A-Z

Lymphoma

Dealing with health professionals

People who were treated in the National Health Service (NHS) often expressed surprise at how good their care had been. Nearly everyone we talked to was full of praise and admiration for the staff who were routinely described as wonderful, brilliant, fantastic, or marvellous. Staff were praised for being sensitive, caring, understanding and approachable as well as happy to talk and explain things. Feeling trust and confidence in the team really matters to many patients, and staff who allowed their patients time, gave reassurance and helped them feel safe when in the hospital, were greatly appreciated. Some said they had developed really good, friendly relationships with their specialist over the years. Nurses were often praised for their knowledge of chemotherapies and side effects, their patience, friendliness and ability to remember their patients. 

 

Praises the doctors and nurses who looked after her.

Praises the doctors and nurses who looked after her.

Age at interview: 48
Sex: Female
Age at diagnosis: 45
SHOW TEXT VERSION
PRINT TRANSCRIPT
What do you think in general of all the staff that looked after you?

They were fab. Different people, I mean again it's sort of your, one is in treatment long enough to actually develop relationships. The consultant was a dream, the nurses who were also pretty consistently there through it all were fabulous, they knew their stuff. I mean it's a very special person who chooses to become a cancer nurse and learns how to do the chemotherapy business. And the registrars kept changing because of course they rotate on and off and certainly some of them I had better relationships with than others. But having said that, whenever I'm in and if any of them were sort of floating around the hospital we do all still say hello, which is kind of nice that they haven't forgotten me. 

But I particularly got, I got very close to the registrar I had in my last three months of treatment, largely because they were the most difficult to get through, so I think we, I was very dependent on her. But she, and also she knew her stuff, my God she knew her stuff. I mean when the consultations were happening and she was making suggestions, and in fact I realised that there's a back room team because also they have all these meetings that go on about the patients which you're not at. But she actually was sort of querying the consultant, so I actually sort of, there was something about, and the way he listened to her and sort of realised and went with her suggestions every now and then, over the big decisions, it wasn't a suggestion of something small, it was big decision time. And I just thought, 'This is brilliant, this is such a huge team that's working'. So I just think all power to them, you've got this ghastly bureaucracy of the NHS but my God they still manage to do really well within it.
 
 

All the chemotherapy nurses she met in the NHS were excellent; they remembered her personal...

All the chemotherapy nurses she met in the NHS were excellent; they remembered her personal...

Age at interview: 35
Sex: Female
Age at diagnosis: 31
SHOW TEXT VERSION
PRINT TRANSCRIPT
What do you think, you said a bit about the nurses and the doctors before, what's your general opinion of the health professionals that looked after you?

They've been outstanding. I have been really, really fortunate with the health professionals that I've had. And actually, as I come across yet another excellent chemotherapy nurse you have to assume that this is the standard. You know, I can't just be lucky with every single NHS employee I come across. The nurses, do you know, one of the things that makes chemotherapy nurses, I think, seem really, really good is, I don't know whether they have a skill of remembering detail about people or whether they're just very careful to look at people's files very closely before they see them but, you know, they knew my daughter's name, and when I went back they would ask after her. And they see thousands of people so there's absolutely no reason why they should remember her name, but they do. And it's that kind of personal treatment that makes a big difference. When you feel like somebody has personal investment in you that's a very important thing. And I think that the nursing staff, to a man and woman were as, were that good. And you do feel like you're being, you know, that they're willing you to get better, they're willing this to be successful. And it's true of the admin staff as well, although I think sometimes clinic arrangements could perhaps be administratively enhanced. But that's just the way it is.

Although most people described good communication with doctors and nurses, insensitive communication had sometimes caused misunderstanding and anxiety. Some senior doctors came across as arrogant or patronising, and one man commented that although the NHS may need some doctors who are very clever but don't have good human skills, they should stick to what they do well and leave the human part to those who can do it. A woman who didn't feel like eating after her chemotherapy said that she had been told by a nurse to 'eat that up otherwise you'll be tube fed'. Another woman said a nurse accused her of pulling the vacuum bottle off her drainage tube when it had come off by itself. One man said he preferred the more personable approach he had experienced from the more junior doctors, another that he always tried to break down professional barriers by making friends with his doctors and nurses.

