting themselves as well. But if I see you want somebody coming back and tell you to do that.

And did you, was the information helpful?

It was how …. It was a need-to-do thing. It has to be done. It’s part of the process. Was it helpful? Well, it tells me what was going on but I think I knew the reason why it was being done so that wasn’t a difficult choice for me to make.

Ok so apart from being sort of useful did you find that you need more information or particular information about this project?

Not, not on a personal level. I would respect the fact that you are medical professionals. You’re engaged in a project that’s been approved by the [name] Hospital in [city]. And so people far more important than me would have thought that this was a pretty good idea to do .I don’t, I can’t imagine for a minute some people will say, “Oh just go and do this because it will take a bit of time to take that.” So I don’t think that comes in to it at all. It’s a bona fide medical research project and it deserves the support, one you get the support you’re not going to be able to learn from it are you.

Ok. It’s something that I will be asking as we go along. Is there anything regarding information that could be improved?

Right. Well technically I wouldn’t know I don’t think because of the nature of the sophisticated medical and research that’s taking place but I think you were, you were sharing the, your colleague was sharing enough information to make the whole process secure for me, for you and for future well-being or what eve is going to be found. The overwhelming motivation of course is that if there’s something within my sort of makeup, my, DNA make up whatever, gene whatever that can be used to secure my future families to have then that’s a very good thing to do.

No I’m going to ask you a question because I know that you come from the teaching profession and education profession, this information that is given to the public do you think that the style or the language is accessible for everybody?

No I wouldn’t have thought so. You would have to have a reasonable level of understanding to be able to grasp the technical nature of it all. But I think the concept is there. I do think the over-riding principles behind your, what your work is are easier to understand than the, the minutia of the detail. But I understand why that detail has to be there. I think most people would trust medical professionals. I do feel, you know, that we need to trust each other a little bit more.

Bart’s son studies biology and chemistry so he understands the importance of research. He wanted to participate to help others in future.

Ok so your participation was to help?

Well encouraged because our children are studying in higher education and my son has a master’s degree in biology and chemistry. And obviously having that sort of background and understanding the importance of research then if I could share anything or if anything was found in any tumour that was removed that would be helpful, you know, to doctors and researchers and to the overall well-being of everybody. Something could be gained from that. And also because my mother died from bowel cancer and so the chances of my brother and I having bowel cancer are significantly higher than, you know, maybe that wasn’t in the family. So if it has been found in me and it’s been dealt with I’m grateful for that. You know there could be a possibility that some early intervention in the future would save my children and possible grandchildren from, you know, further or any distress really in this field.

So that’s where sort of the reasons are in medical research

Yeah. Well it’s just a background of having that it’s the right thing to do. And as I say my mother died of bowel cancer in 1979 and medical research and cancer research has come on leaps and bounds and the sort of treatment that I received was just not available to her. And the drugs that are available but most of all the importance of like looking after future generations.

Bart believes everyone should sign up to be involved in medical research to develop understanding of how our genes contribute to cancer.

So what is your general attitude to the idea of taking part in medical research?

Well absolutely positive. It’s the only way forward isn’t it. And if we all sit back and say, “Well it’s nothing to do with, it’s something to do with somebody else and then you hear of so many tragedies don’t you. And so having worked in education for 40 years I came across many children who had suffered from leukaemia and extended families had lost loved ones through, you know, aggressive cancers and the colleagues who have sadly passed away. So being in a profession where you, you meet many, many people you know that it’s out there and it does hit home and it impacts with great ferocity really in a, in a family. So we’ve got to fight it and we are. And so there’s no doubt and please god within a few maybe decade, two decades, three decades it could be a thing of the past couldn’t it.  And we might be able to identify it at source, you know at the earliest part of life that you have a gene that could develop into, you know, cancerous tissue later on in life. Let’s deal with it now then. Although I’m not a medic and I know I talk in very naïve terms but I think that’s what we would all want, want to sign up to.

Exactly that’s your attitude about why this is important. Had you heard of the 100,000 Genome Project before?

No I hadn’t.

No?

No, no but I was certainly aware of cancer research and certainly aware of, you know, through family, my sons own academic experience of working in science. He would have talked about it quite regularly. So no the importance of looking and studying family genes and how that impacts on the development of the human body and the immune sources and where these cancers come from. You know the modern age we all understand smoking is not very good for you but we’re all beginning to understand that air pollution is not very good for you either is it. So we can’t live in a bubble so if everybody signs up for it we’ve got a better chance of, you know, being where we need to be but everybody has got to play their part haven’t they.

Yeah so it was sort of your family background has this knowledge kind of

Yeah

Scientific knowledge.

That’s right and obviously I’ve got an academic leaning, you know, pull for it and we understand the impact of cancer of the immediate family, lost my mother and in other parts of the family we’ve had people who have, you know, suffered great distress and we’ve all lost uncles and aunts and cousins and I don’t think we are alone in that are we? Every family’s experiencing the same.

Bart wishes he understood the project a bit more technically and hopes that there will be much-needed breakthroughs in the future on cancer.

Yeah I mean I think it’s fantastic work that goes on. I wish I knew more about it. I wish I understood technically what it is all about but I don’t need to but I would just urge everybody in my position to sign up for it because the more people that get involved the more information, the more data, the more experimentation that can take place will lead to the breakthroughs that we all so desperately need. And I’m looking forward but I know I won’t be here for much more than that but 10, 20, 30 years and we could be living a very different world regarding cancer. Something else might come and takes its place but in the meantime it’s been a curse and in my own family we’ve lost loved ones. And it would be lovely to think of the world with professionals working the way that they do it will be eradicated just as soon as humanly possible. I don’t think we are that far away.