Grandma football

Grandma football was diagnosed with kidney cancer and had a kidney removed using keyhole surgery. She feels proud to have contributed to the 100,000 Genomes Project and feels that the process of participation is done in a relaxed manner by well trained staff.

Grandma football was diagnosed with kidney cancer and had a kidney removed using keyhole surgery. She didn’t need any other treatment and for the next three years, she will have follow-up checkups. She was quite shocked to have been diagnosed with cancer because it is not a disease that has affected her family that much. At the time of her diagnosis, she was also invited to take part in the 100,000 Genomes Project, she felt a bit overwhelmed, but was also eager to be a participant in a medical project that could provide answers as to why she developed cancer. She said it was the right time to ask but because of the timing she said: I don’t think you do think things [through] too deeply’.

She was with her three children when the consultant introduced the Genomes project and invited her to take part and they all thought it was a necessary project. Later, she met with the research nurse who went through all the information with her and together, they did her family history and she was sent a copy. Grandma football found the nurse to be very good and easygoing, especially because her family is quite large she is one of twelve siblings so there was a lot of note taking to do! She hopes the Genomes project will be able to crack the genetics involved in the development of cancer.

In general, Granma football does not think that any aspect of her experience as a participant needs improving whether it is information, sample taking, data storage or taking consent. She feels that the process of participation is done really well in a relax manner by well trained staff. The one thing she suggested improvement was for Genomes England to send a letter following participation telling people that things went well and when they should expect to receive their results. She is unsure as to when she will get hers.

Grandma football is concerned that drugs companies could potentially financially benefit from the Genomes research by developing expensive drugs and treatments. But, she accepts that partnership between public scientific research and private companies are necessary to advanced much needed therapies. Her main reason for participating in medical research is to help find answers and treatments for illnesses like cancer that are affecting society in general. She feels proud to have contributed to the 100,000 Genomes Project.

Grandma Football presumes the samples are kept in a safe place and thinks its just another bit of our data that’s stored somewhere.

Age at interview 70

Gender Female

Age at diagnosis 70

Tell me about what you understand about how your data will be stored.

Well it won’t be attributed to me. It will just have it’s own number. So that’s fine and it will just be kept wherever you keep your data. You know. On a computer somewhere I presume.

Yeah.

In a safe place I would presume.

Yeah. Ok so and the sharing is the. So how do you feel about..

I think we’ve got that all over the country, well already haven’t we. Lots of different bits of information are stored on us everywhere. So what’s another bit [ha ha].

Ok.

It’s, you know normal.

Ok. And how does it make you feel that you are anonymised, you are just a reference number?

No I felt good about that. Yeah I think that’s how it should be. You know, I don’t want to be identified as a person who is giving this research because it’s not really about me. It’s about the outcomes. So no I don’t mind being a number for that.

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Grandma Football expects that she might hear about the results when she next sees her consultant. She would have liked a letter from Genomics England just to say everything had gone as planned.

Age at interview 70

Gender Female

Age at diagnosis 70

Ok now receiving results or feedback you said that you haven’t received any feedback or results yet?

No, not, not on what the actual reasons behind why I’d got the cancer, no.

In which form would you like to receive those results: in a letter, telephone, I don’t know.

Well if like now I just wouldn’t mind going back to see [consultant], you know, see the consultant. And him say to me, This is what caused it and this is, you know, what you’ve got to avoid in the future. Course if it was going football I’d got no chance I’d still go. Sorry.

[chuckle] If you were

Got that bit out

Not allowed to go back to see your [laughter]

Oh dear, oh dear. Sorry

Your team when do you anticipate receiving results? Did they give you a date?

Well he didn’t give me any indication really but I presume when I go back in February next year he’ll be able to give me a full overview, wouldn’t you? He should know by then shouldn’t he?

After the consent and the sort of the sample taking and everything have you heard from, from them again?

No

do you think that could be improved?

Well I do think that afterwards they could say, we took everything. It was all very successful, you know, within the next 12 months you’ll get the results dah-de-dah.

Ok so that could be one aspect that

Yeah they could send you a letter afterwards to say that everything had gone as planned, couldn’t they?

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Grandma football thought the project might find a connection between the illnesses of people in her family and explain why she got cancer.

Age at interview 70

Gender Female

Age at diagnosis 70

I was quite shocked when I found out I’d got a cancer because within our family we, we weren’t prone to cancer. So it, and I’d had problems with my heart for quite a few years and I actually expected to go out with a heart attack. So it kind of shook me but my brother had already had cancer of the throat as well but that had been remedied. He was fine and fit and dandy. So that was quite good. And I just thought we’ve got to get to the bottom of why I’ve now got kidney cancer haven’t we or cancer on my kidney.

But it was quite interesting looking at how different members of the family had died.

Ok. And the type of illness?

And the type of illnesses that they’ve had. Yeah my great grandmother, my grandma and one of my aunties had had pernicious anaemia. And my mum and one of her brothers had had horrific, no, one and a sister had had horrific leg ulcers so I, I wondered what the connection was. And I did wonder if this Genome Project might, you know, look into all those sorts of things or come up with what different genetics are there that don’t work properly, you know. And they might be what causes these cancers. We don’t know do we?

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Grandma Football felt overall that the process was well explained and staff were well trained.

Age at interview 70

Gender Female

Age at diagnosis 70

Could the process be improved?

No I don’t think so. It seemed very simple at the time. The only thing that I do think like now we’re talking it through I do think perhaps if I’d have had time afterwards to think about the layers I might have been a bit more reticent. So but then like I’ve just said, how would we get the information in the end anyway. So it’s a catch 22 isn’t it. You know. So I do think it’s very well explained and the ti-. When you’re there the people doing the interview with you are very laid back, very, you know, there’s no rush. There’s no pressure. It’s all done very well. I’ve got to be fair. They’re very well trained.

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Grandma Football dislikes that pharmaceutical companies will make money from developing new drugs but accepts the need to share her data with them.

Age at interview 70

Gender Female

Age at diagnosis 70

Yeah I don’t like the thought that people are going to make money out of us. That, that really does absolutely makes me cross but if the only way we’re going to find out about the drugs then let’s do it. Then you can fight the moral side of it later, can’t you but let’s get the, you know, things that are going to cure people first.

Ok so you have a more pragmatic view, practical view?

Yeah. We need to know if, if a drug can be found don’t you? You know and if a private company is going to do the research then I totally agree with them being paid for that research. I don’t agree with them making money out of the treatment that they are going to offer other people afterwards. It stinks but there you go.

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