 

Her doctors didn't explain properly how much her tumours had shrunk with each treatment, causing...

Her doctors didn't explain properly how much her tumours had shrunk with each treatment, causing...

Age at interview: 41
Sex: Female
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
So what do you think of the various health professionals that have looked after you?

I think they've been very good. There were times where I felt some of the, not the consultants actually but the slightly less senior doctors, registrar level, were unwittingly quite insensitive and particularly where they accidentally withheld information or said things to me that I misinterpreted. I don't think any of it was intentional, I think they'd just become immune to what they're talking about. 

I'm trying to think of the particular occasion. It was when I had had the CHOP chemotherapy and then I had a CT scan and I wasn't told what the results were. And I was told that in order to go ahead with the high dose chemotherapy and the autograft my tumours would have needed to have shrunk by at least fifty percent from their original size. Now after I had the second lot of chemotherapy, the ESHAP, I had another CT scan, I went to see the doctor, and the first thing he said to me was, 'Well your tumours haven't changed size at all since you had the CHOP.' What he didn't tell me was that they had reduced more than fifty percent in size after the CHOP, and he didn't tell me that after I'd had the CHOP. So after the first lot of chemotherapy they could have told me that whatever happened with the ESHAP, the ESHAP was preparing me for the high dose chemotherapy, they could have told me that whatever happened to my tumours as long as they didn't get bigger I would have been able to have that treatment. But they didn't tell me, they didn't think to tell me that. And they sort of announced, 'Oh your tumours haven't changed in size with the ESHAP,' and I immediately thought, 'Oh my God, that means I can't have the high dose chemotherapy', which everything had been, I'd been led to believe was the kind of Holy Grail of getting rid of it. 

And I then sort of forced him to explain, but I had a really horrible few minutes where I thought everything was going horribly wrong. And I think if they'd just been a little bit more thoughtful they could have alleviated a lot my worry. And basically through the whole ESHAP treatment, which was two rounds of quite nasty chemotherapy, they could have told me, I could have known that basically the CHOP had worked really successfully. And that was just a thoughtlessness, it wasn't a conscious thing by anybody.

 

Says at first her consultant didn't like being questioned by her so she told him she didn't like...

Says at first her consultant didn't like being questioned by her so she told him she didn't like...

Age at interview: 27
Sex: Female
Age at diagnosis: 25
SHOW TEXT VERSION
PRINT TRANSCRIPT
Initially it wasn't, I didn't have a very good relationship with my consultant. He had the view of, 'You will do what I say and not dare to question me'. But once we'd had a little discussion or two and we'd kind of evened out the doctor- patient relationship slightly. I didn't like being treated as a shell, as a disease. I was a person. I wanted to be treated with a little bit more respect and humanity. And perhaps I shouldn't have done but I told my consultant that, and from then on we've got on famously and we get on really, really well. 

I wonder if your age had anything to do with his attitude towards you?

Possibly. He was very much old school medicine. And I don't think many people would have said what I said to him because he was quite, he had a bit of a reputation for being a sort of old school scary doctor. And I think a couple of the nurses were a little bit, wouldn't have dared question him as well, but I was the patient, I had nothing to lose by doing so. And I think that really helped. Yeah I get on really well with him now and have total respect for him.

 

His consultant was insensitive in making light of his planned stem cell transplant which for him...

His consultant was insensitive in making light of his planned stem cell transplant which for him...

Age at interview: 41
Sex: Male
Age at diagnosis: 28
SHOW TEXT VERSION
PRINT TRANSCRIPT
I'll give you a classic, I'll give you a classic example. During my stem cell autograft, at the start of that, came into hospital, so I'm now going in for this big, for me a huge event, potentially life changing event, either one way or the other possibly. My wife was with me and a particular senior doctor came in, spoke to me, said 'Yeah OK, right, OK, bit of high dose chemotherapy, bit of BEAM, bit of this, really give you a good blast with that and then we'll give you your stem cells back that we harvested the other month, and that's it, pretty elementary really, straight forward, straight down, you know, in, out, that's it, great.' 

