Communicating with healthcare professionals about chronic pain
Most of the people that we talked to felt that a good relationship with their GP was crucial and many said that their GPs were supportive, enthusiastic and took a genuine interest in their pain. People valued GPs who gave them their full attention, listened to and understood how pain was affecting their life, made helpful suggestions for treatment and referred them when necessary.
Some felt that it was important to work in partnership with their doctor to find the most effective ways of managing their pain. Good partnerships were felt to be ones where they could discuss their current and possible treatments as well as complementary approaches that they had heard about.
It was particularly helpful when the GP followed up on this and found out more information. A woman explained that her GP was happy to discuss new treatments with her and felt it was important to keep him informed about the complementary approaches that she was trying.
- Age at interview:
- Age at diagnosis:
- Not working/voluntary work for Fibromyalgia Association; single.
I've got a very good GP now, I have got a GP who actually knows what fibromyalgia is, he's prepared just to sit and listen, he listens a lot, he'll let me try new medications, obviously because of my science background I probably know more about fibromyalgia than he does because I read so much in research papers, but he's very willing to let me be a guinea pig and to work with me, which I think is important with a doctor/patient relationship, you've got to work on this path of chronic pain together.
But you've also got to be very honest with your doctor, you can't just go out and start trying a new treatment without telling him, because then he can't monitor what's going on. My doctor likes to monitor what my drugs are doing, and if I want to start a new therapy I will go and tell him, I am going to start this now, and then we'll discuss it and decide is this actually working, is it actually making any difference, so we can see if I'm wasting my money or not, but also I think you have to appreciate with your doctor what he can do and what he can't do.
Like he cannot take your pain away, so there's no point in keep going to him and say 'Oh I'm still in this pain', there's nothing that he can specifically do, you have to accept his limits. Like he can refer you to a physiotherapist, he can refer you to occupational therapy, he can help you with...
So if I want a specific referral, I'll go and say I need to see a physiotherapist at the moment and he'll just do the referral or I think I need a bit more of this drug, can we just try it, rather than just experimenting on your own, which actually might be dangerous, because the interactions with the different drugs, he's there to point me in the right direction so we work together and it works really well. But I don't bother him all the time with things I know he can't solve, because that is where the frustration gets in, yes it works well.
Some felt that they probably knew more about their condition and how to manage it than the doctor. A man said the last time he went to the doctor with a flare-up of pain, his GP asked him, “What should we do?” Like several others he explained that he now rarely bothers to see his GP about pain.
- Age at interview:
- Retired university teacher and author; married; 3 children.
One thing I don't do is go to the doctor ever about the pain. Because the last one, when I had a seize up and he looked at me and said "What do you think we ought to do now [CP30]?" and then he said "I'll come and see you in a week". And I said "don't bother I'll come and see you". "How?". "I'll find a way".
And so I did I went to see him in a week and he said "How did you do it?" And I'd gone back to first principles with exercise, relaxation building up just, just enough to get back to say I managed to get here! But I don't seek medical help for pain. I wouldn't, wouldn't even think about it now. It's, it's sort of not in my vocabulary. I think there's much more to be done with using the pain management principles.
Not all people felt that their GPs had been supportive. The main criticisms were a lack of time to talk about their problems and a feeling that the GP was not a specialist or had no interest in chronic pain. A few felt frustrated that they had not been told about specialist pain services sooner.
A man told us that he had once stopped what he was saying because his GP was working on the computer while he was talking and he wanted her full attention. Another complained that his GP kept advising him to stop smoking and didn't seem to listen to the reasons why this was not the right time for him to try to give up. He compared the 'cold' and 'mechanical' approach of modern GPs with the warm relationship with his family doctor when he was growing up.
Sometimes people felt like “heart sink” patients or said they could see their doctor cringe when they walked through the door. One woman explained that her GP had got to the end of his tether but she was not surprised when she looked through her own 'Yellow Page directory' sized medical notes and realised it was difficult to make sense of her condition.
