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Pancreatic Cancer

Professional care

People we interviewed were keen to praise the care they had in the National Health Service but admitted that sometimes they had not been happy with it.

Adrian had on the whole found the health professionals he had met helpful, sympathetic and knowledgeable. Tony said that he could not fault the care he had received. William spoke highly of the specialist nurse who kept him informed before his operation, and others praised the way their surgeons had explained what would happen (see ‘Communication with health professionals’). Richard (Interview 22) recalled that during his illness he had had a consultant who really knew him and who treated him as an individual. He greatly valued such continuity of care.
 

When his mother was ill Hugh had great admiration for the NHS. The doctors were ‘marvellous’ and...

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To go back to the situation in the hospital. How was the communication between you and the doctors, or your Mum and the doctors?
 
Well great. I mean they could not have been more marvellous. There was a surgeon, who did the operation, and then there was the chemo guy. Then there was my Mother’s GP. And I just thought they were all fabulous.
 
Have you got any advice for health professionals?
 
No. I have pretty much just admiration for health professionals and particularly the National Health, because, as I recall I had screwed up and had not got my mother on private medicine by the time she got cancer. But my Father was, but my Mother for some reason I hadn’t done it, and, maybe because she was always so healthy, and so this whole thing was done largely on the National Health and I have massive admiration for the National Health.
 
So did she have a room of her own? Or was she in a ward?
 
She was in a room of her own. Did we pay? Did they offer her that? I think they offered her that. I can’t remember.
 
Sometimes National Health can offer people rooms.
 
Yes, I think they did, yes, I think they did. I think if they hadn’t I think we would have paid.
 
So the hospital environment was alright as far as you were concerned, the physical side of it?
 
Well yes, I don’t think the physical environment of a lot of hospitals is that fantastic, no-one would pretend they are. The big National Health hospitals in London, but the nurses were just unbelievable, fantastic.
 
Do you want to say a bit more about nursing care?
 
I don’t know much about nursing care except for what I saw, which was, I just thought these people are amazing. And, you know, they earn a pittance, and I always think, whether it’s the normal NHS nurses or whether it’s the Marie Curie nurses whose entire life is spent sitting in the dark with someone who’s dying, and you couldn’t really imagine a more gloomy job, and they earn almost nothing, is if I put them next to my hedge fund friends, I know who’s happier.
 
 

John was very impressed by the doctors and nurses. He observed that the junior doctors in...

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Age at interview: 57
Sex: Male
Age at diagnosis: 52
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Can you say a little bit about the nursing care?
 
Second to none, absolutely second to none, and although I’ve had experience, experiences with different people in hospital and visiting them and things, but to be in that position myself, and just to acknowledge and realise the commitment and hours the doctors and nurses put through is unbelievable. There were some mornings I’d see a young doctor there and he’d be helping out every patient and at half past ten at night he’d still be doing the same thing only to return the same time in the morning and go through that procedure daily.
 
 
And to be fair, it shouldn’t be asked of them. They were always above and beyond the call of duty.
 
That’s good. How was communication between you and the doctors? Did you did, was there always good communication?
 
Yes, absolutely. They, I’ve always found that to communicate with your doctors or nurses or anybody in that position is to just speak to them as normal as anybody else and you get a better response but what I found was that on the daily rounds, for example, they never appeared to be annoyed or disappointed. They always had plenty of time for any questions that any of the patients asked, not just myself.
 
Many people spoke highly of their nursing care in the intensive care unit and on the wards. Davinder was most impressed by the way the nurses changed the sheets while she was still in bed. Lesley said the ward nurses were always there when she needed them. Some remembered the excellent care they had received from specialist nurses, either after surgery or while having chemotherapy. Richard (Interview 22) had a nurse he could ring or email at any time for advice (see ‘Other sources of support’). Vicky had a specialist nurse who would visit her at home. Alison praised the radiotherapists and Helen said the physiotherapists were ‘great’. Ben was well cared for and supported by his district nurse and others spoke very highly of their Macmillan, palliative care or hospice nurses (see ‘Other sources of support’).
 
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Vicky found the nursing care 'brilliant' on the ward during the day. After she left hospital she...

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Age at interview: 55
Sex: Female
Age at diagnosis: 53
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What was the general nursing care like?
 
It was, on the whole, on the whole it was, it was very good. I found during the day it was brilliant. I found sometimes nights were bad. 
 
