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Ovarian Cancer

Communication with health professionals

Ovarian cancer can be distressing and difficult to cope with. How health professionals communicate with patients is crucial in helping women to understand their disease and its treatment and to come to terms with it. 

Many praised the treatment they had received from their doctors. Women greatly appreciated being cared for with kindness and sensitivity, being treated as a person rather than a number or an illness, and receiving personal telephone calls from consultants rather than from secretaries. Some women said they appreciated straight talking from their consultants. Others said their consultants encouraged them or inspired confidence.

 

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Praised her doctors for straight talking.

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Praised her doctors for straight talking.

Age at interview: 59
Sex: Female
Age at diagnosis: 50
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What do you think of the health professionals who've cared for you?

Oh they've been brilliant; yes, absolutely brilliant, yeah. I've got, I just can't say anything against any of them, they were all wonderful and the lady gynaecologist who actually did the operation was absolutely brilliant and so down-to-earth and so straight with me. I mean, I wanted answers and I wanted straight answers and they gave them to me. But on the other hand, they weren't, I can't think of the word, they weren't over-optimistic so that they weren't trying to pull the wool over my eyes at all. I asked for straight answers and they gave them to me and I'm sure, thinking back now, they did.
 

Not all, however, had such positive experiences. Some women complained that their consultants had been insensitive or patronising. In some cases the diagnosis could have been delivered with more kindness or at a more appropriate time and place (see 'Learning the diagnosis'). A few women disliked their consultant so much that they asked to be treated by someone else. One woman was angry with a doctor who had told her she would never get cancer again, yet she developed a recurrence after 10 years in remission. Another recognised that her consultant communicated badly because he desperately hated giving bad news. 

 

Her oncologist spoke to her in an insensitive way.

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Her oncologist spoke to her in an insensitive way.

Age at interview: 38
Sex: Female
Age at diagnosis: 33
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It was a few weeks before they could start the chemotherapy. I remember in the intervening period talking to the oncologist about the chemotherapy treatment saying 'Well you know'.' Well I had , I had two concerns about the chemotherapy' one that would destroy my fertility, and he rather sort of, I guess, tactlessly said along the lines of, 'In your condition dear you shouldn't really be worrying about children! Think of adoption if you have to'. Which was rather insensitive! I'm sure he didn't quite mean it that way. And secondly having to sign a form to have an AIDS test before I could have, you know, obviously chemotherapy as it reduces your immunity. To which I said, 'Well, that will affect my life insurance policies!'. But I think the answer was equally on the lines of, 'That's the least of your worries at the moment really', sort of thing, so you know, kind of, I was still getting quite negative messages from the medical profession.

Although some women said that they thought communication was almost as important as an ability to treat, one was clear that she would rather be treated by a good surgeon with 'an unfortunate manner' than a nice person who was 'a bad surgeon'.

It is often hard for patients to know what questions to ask and some women said that doctors did not volunteer enough information. Doctors sometimes appeared to be too busy to spend time with patients or answer questions. Increasing the number of doctors could help with the time constraints, but women suggested that doctors could also point to other sources of support and cancer information.

 

She found it hard to know what questions to ask - her doctors did not tell her enough.

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She found it hard to know what questions to ask - her doctors did not tell her enough.

Age at interview: 48
Sex: Female
Age at diagnosis: 48
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The only thing I would say is that if you don't know what questions to ask, you won't get the answers. And it's taken me quite a long time to work out what questions to ask, and so if I have any criticisms to make at all, it's that they just don't give it to you straight. You know, they wait for you to ask, and I can see that, or I know that some people don't want to know everything, or everybody comes to things in their own time and stuff. But that's been a bit frustrating for me, this kind of crawling towards understanding my disease. 
 

 

Her oncologist always seemed too rushed to spend time with her.

Her oncologist always seemed too rushed to spend time with her.

Age at interview: 52
Sex: Female
Age at diagnosis: 50
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The one complaint, if you like, I would have, would be the Oncologist himself, he just seems so totally overworked that he is always moving at the speed of light. And I appreciate how many people they have go through Oncology, you know, because we used to, while we were up there all that time, talk to the receptionists and so on about how many patients they saw of a week, although, obviously, he specialised in gynaecology, but, he always seems in a bit of a rush. And even with the check-ups, he has a bit of a flushed face, and I often think, 'Have we got blood pressure?' you know, 'because you could quite easily have in your job'. And, as I say, he does always seem to be sort of one foot in the door and one foot out the door, and he seems to be as if he's' you know, 'Can you hurry up and finish that sentence, because I've got to be somewhere'. 

When asked to give advice to health professionals women most often mentioned communication, saying that communication skills needed more attention. Doctors should better understand how patients react and be sensitive to their needs; in particular they should be given time to take in their diagnosis before being overloaded with other information or asked to make decisions. Doctors should be kind, respect and listen to patients and involve them in their treatment, take the time to talk frankly and explain thoroughly and patiently, even if this means repeating some details. They should not be patronising or use jargon, and realise that insensitive remarks can have lasting effects on patients.

 

Advises doctors to explain things in simple terms and to allow patients time to take in their...

Advises doctors to explain things in simple terms and to allow patients time to take in their...

