Support from health care professionals
While the primary task of health professionals is to deal with people's medical needs, treating people rather than diseases requires attention to emotional as well as physical needs. It is also important to identify gaps in support that may occur as people's needs change through their cancer experience and they move between primary and secondary care. Poor communication between hospitals and GPs often makes it difficult for GPs and others who provide support in the community to know when and what kind of support might be needed.
Simple acts of kindness on the part of health professionals often had a powerful impact on people's emotional state and ability to cope with their illness. A woman explains how it helped her when a nurse offered to hold her hand. Another woman who became depressed in hospital was moved when a nurse took the time to wash her legs and feet. The warmth and approachability of a GP and surgeon made a third woman feel especially well looked after.
She explains why she appreciated a nurse offering to hold her hand.
Hmm. That helps does it?
Yeah, I think really and truly this was the biggest thing I missed when you know, when my husband died that um, well you didn't have contact, or you didn't have anybody to sort of give you a hug, like not, I mean my daughter did, like little ones. But not like your husband sort of sitting and saying well you know "Well don't worry love, it'll be alright", you know, blah, blah, blah.
You just, so you had to really a lot of the time put on this front if you're that way. I mean I know some people can't do it because they just can't, it's not, they're not that sort of people and, but as I say it goes back to I can't bear people feeling sorry for me or pitying me.
No, but you found it helpful when the nurses would hold your hand?
Oh yes, and they was nice to you without being over the top you know.
A simple act of kindness on the part of a nurse helped her at a difficult time in hospital.
But there really wasn't the time to, certainly wasn't the time to speak to nurses about um how you were feeling emotionally, I didn't feel it was fair. And nobody sat by my bed and, and asked me, they, they really did not have the time at all and I was only aware of one other person in the ward having cancer and he was quite a young boy, well he was very young, he was my son's age and I did talk to him, we were at opposite ends of the ward.
But I was moved fairly quickly to the, another one and there was nobody in that ward with cancer so I couldn't really even talk to another patient about it.
So really, I just remember one nurse who had come over from South Africa for three months and she was really the only one that I felt at the time showed me really great kindness. She actually washed my legs and my feet, which was wonderful and just that very simple human touch and that very simple kindness of doing that made me feel so much better.
Her GP and surgeon were very approachable and this meant a lot to her.
As I say it's like I go to the doctors and they're not doctors to me, they're friends, right from the surgeon down. The surgeon, he's from Glasgow and he's the top man in Britain for bowel cancer which I was lucky to have, and he jokes about things, he, his wife was into hospital just after I had my operation and I mean you didn't ask what had happened but he told us, he had to cancel because his wife was rushed into hospital. But it turns out she had a wee baby girl and when you say "How's your wee daughter getting on!" "Women. That's two women I have to fight against now!" and he jokes about things.
I mean he does not go in, some of these surgeons when they come through the wards could hardly speak, but he jokes and he tells you anything you want to know. You just have to say "Could you tell me?" and he'll be honest with you.
Macmillan Nurses and specialist stoma care nurses were highly regarded. Many people appreciated the combination of practical and emotional support that both groups of nurses routinely offered.
GP support after treatment for cancer was a difficulty for many people and it was sometimes difficult for GPs to strike the right balance. One young woman who experienced a delayed diagnosis felt that, after treatment for cancer, her GP was over-reacting to any sign of illness. Other people felt their GPs were indifferent or unprepared to deal with cancer patients.
She feels her GP over-reacts now that she has had cancer.
And as I say as I was having these migraines last year and I went to the GP and she said "Look I know you're going to be worried about it so the best thing for you to do is for me to refer you to an oncologist and they'll see if there's anything wrong, if you've got a tumour in your brain or whatever."
So that's what happened so I ended up having a CT scan and of course everything was okay. I mean understandably you're under a great amount of stress so of course you're going to get migraines, it's going to come out in one form or another.