I had partly, you know there weren’t, there weren’t so many on, and more often at night they were agency so they didn’t know your, your history, quite as well as the day staff, and sort of what you’d, what you’d been through. 
 
And because you, when you end up on a ward you end up with people who are having probably some quite minor operations, and you know you’re, you’ve had a major one and I sometimes felt that wasn’t sort of totally taken, taken on board a bit, but on the whole, it was very, very good. 
 
And I was assigned a sort of specialist nurse who I could sort of use to come and see me and call on me, who sort of would liaise between, if there were any problems, you know if I had any particular problems she’d liaise with, with the doctors or consultants or just the staff on the, on the ward if there was anything particular.
 
Could you get in touch with her at anytime? Or did she just come and visit you every few days?
 
Well I could get the staff to bleep her if I really wanted. She was based at the hospital so she’d drop by, particularly over the first, over the first bit.
 
 

After Helen’s operation the physiotherapists helped her to get up and walk, and gave her...

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Age at interview: 49
Sex: Female
Age at diagnosis: 47
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And then the physio come to see you and they start walking you and giving you exercises to do, which you can do while you’re in bed, to start strengthening up your pelvic muscles again. And your abdomen, it’s still very, very numb, and it is difficult. But it did help. And, and they were great. They were very understanding. But it took two physios to walk me, one either side, and I was very unsteady on my feet. And there was one occasion when I thought, I really thought I was going to fall and then they had to keep tight hold of me. But it did get easier, and day by day you could feel the difference.

Some aspects of NHS care attracted negative comments. Some people were upset that their doctors had taken so long to make a diagnosis (see ‘Hearing the diagnosis and prognosis’). Others were concerned about poor doctor-patient communication, and poor communication between hospital doctors and GPs. John (Interview 21), for example, thought that there should have been better communication between his wife’s surgeon and his wife’s GP. His wife, Ann, had been given high doses of painkillers, which made her vomit and made her very drowsy. Her GP found it hard to adjust the dose without more information from the surgeon and sometimes a GP could not reach the consultant at short notice (also see ‘Communication with Health Professionals’).
 
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When John's wife needed to change her drugs because of side effects her GP was not sure how to...

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Age at interview: 69
Sex: Male
Age at diagnosis: 53
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Going back to the earlier months when she had all these various other drugs and wasn’t tolerant to them, I think it might have been helpful if there had been a little bit better liaison between the, the surgeon and the GP at that stage. But I think you will have that as a problem at any time when you’ve been in hospital and you come out, and what you are taking isn’t working or is too strong or not strong enough, you then start to rely on somebody else to modify it, and they haven’t been, been the instigator of that particular drug for a particular reason, and although the note systems are, I think are very good and everybody, everybody was very co-operative, I think when you talk to a GP at three o’clock in the afternoon and you’re looking for a change of medication and for somebody to sort it out, he’s got to make the best decision he can with the limited knowledge he’s got, because he can’t just pick the phone up and say to the surgeon, “Why have you done this? What have you done that?” He’s not going to find him. It isn’t that simple. 

Other people complained about various aspects of care, such as mixed sex wards, lack of hygiene, and their nursing.
 
Ann said that some of the nursing had been wonderful but some had been terrible. Some nurses didn’t seem to know how to make patients comfortable. Ann recalled that nurses spent time ‘chatting away’ at the nurses’ station when she needed them to make her feel better. Fred also said that the nursing care had been mixed. He thought that some nurses were ‘very nice’ but others had been a ‘bit rougher’. He also thought that there had been a shortage of nurses at night time and that some of the auxiliary nurses on duty at night had been very noisy.
 

After Bob’s operation some of the nursing was very good but some was ‘awful’. Bob was...

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Age at interview: 65
Sex: Male
Age at diagnosis: 62
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What was the nursing care like?
 
It was, it was awful in actual fact. I mentioned to a nurse that sneezed three times while she was doing my dressing on my tummy, I said to her, “You need to wash your hands.” And she didn’t answer she sort of went and done it, but she was carrying on doing my dressing. And I said to her, “You need to wash your hands” and I heard her say to another one, “Oh we’ve got an awkward one here.”
 