Age at interview: 58
Sex: Female
Age at diagnosis: 44
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I think one of the important things is to try and explain in easy-to-understand terms, because we're not all medics and we're not all that bright. You know, I think it's important to be able to understand in layman's terms what's going on, because there were certain phrases that were used when I was in hospital and because I think you're all, with something like this you, you are in such a state of shock or disbelief or fear or whatever, your brain doesn't always take in what's being said to you. And also in my case, because it was all happening after the operation, I think I still had a lot of anaesthetic in me or something and I'm sure my brain wasn't working properly, because it's not until after the event, and some time after the event, that you think 'Well, wonder what that meant?' or 'wish I'd asked that'. Because there are terms that, you know, just don't mean anything to you if you're not a medic. And we're not all, I'm not, certainly not very bright. So I think, yeah, try and explain things in easy-to-understand language, not too technical really.

 

Advises doctors that insensitive things said can have lasting effects on patients.

Advises doctors that insensitive things said can have lasting effects on patients.

Age at interview: 41
Sex: Female
Age at diagnosis: 40
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But I think the way they tell you, I mean I know they're dealing with this every day and obviously the statistics for ovarian cancer for survival are not very good, so most of your time at work is spent with people who actually have a very limited life expectancy, but I think probably they don't realise that whatever they say, you know, those are the words that ring round your head at 3 o'clock in the morning when you can't sleep. 

And I could quite accept that, you know, there was no guarantee that I was going to be cured, and I had been told that by the Macmillan nurse, but she'd done it in such a way that it wasn't resounding round my head at 3 o'clock in the morning. So I think, you know, the bedside manner could be a little bit kinder. 

Hospital nurses were frequently praised for their skills and compassion and for creating a friendly atmosphere in the chemotherapy units. They often made themselves available day and night for patients to phone if they had problems. Nurses also sometimes asked questions on behalf of patients, acted as go-betweens with consultants or sorted out practical problems, but their reluctance to interpret test results could be frustrating.

 

Praises the chemotherapy nurses for their skills and for creating a friendly atmosphere in the unit.

Praises the chemotherapy nurses for their skills and for creating a friendly atmosphere in the unit.

Age at interview: 44
Sex: Female
Age at diagnosis: 41
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How have the staff been all the way through this, the staff at the hospital, and the chemotherapy unit? Any comment on them?

Chemotherapy absolutely wonderful. You know, all the nurses there were wonderful, I felt like I was going to see an old friend every time I went there. And you know, when you're at the end of the treatment and you're obviously doing well, you know, they're very, very happy for you and they're evidently so. And, you know, it is like saying goodbye to an old friend. You know, you're there for such a long time you get to know them, you know, quite well, and their characters and different personalities, and they get to know you quite well. I couldn't fault them at all, you know, they give a hundred and ten percent, and they're brilliant, wonderful.

 

Praises the chemotherapy nurses - they made themselves available 24 hours a day for patients with...

Praises the chemotherapy nurses - they made themselves available 24 hours a day for patients with...

Age at interview: 61
Sex: Female
Age at diagnosis: 54
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I found the people at the hospital hugely helpful, the kindest people when you consider their job on a cancer ward. They were the nicest people, and the thing that impressed me most was that they sort of looked at you as you went home and said 'if you have anything at all that troubles you, always remember you do not have to put up with it' and that stuck really in my mind. I felt that was the best bit of advice I'd been given. And were always prepared to answer the phone 24, 24 if you had cancer related side effects or symptoms that you didn't understand or you couldn't cope with, very, really very helpful.

Although oncology nurses were highly appreciated, nurses and auxiliaries on general wards were occasionally criticised. Agency staff were seen as a particular problem because they did not know the patients. Nurses were very busy and did not always have enough time to give emotional support. Not everyone wants to be treated differently because they have cancer, for example one woman felt that a nurse didn't talk to her as a normal person and another said she wanted normal, business-like communication, neither serious nor flippant. One woman was upset by a nurse who told her, “It's not the sort of gynaecological cancer I would want”. 

Women also commented on Macmillan nurses, whose role is to provide support and information to people with cancer - and their families, friends and carers - from the point of diagnosis onwards (see 'Resources' section). Women praised them for being helpful in talking with them about their illness and treatment. Some women were alarmed by being introduced to a Macmillan nurse because they thought that, as in the past, Macmillan nurses were brought in to help people only when they were dying. One woman disliked the rather jolly attitude of one of her Macmillan nurses.

 

The Macmillan nurse discussed her illness with her and her family.

The Macmillan nurse discussed her illness with her and her family.

Age at interview: 49
Sex: Female
Age at diagnosis: 48
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So once I had the diagnosis, I had the morphine, the pain control was much better and I had a visit from a Macmillan nurse who was very, very nice and she saw my partner and her children together and me and talked about the implications of the illness and how to manage the morphine just anything we wanted to talk about, she was really good.  

Many expressed sympathy for the doctors and nurses who work in cancer care, recognising that it must be hard to work in an environment where so many patients get bad news. Women were often agreeably surprised by how good their cancer teams were, saying they 'couldn't be faulted' and describing them as brilliant, wonderful, amazing. Some had not expected such high quality care and communication in the NHS and thought they had been lucky.


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Last reviewed June 2016.

Last updated November 2011.

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