And my, it was all my wife could do to stop from crying, all I could do to hold myself back from punching his lights out, and I just, I found it absolutely incredible, even the doctors around him, the junior doctors around this guy were looking on and were open mouthed at his approach and style and manner with us. And I thought, 'Right, OK elementary, yeah? OK come and sit in the seat I'm in now, I'll stand there and I'll say just what you said to me'. It's a bit like when I'm flying an aircraft if I was to say, 'Yeah OK you can jump in this seat and land the aircraft, make sure you put the undercarriage down and just make sure we end up on the runway and don't come off the end', you know, and I just found it absolutely incredible. 

I lost all respect for that man in terms of being human but I trusted his clinical judgement because he obviously knows what he's talking about, but they had no, he had no place being, talking to me, and I would have happily had a junior doctor sit down for five minutes longer and just explain something, and that would have been fine, exactly the same thing, and I'm sure he would've done it with a lot more sympathy and empathy. And I lost, he lost my respect, pretty sad, pretty sad thing to have to say. And I was very disappointed for the people around him professionally, and yeah there's a few changes needs to happen in the medical profession.

 

Compares consultants at two different hospitals: one didn't allow her to finish her questions and...

Compares consultants at two different hospitals: one didn't allow her to finish her questions and...

Age at interview: 61
Sex: Female
Age at diagnosis: 60
SHOW TEXT VERSION
PRINT TRANSCRIPT
Anyway, eventually, in the middle of August I got to see my local consultant and I went armed with a list of questions and he let me work through a certain number of questions and then he got up and opened the door and held it open and I said, 'Oh, excuse me, I haven't finished asking questions yet' and he said, 'What do you expect me to do about that? I've got a waiting room full of patients!' and I thought that was so insensitive, and he obviously had a spiel which he recited and he didn't do what we used to do in social work, which is 'start where the client is'. He didn't say, 'Do you know anything about lymphoma? Do you know, you know, have you read blah, blah, blah?' with a consequence that I didn't get a chance to have a proper discussion about the fact that I'd read up about all the new treatments and I knew that monoclonal antibodies, rituximab, were the treatment of choice for non-Hodgkin's lymphoma, and I'd also found out that there was a research trial going on and I wanted to be on it so I asked him about it but he said, 'Oh, no, no, that's winding down, that's finished' and I thought, 'That's odd, because why was it still on the Internet, looking very much alive, if it was actually finished' so I had to wait another month till I had my next appointment with him, check my facts and go back armed with the documentation saying this trial is very much, it's still recruiting and it's only just begun to recruit in fact, you know, far from what he'd said, so he then said, 'Oh well, all right, if you want to go on that trial I will recommend you, or refer you,' or whatever the procedure was. 

As a result of the letter that my local consultant wrote I went to see the teaching hospital consultant, who was like a breath of fresh air. He was, he believed in sort of two way consultations, having a conversation with the patient, and at the end of it he said, 'Have you got any more questions?' which I thought was absolutely wonderful, and he's also got, it's making me cry to think of it now actually, because he's so lovely. 

The teaching hospital consultant was everything that a consultant should be. He was, he believed in having a two way conversation with the patient, finding out what the patient wanted to know, making sure that all questions were answered and even using metaphors that would, getting to know his patient and using metaphors to describe the illness that would fit in with the patient's experience, so he apparently said to one patient, or one patient asked him, 'What will chemotherapy be like?' and that patient was a yachtsman, and he said, some, I don't know the technical terms but something like, 'Well it won't be storm force, hurricane force twelve,' whatever it is, 'but it'll be gale force nine' and there was just such a gulf between these two consultants that when I met the one in the teaching hospital I thought, I never want to see the one who'd ignored my letter and who'd refused to answer my questions and who'd actually, well, I'm reluctant to say lied to me about the trials but had misinformed me about the trials. And I didn't feel confident enough of my knowledge at the time to contradict him. 