To another nurse, you know, and I thought to myself, “I’m not being awkward, I’m just stating”, you know with all the kind of C-difficile and all the rest of it that they have these germs in hospital, and I’d just come from an operation, but she, I know that she was an agency nurse from somewhere or other, but I thought, “Well that was wrong”, that she was saying that I’m awkward, and that, number one, or fussy, I think that was, that was the word she used. Or I think both. And then the next one she was absolutely, an absolute love. You know really, really nice, caring lady you know.... 
 
You said the nursing care was awful, was it awful in other respects too?
 
The nursing side of it was, it was just adequate. Okay some people were very good at what they’d done, others were just, not very good at what they done. I’m used to organising things in what I do, and if I run the business like the NHS run their hospitals I’d be, I wouldn’t have a business, to be absolutely honest with you.
 
But then some of, some of them worked very, very hard and were fantastic. And it doesn’t seem to be a you know you don’t get, the product changes because people are different. One person’s different from another, etc. But the whole thing seems to me to be quite chaotic, lack of, lack of the structure, lack of accountability to a certain extent, nobody looking after the standards of hygiene number one, over the top in some, in some ways, and waste of money and then in others, really, really lax.
 
Looking at the small details and filling in the forms, seemed to be too much of that. Not enough of people just walking round with their eyes open, blood on the wall, okay, there from the time that I arrived there, and tea spilt in the ward when I went to the recovery ward. There was, tea had been spilt on the floor, two days later okay, the tea stains are still there. Okay that means nobody had been in, they go around with a fluffy mop that moves the dust from one place to another, doesn’t do anything you know. You clean floors with water, a mop and that cleans floors. Moving dust from one place to another with one hand doesn’t, okay.
 
The cleaners had no direction. They’re not under the auspices of the nurses. The nurses should be telling them what they want done. They work for a separate company which are, which are franchised in, brought in by the NHS. And I just don’t think there’s enough control of how the place is cleaned, not at all.
 
After her operation Ann complained about lack of communication between junior doctors, particularly at weekends. She couldn’t always get a doctor’s attention and felt that this delayed the diagnosis of her life-threatening infection a few days after the operation.

William recalled overworked nurses, who had no time to stop and talk. A great deal seemed to depend on which doctors and nurses were on duty and how busy they were at the time. Carol was upset because when she got back to her ward after her stay in the intensive care unit the nurses got her name wrong. Carol wondered if the nurses knew who they were dealing with. Phil felt that the nursing in the clinic where he had his chemotherapy was a bit ‘impersonal’.
 

After surgery Ann was concerned because the junior doctors did not seem interested in her...

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Age at interview: 62
Sex: Female
Age at diagnosis: 62
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How much were your problems medical problems during those early days?
 
I think a lot of them were medical. I saw the consultant every day, he would come round, but there didn’t seem to be a doctor who I could talk to about, you know. I saw him, he would come in the morning with the team, and then there was no houseman who I could talk to because she didn’t seem to be interested and didn’t talk to me. And it made me think a lot about what one needs after a big operation. And you actually need someone who is really interested in you medically and why you’re getting, I was getting very high fevers. And eventually it turned out I had a horrible infection in my abdomen and a whole lot of pus had collected which needed draining. And that is not that unusual with this operation, but somehow it took a long time to sort that out. And there was no one I could really talk to about it, who seemed to know what was going on.
 
Did this lead to a delay in recognising it?
 
I think it did lead to a delay in recognising it. And getting a scan done seemed to take longer than it should have done I felt. And draining it seemed to take longer than one wanted it to. And I mean eventually they drained off, a large amount of pus and put a drain in, and then they could find out which antibiotic I needed to be on. And then there was the whole question about whether the specimen had got to the lab. And I just felt no one was making, and that should have been the houseman s-, was making sure all those things happened. And I felt I had to keep asking. And I thought, “Gosh, if I’m doing this and I know what should be done, what about someone who doesn’t know?” Now maybe I was irritating to them and therefore they had a rather bad reaction, but I felt some of that wasn’t as good as it should have been. And, you know, if you look at the scar and everything, that was obviously beautiful and the surgical side had been very, very good. But it was some of the medical input afterwards that I felt wasn’t there. Now whether that’s the way the new set-up is with doctors working shifts, the junior doctors working shifts, or whether it was a particular doctor, or whether it was that really there should be more collaboration between the medical team and the surgical team in the post-operative time.
 
You said at the time that you felt that you wanted an advocate. Who, who do you think this might have been realistically?
 