A few people said that they had changed GP because they felt it was important to find someone that they could get on with. However, one man warned people against 'doctor shopping' or looking for someone who could cure the pain, which he said was unlikely.
Some had stuck with their GP although one woman said she had taken a long time to get through to her doctor. Others recommended being proactive and not being scared to ask questions or explain how pain affects your life.
A woman found it useful to write herself notes and book a double appointment if she had a lot to discuss. Another explained that in the past she had got upset with her doctor and stormed out but now tries to put herself in his shoes and makes an effort to explain exactly how the pain is affecting her.
- Age at interview:
- Retired airline customer service representative; single.
What advice would you have for somebody going to their GP and asking for help?
Is, the advice I would have is before you go perhaps make a few notes about how you really, really, feel. And perhaps even in the beginning when they are speaking to them ask the doctor 'Do you specialise in pain?' Or, you know, approach it, you know, be quite, go right into it and say 'Have you, you know, are you familiar with people who have a lot of pain or have you any expertise in that area, because I really feel that it's debilitating me in my, in my everyday life and I think I need help.
How to deal with it and I know there are pain support groups, but on a practical level I may need some different kind of help and I was wondering if you have any other suggestions.' But be strong.
But I think writing it down, because you know what else just irritates me and I know they have to do it and I know everyone's under a time constraint is when you go to the doctor and that, people are typing into a computer and you don't know whether to stop saying what you're saying or ask them. I think it's better to stop when they are typing. That's what I would do now. I just stop, stop speaking. In other words, stop telling them what's bothering you and then hopefully they, so that you have their undivided attention, I think it's very important.
And perhaps before you go to the GP, before you see the GP, you might have to ask for a 20 minute appointment, you know, and if the receptionist or whatever goes 'What do you mean a 20 minute appointment' You say 'I have some discussion with the doctor and I don't want to, it disrupt the whole patient schedule'. That's the biggest, it's the time. So ask for the time and make sure that you get your what's wrong over to him or her and ask for their help.
- Age at interview:
- Unemployed receptionist; single.
I have been known to you know, storm out, be you know, what's the word, a difficult patient because I'm frustrated. You know, if you feel you're not being listened to, it's frustrating, really frustrating. But now I realise that it's better for me to understand them not understanding me so that I can get my point across, if that makes any sense to you.
So if I go to a GP and I'm not being understood or I'm not being... I put myself in their shoes, thinking 'Okay here comes another one' you know, or whatever, whatever they don't know about chronic pain, I'll try and be different and say 'Well actually it...' you know, and go overboard to try and make them understand a little more of what my situation is like.
Instead of acting out on my frustration that's just going to, that's not going to get me anywhere. So I'll make an extra effort to, to give them an idea of what it's like to you know, walk in my shoes. Especially since I worked for GPs so I understand what it's like for them.
I know that they've got seven minutes and about, you know, eighteen more difficult patients to deal with, so they hardly need me bursting into tears or storming out in anger, you know, frustration. So I, I've learned over a period of time to you know, be more patient with the doctors.
An older woman said that her generation had not been brought up to be vocal and were perhaps over tolerant and needed to learn to ask for help and support. Others said that the days are gone when people just accepted what the doctor says; now it is important to ask questions and tell them when things are not working.
- Age at interview:
- Retired health visitor; divorced; 3 children.
You say that you're tolerant. Do you think that's affected the way you've perhaps not asked for help when you've needed it?
You know I think you can be too tolerant because you put up with things. If you're too tolerant, you put up with things that perhaps you shouldn't put up with and that perhaps a lot of other people wouldn't put up with, wouldn't bear. So you just get on with things rather than asking for help.
