Cancer (young people)

Messages to future doctors and nurses

The young people we interviewed were asked whether they had any advice to give doctors and nurses, based on their experiences. The biggest issue was about doctors and nurses being able to communicate well. Health professionals are not always brilliant at explaining things in the most suitable language. So that young people can understand and do not feel that they are being patronised. Nurses were seen as being much better than doctors in this respect. It may be that they have more time and the young people get to know them better; it may be that they are closer in age to the young people themselves, and as a result of this it may be because they use more everyday language. Other specific bits of advice you had included;

Talk to us, not just to our parents.
Cancer doctors need to understand the effect that their attitude has - we pay as much attention to your manner and attitude as to what you are actually saying.
Use ordinary everyday language- not 'doctor speak’.
Establish a good rapport so we feel able to ask questions.
Be more relaxed and less self-consciously 'professional’ and 'formal’.

Thinks it's really important that doctors are aware of how much their attitudes affect patients.

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Thinks it's really important that doctors are aware of how much their attitudes affect patients.

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Age at interview: 24

Sex: Female

Age at diagnosis: 17

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When I first went to hospital to start my chemo, the oncology doctors were really negative about my prognosis. I imagine being surrounded by so many poorly people everyday must make you feel negative but I do feel that it's really important for them to be positive and remember that people do get better. I felt that I was fighting not only the cancer but also this negative attitude.

But the surgeons are, I suppose, doing something very positive. They are physically taking away the cancer and giving you a new knee or whatever. Certainly the surgery people were very positive. On the flip side though, because the oncology people had had such a tendency to be negative it made it even more incredible when they finally said that I was cured.

So you think that doctors dealing with young people need to be aware of how powerful their attitude can be?

Yes. Because everyone is terribly sensitive and will tend to assume the worst anyway. I used to think 'well, if they're saying that and sounding quite concerned it's probably really bad'. Probably they are giving you the worst case scenario because that's what they have to do but you kind of double the probabilities they give you when they sound worried as well. That's why I think it's really important that doctors are positive.

Stephen would like doctors to not automatically dismiss cancer as an option when investigating young people who are ill.

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Age at interview: 19

Sex: Male

Age at diagnosis: 15

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I asked if you had any messages for other people with cancer, have you got any messages for health professionals.

Yes obviously I was misdiagnosed with cancer and across young people misdiagnosis is a huge, huge issue, and obviously it’s statistically unlikely that young people are going to get cancer, so, but we’ve got to be realistic, I’ve got, given my doctor some slack about it, it was unlikely I’d be diagnosed cancer but when I’m in the waiting room feeling absolutely rubbish with x amount of symptom statistically it’s more likely that I’ve got something like cancer or it’s more likely something is wrong, you know if there is genuinely something wrong with me that warranted further investigation whatever it was, but just for whatever reason, probably mainly economical reasons, I wasn’t, I wasn’t referred for a further scan. Which is a shame if I was referred for a scan earlier the prognosis might be better, I might not be having all the treatment I’m having now.

The main message is to be aware that a young person might have cancer, and think about the diagnosis.

Yeah especially when they’ve come to this surgery x amount of times, repeatedly, and not had an explanation of what’s wrong or what even could be wrong really.

Don't give us a biology lecture - just talk normally.

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Age at interview: 18

Sex: Male

Age at diagnosis: 14

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I reckon that they need to make sure that while this, while what they're saying can be understood by everybody, sort of if they want to introduce, if they introduce more complex ideas or something like that, just to keep making sure and just generally have patience because they've had all these years at university doing all this biology and all sorts of stuff and we've not had that. You know some, depending on how far through your treatment you are, you've just been told that you've got a life-threatening illness and you want to know information about it, you don't want lecturing on biology.

So sort of just break it down in to easy to understand bits and just generally try and smile, be friendly and be approachable rather than sort of a frowning sort of not quite sure where you stand with sort of doctor because there's, because it's much easier if they're sort of a friendly sort of personality to get on with. And you feel much more easy to open up to, open up to them about any problems or questions, rather than someone who is constantly frowning and looks as though they've got the weight of the world on their shoulders. I mean perhaps they've got the weight of a couple of lives on their shoulders, but they still need to be approachable. If you see a doctor that's frowning and looks really stressed, you're not going to go up and ask them what might be a daft question, you just think 'Well it's probably a daft question,' ask one of the nurses or I'll just, you know, I'll just wait and see if I find out some day of my own accord.

Doctors were appreciated, when they had a positive attitude and provided information that was specifically relevant to the situation, rather than providing a large number of statistics. For instance one young woman suggested that instead of saying 'Your cancer might come back’ a doctor could say, 'It might not come back, so go and enjoy life’.