Well, I felt when I was a houseman one worked with a registrar to make sure you were the advocate of that patient and make sure that you knew and reported. And I felt that wasn’t there really. And if it’s not going to be the houseman, and they, you know, you never knew which one was going to come, but I had one who was particularly responsible, then who is there who look, who’s going to be an advocate? And one of, I mean in a way the nurses are a conduit. But they’re, they have a different function I feel and they’re not advocates in the same way, and it’s a different sort of knowledge which they have.
 
 

Nursing was not consistently good and professionals did not always treat Theadora’s mother with...

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Age at interview: 64
Sex: Female
Age at diagnosis: 45
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You said that in the hospital the nursing care was always very good. 
 
Well not consistently.
 
Did she need a lot of nursing care?
 
In the last three weeks?
 
Mm.
 
She did. She needed, you know she was uncomfortable, and she needed people to sort of move and feed and adjust drips and that sort of thing. The medical care wasn’t always constantly good. And then I mean throughout the three years we had some appalling doctors and nurses involved.
 
Why were, in what sense were they appalling?
 
The generic thing would be their, their inability to deal with somebody as a person, to really understand, to be compassionate, to be thoughtful, to be caring, to treat somebody with dignity. At the worst there was one doctor who was simply incompetent. He was a junior; he was clearly not reading what needed to be done. You know by the time we were in year two, we knew more than they knew. And he wasn’t competent. 
 
While there was much praise for excellent relations with individual doctors and nurses the aspect of care which seemed particularly important was the way in which professionals with different skills within the specialist cancer unit cooperated as a team. Fred described how the whole team came to the daily morning ward round and then different members of the team came back individually to explain their particular area of expertise and offer help if needed. Several of these specialists would give their contact details so that they could be reached easily both while the patient was in hospital and then at home. William was introduced to a link nurse before his operation and has spoken to him regularly since. Carol had a chemotherapy nurse whom she could phone whenever she needed something.
 
Where this failed, patients like Davinder felt very let down. Davinder felt that the physiotherapists should have prepared her for what to expect when she got home. She felt unprepared for difficulties, such as getting out of bed. She also thought that the senior nurse should have organised a home help and personal care for her or that she should have contacted her GP to ask him to do this (see ‘Potentially curative surgery’). Donna’s district nurses had been very nice but she complained that she sometimes had had to wait much too long for them to arrive to give her analgesic injections.
 

Donna was very upset when the district nurse did not arrive for hours and so could not give her...

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Age at interview: 54
Sex: Female
Age at diagnosis: 53
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Can you tell me a bit more about the problem with the district nurses, without mentioning any names?
 
Well, we found that the trouble is with it is when you phone them up ideally you would phone them and then they would turn up within the hour, but that wasn’t happening, it was taking, you know, hours and hours for them to arrive and the pain was getting worse for me until it got intolerable. And then when I was getting the injection it wasn’t as effective because I’d had to wait so long. I mean the longest wait I had was six and a half hours and by then I was ready to climb the walls. It was just awful. But there was no way round it, you know, they couldn’t make a special case for me although I was prioritised, apparently, but somehow it never seemed to get through to the people at ground level, that I was a priority case.
 
And what were they like when they did turn up? Were they nice or…?
 
Oh, very nice. They were lovely ladies that did the injections, you know, very efficient, very kind, you know, couldn’t fault what they were doing. It was just the system that was in place, unfortunately.
 
The team approach was equally important in General Practices where GP’s were able to organise district nursing, physiotherapy, counselling and other services directly. People who praised their GPs appreciated being made to feel that they were special, not having difficulty getting appointments, good arrangements for getting prescriptions, regular telephone contact and home visits, and appropriate referrals for additional support. Lilian said she had had ‘wonderful treatment’. Her GP had been very supportive and had told her that she could visit the surgery at any time for advice, at the same time letting her know that she was prepared to visit her at home if the need arose (see ‘Other sources of support’). The receptionists at Lesley’s practice allow her to phone for prescriptions which would not be allowed normally. Ben particularly appreciated the way his GP surgery would give him quick appointments and enabled him to renew his prescriptions through the pharmacy.
 
A few people we interviewed had had private health care. Alison said that medical and nursing care that she had experienced had been ‘brilliant’. After the operation she went into the High Dependency Unit; later she had her own room where the nurses had plenty of time to chat with her.

(Also see ‘End of life and professional care’ and ‘Other sources of support’.) 


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Last reviewed September 2018.

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