So I do find that overkill, I think it makes me more anxious than is necessary and yes I can appreciate why GPs react like that now because they don't want to miss anything. They're trying to I suppose relieve any anxiety I've got but at the same time I think it would be more helpful if they just said "Look you've got a migraine you know you haven't got a brain tumour," without putting me through all this extra stress of going to see you know an oncologist again, of having a brain scan. All these things are stress that I don't think I actually really need. So I think I do get, that's slightly frustrating.
A woman who had become so severely constipated after surgery that she had to be re-admitted to hospital was advised by her GP to 'drink some cold water'. A man who had a temporary colostomy was told by his GP that organising stoma care support was not his responsibility.
Another man felt his GP was indifferent to his needs and shocked when he suggested he could go back to work four weeks after major surgery even though his job involved heavy lifting. He explains how he changed GPs and the difference between the old and new one. Several people said their GP admitted to knowing little or nothing about aftercare for bowel (colorectal) cancer patients or the needs of people undergoing chemotherapy.
His GP was indifferent to his needs after treatment for cancer so he changed to another, much...
He never once got out of his chair to examine me or nothing, to even look at me scar or nothing. In fact it got to the stage, before I left him, it got to the stage where he was saying "Oh you can go back to work soon" and I hadn't been, this was about a month along the line, this was.
And in newsagents you're picking up heavy weight, you know papers stacked together, you're picking up weights all the time, and I thought, this is not on, I can't do this like you know.
So the following day I went and changed my doctor and he was completely different. He, every time I've seen him he examines me, he asks questions about different things. When I'd been, you know through other illnesses that have come up, he's always asked me, referred to me what's its, reports on me cards.
And it's got to the stage now where I, instead of going to the hospital for water and blood tests now, they've asked me to see me doctor and he does it for me which you know, which, which, they said "Have you got any," you know "what's it's against your doctor?" I said "Me doctor's alright," I said "I can trust my doctor a hundred per cent" like you know. And they said "Do you mind him doing all these blood and water tests?" I says "No."
We went away on holiday last year and I was a bit worried going abroad for the first time like you know, and I asked advice off my doctor then and he gave me a thorough examination before I went away.
He said "There's no problem at all," he said "you go away and enjoy yourself." And, and that's, that's really all you want, you know, is somebody who's examined you, you feel a lot better you know, instead of somebody just sitting there writing things out for you, because you're just wasting your time really I think you know, if you do that.
People who had good GP support after treatment for cancer felt that this greatly aided them in their recovery and helped them regain confidence in their health.
Support for patients between diagnosis and treatment was also a difficult area. One woman explains how she spent the weekend after receiving her diagnosis on a Friday. She also argues the need for better community aftercare once people leave hospital.
She emphasises the need for support after a diagnosis.
Uh, and we were going out on the Sunday to a birthday party at a friend's house and I spent the whole time upstairs with the children, it still makes me upset about it, looking at my son. It was uh, that was the worst weekend of my life.
It's, it's really important I think that doctors understand that once you're diagnosed you need support to get, before you're operated on. And it can take several weeks and it's a very upsetting time for people, and it's the time when you probably do need support.
And you need to have the number of somebody you can ring like the specialist nurse, somebody you can contact if, if you're being distressed at that time, or you're finding it difficult to cope. It's just really helpful to find somebody to talk to at that period who can understand what you're going through and has maybe got some ways to help you through it.
She explains the need for follow-up support after treatment.
Just to have the phone number of somebody you can ring is very important um, because you are bound to have questions. And I had questions um, that I didn't put to anyone and I'm, they made me more worried. If I'd been able to talk to somebody right away uh, then I could have saved myself quite a few sleepless nights.
Uh, and I think that's why it's so great if you can get a specialist nurse or somebody whose, you've got a phone number of, if you've got worries you can clear them up right away just by ringing them and having a chat, because we all have worries.
And I think nurse-led clinics are a great thing because nurses tend to have more time to talk to you and are more reassuring. And so if you can find a nurse-led clinic that you can go to with your worries, I think this is a really good idea.
Some hospitals now will give you um, a coupon to fill in if you've got a, a problem or a symptom and then you can be in charge of your own follow-up.
Last reviewed August 2016.