Not everyone wants the same type of information - some want to know everything without the 'sugar coating’ while others prefer to hear what’s happening in stages.
A very formal doctor might be fine when you’re feeling well but when you’re really ill and scared you need someone who is both sympathetic and approachable.
Don’t rely on the young person to always ask for information - offer it.
Please keep checking up on us when we’re in hospital - it can be hard to ask for help if you’re very poorly or shy.
Sensitivity and respect are very important - we may not want to be examined by a whole group of medical students who are the same age as we are, but we may find it very hard to say 'no’.
Fertility issues are really, really important to us - we need to discuss them no matter how young we are.
The personal touch is really important - you want to feel that your doctors and nurses care about you as a person as well as dealing with the physical side of your illness.
We need contact with other young people who have been through the same things and understand what it's like - you can help arrange this.
Recognise that our parents and brothers and sisters have an important role in supporting us and that they sometimes need help too.

Young people need more than just a good doctor, they need a good listener.

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Age at interview: 21

Sex: Female

Age at diagnosis: 18

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I think, when you're dealing with a child, or when you deal with an adult, whatever's the matter with them, there are quite set ways that you can deal with them, whereas, sort of, with adults you can be very professional, with the child you are mainly dealing with the adult, or you are dealing with this small child who you don't really have to explain anything to, you just have to make them feel a bit more happy in the situation that they're in. With teenagers and sort of the early twenties, you have to put things at their level, and, therefore - and they don't want to be ignored - they don't want you to talk to their parents instead of them, they want to know what's going on and they need to feel that you're talking to them on their level. So, and that's quite hard to gauge, but it is something which is really, really important. It's important not to be too professional and over the top. The first GP that I had actually made me so scared of going to the GPs that I changed GPs after that, and it was, it was his manner. His manner was very professional and it was brilliant, and it was brilliant for everyone else. And until then, I had never had a problem with him. But because it was something that I was so frightened about, and he was so professional about it, I just couldn't deal with it at all. I needed someone that I could actually go to and talk to about things, so I changed to a GP and she was lovely. She, she would sit down and she would ask how I actually was and that kind of, that kind of thing, so from the' from the sort of general practitioner and sort of nurses perspective, they need to be someone that you can chat to about things as well as the medical problems. Especially because I was in hospital for such a long time, I did talk to nurses quite a lot about... random, the Ball I was missing, and what all my friends were wearing and that kind of thing. So it's more of a, a social worker type side that a nurse or a doctor needs to have if they're dealing with young people, just to get on their level, and talk about the kinds of things that they want to talk about, especially if they're in for a long time.

Understanding that you might not necessarily want to be the object of 50 medical students coming round. I never minded, but I know people who, one of the girls I was treated with, really hated it, but she didn't, she never felt that she could actually say so. And because you're at quite an embarrassing stage of your life, you don't necessarily want 50 gorgeous male students looking at you when you've got no hair, and you're, like, five stone. It's not really something that you're always going to feel comfortable with. So I think that's something that's quite important to consider. I can't think of anything else. I'm sure I'll think of something else that's really important [laughs], but I can't think at the moment.

Doctors don't need to wear bandanas or to act like young people to be more sociable.

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Age at interview: 17

Sex: Male

Age at diagnosis: 14

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Yeah. I think one thing that I'd tell doctors would be to make the, make the, to have more sort of, I know they're really clever and everything, because they have, like, big degrees in this and that, but to be, at the same time, more social, because all my doctors were always very were frown like, 'This is this', and they'd point out. It was very serious and everything, not so fun. I think if they were, I know it can make you sound, it's like the doctors should be really, like, professional, but they've got to be professional with kids, so they should kind of find a middle balance kind of thing as well.

Do you think they should learn to communicate with young people?

Yeah. Yeah. Not with slang and wearing bandanas and everything but [laughs] be, be a bit more social, I think, and talk to them properly, without their stethoscopes on and everything, and act all professional all the time. To be more relaxed with them. I think the patient feels a bit more at ease with them as well, feels more comfortable with them. Yeah, because although he's got, like a, like a science appearance sort of thing the doctors with their jackets and' all formal all the time, sure like sort of business, not really, well, because it is your health, they should be more personal than anything else, and you don't feel like that sometimes, because the way, when they, when they talk to you, it's like making a deal about something. Not very social.

Don't be patronising!

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Age at interview: 23

Sex: Female

Age at diagnosis: 17

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When the doctors work with, kind of, us as young people, I think they should know that we are people, and they should never, ever talk to our parents without talking to us. Too many doctors come to your bed, and they'll just look at your Mum or your Dad, or whoever's there. Or they'll even just talk to the nurse, in front of you. We're people of our own and we can understand a lot more than they give us credit for, so they should talk directly to us. And they should try not to sort of blind us with all the long words that they like to use. They should talk to us and try to explain things as best as they can.

So in other words they should take care of the language?

Yeah, I think doctors should look at the way they speak to people. You might get - you know they might go and see some teenager who can understand all the words they're using, but most of the time, you know, we are too ill to even think about what that word means, so they should come and they should explain it - not that they - they should be careful to not explain it, you know, too babyish, you know we want to be talked to as equals. We don't want to be talked to like we're children really.

Last reviewed December 2017.

Last updated November 2014.