I don't know what it is, it's... we never do the right thing do we? We either demand too much, or we do not demand enough, criticised if we ask for too much and we perhaps suffer if we don't ask loudly enough. Because we can't expect other people to stand up for, and shout on our behalf, so we've got to shout for ourselves. But our generation are not used to doing that. We weren't brought up to be vocal. We weren't brought up to be, to complain. We were brought up to think you were lucky to have what you've got, make the best of it. And I think most of us do.
What advice would you have to maybe another older person who is suffering from pain?
Keep as mobile as you can. Don't give into it. Don't let it beat you but ask for help. Ask things, ask what is available. Demand to know, if you like, but certainly find out what's there, find out what's there on offer, find out what there is, find out what you need. Know what you need and, if it's not there, try to find somebody who can find it for you.
People had often been referred to specialists in the search to find a cause and possible treatment for their pain (see also 'Search for a cause and diagnosis'). There were frequently long waits for these appointments and they could feel very rushed with little time to ask questions.
Several people commented that it could feel like the doctor focussed on the part of the body that was in pain and not on how pain was affecting them as a person. The language that the doctors used was sometimes confusing.
- Age at interview:
- Secretary; widowed; 2 children.
Yes. I think it's mainly because people, professionals, you know, if they look after a certain part of your anatomy, say your shoulders or they just tend to think of that as the problem with you, they don't tend to look at you as a whole person. And I always try to explain even earlier this week to a professional about the pain and they said that they weren't interested in that part of it.
They were only interested in the bit that they were interested in as though I was, you know, I could be chopped up as this is, you know, as though all parts of your body weren't related. And I think that that's where the professionals have got to look at people as people not as just a heart, or a shoulder, or a knee but as people with lots of different needs not just the one. So it just blinds them to the fact.
You know I often wonder if they just see a picture of your problem in front of them, you know not me as a whole person but say perhaps you know the shoulder person just sees a shoulder sitting in front of them or the knee person just sees a knee person sitting in front of them, you know and the same from the other side, the mental side, they tend to look on you know just the mental side and not the physical side. Which can sometimes be quite distressing because you are a whole person.
A woman wondered if doctors sometimes don't realise when a patient does not understand and said she would often ask doctors to explain things in plain language. Others had been pleasantly surprised that the doctor had taken time to ask questions and give them detailed and easy to understand explanations about their condition and treatments.
- Age at interview:
- Age at diagnosis:
- Medically retired care officer; married; 3 children.
Well as I say communication is one of the main things that you've got to do. But if you don't know what's wrong with you, and the doctors don't know what's wrong with you, and the professors don't know what's wrong with you, and this one doesn't know what's wrong with you, it can be very hard to communicate.
Because the simple thing is doctors aren't too bad but surgeons and professors and all the rest of it in the hospitals and all that, they've got a language all of their own and they forget, they went to school for what 6 years to learn all these fancy words but we don't know what they are.
So communicating with somebody, like a professional, like a professor or a doctor or whatever, they know the medical names for them, we don't. So you've actually got to say 'Excuse me, go on and say that in plain English', because you would need to have one of these medical dictionaries and you would be there all week trying to figure out what the one word was that he said, so you've actually got to say to them look 'I don't understand what you're saying'.
He might understand what he's saying but you don't so you've got to say to him 'Look you have to explain it to me, in my language not yours', and that can be quite, because an awful lot of surgeons and professors can be quite look down their noses at you kind of thing. 'You're supposed to do as I tell you, what it used to be years ago', you didn't answer the doctor back, you didn't do this and you didn't do that, you did what you're were told.
Whereas now you seem to be more open, you can actually say to them 'No I don't agree with you', without being a very bad person, do you know what I mean?. Whereas years ago you don't answer the doctor back, what ever he says is wrong with you that's it, you've got to live with it. But you don't now, it's a case of you have to ask them to tell you what's wrong with you in your own, in your language not theirs.
Often a specialist had to give them the disappointing news that there was nothing that could be done to totally relieve their pain and that they would have to learn to live with it. Sometimes people felt that this had been done in a very abrupt way and said they left feeling let down and hopeless.