A woman diagnosed at age 16 reacted very badly to being told she had cancer and subsequently referred to cancer as 'Trevor' and chemotherapy as 'Fred' and was grateful to her specialist for going along with that convention. One young man had found it easier to talk to the nurses than the doctors because they were nearer his age and shared his language and interests. 

A few people said that professionals had made mistakes. A woman said she had to stop a nurse giving her the wrong dose of medication. Another was told that she was going blind when she wasn't. A man was wheeled through dusty building works in the hospital basement when he was very vulnerable to infection. Others were concerned about hygiene. A woman said she did not see nurses cleaning their hands between dealing with different patients. A woman who spent time in isolation while having high dose chemotherapy before a stem cell transplant said she had to share toilets with other patients and that the cleaners did not appear to take special measures when cleaning her room. Other concerns included lack of support from staff and complicated administrative arrangements at hospitals, and frustration at having long waits in clinics for treatment or results. A man was irritated that his doctors changed their minds about whether or not he was in remission. Another would have liked more time after his diagnosis to digest the information he had been given before being rushed off to bank his sperm.

 

Had been taught how to clean her own Hickman line but when a nurse did it she did it sloppily.

Had been taught how to clean her own Hickman line but when a nurse did it she did it sloppily.

Age at interview: 64
Sex: Female
Age at diagnosis: 53
SHOW TEXT VERSION
PRINT TRANSCRIPT
But actually there was something that happened during that week and that was I had the in-dwelling catheter in my chest which needed flushing out into sterile conditions, and although I did it myself I didn't particularly like doing it myself. If I was at a hospital anyway having chemotherapy I'd let them do it. When I was there the day before the operation a nurse cleaned it out and did it sloppily. I'd been told, 'Always make sure', when you're trained to do it, 'Always wipe it with a sterilised alcohol wipe and then wait thirty seconds for it to dry'. And the nurse didn't do this. Actually they never told you how to handle it if somebody does it and doesn't do it properly, how to, it doesn't tell you how important it is to speak up and how to' Anyway I'd watched this nurse taking a short cut and I was so gob-smacked and so inhibited that I said nothing. 

And then after the operation, about three days later, she did it again and started to not wait for the alcohol to dry, so I said, 'Actually when I was taught to do this myself I was taught always wait thirty seconds.' And she said, 'I haven't got time to wait thirty seconds, do it yourself then', slammed the stuff down on the bed and flounced out. Well I did it myself properly but the damage was done on I think presumably the previous occasion because I got an infected Hickman line.

 

Felt isolated when having chemotherapy in a side room in a hospital ward as nurses and other...

Felt isolated when having chemotherapy in a side room in a hospital ward as nurses and other...

Age at interview: 47
Sex: Female
Age at diagnosis: 42
SHOW TEXT VERSION
PRINT TRANSCRIPT
And there were various things which, they weren't the kind of things that you would want to make an official complaint about, but I wasn't always treated, well I was misinformed in some things, and often when my drips ran out, I was on a pump, I would have to keep ringing my bell for them to come and to change them, and I was sometimes a bit frightened that there was going to be an air bubble and, you know, you don't know, do you? You get a bit sort of panicky about these things. So, and I was in the side room a lot of the time, which was very good in some ways but you were sort of a bit invisible. I mean there were times when, one day I went 6 hours and nobody came to say anything to me or see if I was all right and they just, and when I did get quite upset about having been left my husband complained and they said, 'Well why don't you ring the bell?' And, I said, 'But, I'm not that kind of a person, but it would just be nice if you came and said, 'How are you doing? Is there anything I can get you?? or'' 

What about the doctors? What were they like?

Again I didn't see them a lot. They would sort of march in and say, 'How are you?' Look at the chart at the bottom of the bed and walk out again. There was very little chat. I did notice the person in the room next door was a man, and my haematologist is a man, and they would chat a bit more. I don't know, I don't know whether it was just because they didn't know what to talk about or, he wasn't unpleasant at all but, yeah, they were OK. I, there was a co-ordinator as well when I had my stem cell, a transplant co-ordinator who actually was supposed to be the person that could give you the time to answer your specific questions that you didn't like to ask anybody else. I could never get hold of him, or rarely get hold of him, and I actually didn't find him helpful at all. And I only ever saw him once, twice, in the three and a half weeks I was in hospital. One was to give me a nebuliser thing, which is very unpleasant, and he had to get out of the room as quickly as possible apparently because it would affect him. And one more time and that's all I saw of him. And I never saw him afterwards. So, it wasn't great but. 

Most people were treated in the NHS but some had aspects of their diagnosis or treatment privately either to avoid long waits or to obtain drugs not available on the NHS. One said that he wasn't treated privately because he was told the private sector did not have the skills to treat lymphoma whereas his local NHS hospital was a centre of excellence. Those who had experienced both the NHS and the private sector said the main differences were in the speed of referral and investigations, in the hospital environment and in the availability of private rooms.

 

Initially used private health insurance to avoid a long wait: his private and NHS care differed...

Initially used private health insurance to avoid a long wait: his private and NHS care differed...

Age at interview: 43
Sex: Male
Age at diagnosis: 38
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes but I was, the company I work for I had private health insurance so clearly that explains the speed of my treatment. I think the most worrying thing in hindsight is that I went to have, I was referred for a tonsil problem to an ear, nose and throat specialist, because my company pays for my private health I saw them two weeks later. Now if I'd have been not in that position I guess an ear, nose and throat appointment in most NHS hospitals is probably a twelve month wait I would guess, I don't know, it might be six months, it might be eighteen months, but it's a long wait and I would've been on that waiting list to see someone about an ear, nose, an ear nose and throat problem, and that's quite scary. So I don't know how you get your head round that really, I was just lucky I think because I don't know how far, if there'd have been any different outcomes had I had to wait another twelve months.

So did you have all your treatment privately or were you NHS?

No, no the first, the tonsils were taken out privately, the first eighteen weeks or six treatments every three weeks was private, the, everything from there in London was NHS and it was, and the quality of the attention that I got from the specialists and the quality of the specialists, the way they dealt with you, they were both fantastic and there wasn't one bit of difference. The only difference was the physical, the hospitals, the difference between the private hospital and an NHS hospital was substantial. But the actual treatment that I received was first class from private and NHS and the specialists themselves were brilliant with me and I really have got nothing other than enormous gratitude and praise really for them and everyone that dealt with me in the NHS system and the private system. 

So the differences you're talking about are in the kind of hospital environment?

Hospital environment

The plushness of the rooms and...?

The money that the private hospitals have got compared with the NHS. The rooms are totally, the rooms, the attention to detail that, you know, because the number of staff that are available I guess, all these sorts of things is all, it's all financial. And I, looking back, in my opinion the, I don't know what the budgets are for the hospitals because I am just thankful that the NHS gave me the treatment that they did and it was fantastic and it was quick and I went in January for the first time to see the specialist in London and by March, the end of March admittedly, but by two months later I was being admitted and having my treatment.

Some people had been offered counselling and most found it useful to deal with their feelings, in particular to help them accept the illness, to be given permission to feel unhappy, to realise they weren't alone, and to deal with feelings of abandonment on being discharged from hospital. Not everyone got on well with their counsellor. Some people saw themselves as 'copers' and felt they did not need counselling. A man who said he had been too proud to take up the offer, believing he could cope with his feelings, suffered personality changes which ultimately wrecked his marriage. With hindsight he believes he should have had counselling. Another said that he hadn't been offered counselling, and although he knew where to get it he didn't feel able to ask for it.

Few people talked about having contact with their GP once they were under specialist care. Some suspected that their GP did not know much about their illness, but one woman's GP practice seemed to have made the effort to learn more about her condition over time and she developed a good relationship with them. Another woman praised the good communication between her hospital and GP, who met her regularly throughout her treatment to find out how she was and helped her to manage getting back to work.

Many people we talked to stressed the importance of good communication and of health professionals remembering that we are all human beings 'not just patients'.

Last reviewed February 2016.


Donate to healthtalk.org
donate
Previous Page
Next Page