One woman felt that professionals varied and that those that took an holistic approach were more likely to offer solutions for managing the pain.
- Age at interview:
- Pensions administrator; married; 2 children.
You saw a couple of consultants that you've talked about. Am I right in thinking that you had not a really good time with those consultants?
My GP had referred me on to one consultant initially who, when he examined me, basically said 'Well there's nothing I can do for you' and sent me away, and I left the hospital in tears, because, you know, once again it was just hitting a brick wall.
You were just were so desperate for somebody to do something and when somebody says 'Nothing I can do' it's absolutely devastating. One of the nurses actually caught me on the way out and found me crying and had informed the consultant that he'd obviously upset me and he contacted me at home very nicely and invited me back for a further consultation to discuss the matter further.
And I went along with my husband this time, just for moral support, and that was when I was told 'Well, it's really just old age. Again there's really not much we can do about it, you've just, your back has got older quicker than the rest of you'.
And at 33 at that time, I sort of said 'Well, why is that so'. 'Well, why do some people go bald and others don't? Why do some people get grey hair and others don't? Its just luck of the draw.' And I was actually told that things would probably get worse during my forties and then better in my fifties, but I hope that's not going to be the case.
You then said you were sent to see another consultant
Who told you about pain management. How did you feel to find out about that?
When I was referred to a second consultant the reason that I was referred to him was because he had a slightly different outlook to the first consultant I saw. The first consultant was really very highly regarded for his success in operating on backs and he obviously felt I wasn't a candidate for it.
The second consultant had a much more sort of holistic approach to pain and I believe he also did acupuncture, although I never actually got acupuncture from him, but it was he who sort of came up with the idea of going on the pain management course.
Several people discussed feeling that healthcare professionals didn't believe them, or made out that the pain was “in their head”. People could often feel this way when tests continually came back negative and there seemed to be no physical cause for their pain.
Sometimes people were worried that a referred to a psychologist or psychiatrist meant that their doctor thought that the pain was psychological rather than physical. One woman felt that her credibility was being questioned but later discovered that pain and emotions go hand in hand, and that a referral for counselling can be helpful.
- Age at interview:
- Retired careers officer; married; 2 children.
When you are referred to a psychiatrist for a physical problem it is very upsetting and distressing basically. Because you feel that your credibility is being questioned. Now I know that a referral like that may be made in very good faith and with your best interests at heart, but I think it needs to be done in a very sensitive way and this wasn't done for me.
I was given that referral basically as a punishment rather than an aid. And I know people with chronic pain almost inevitably become depressed and anxious and angry, I would think that you would always be abnormal not to become depressed if you have chronic pain for any length of time.
So you're very vulnerable to any sort of implication that you may have a psychiatric or psychological problem rather than a pain problem. And it wasn't explained to me at the time that actually the two probably go hand in hand and it is often said about chronic pain that the strain in pain lies mainly in the brain, because you experience pain through your brain, it is an emotional experience as well as a physical experience.
But my referral was done in a very heavy handed way and I felt very angry and anxious and very defensive because I felt that primarily I had a physical problem why was I being treated like this, so I think if people are going to have those sort of referrals and they may be very suitable for them and appropriate.
A great deal of time needs to be spent by the referring health professional to explain to chronic pain patients that depression, anxiety are very much part of this syndrome and that they haven't failed in any way, that they are not disbelieved in any way, that it is felt that this is part of the treatment in a very genuine way.
She felt that it was the responsibility of the person making the referral to explain and reassure people that their pain is not purely psychological. Sometimes the most helpful thing to hear from a health professional was “we believe your pain”.
- Age at interview:
- Age at diagnosis:
- Administrator (trained as nurse); single.
But I was lucky because at that clinic appointment they then said 'Would you like to be referred to the pain management team' and I said 'Yes please'. The first time I went to the pain management clinic, they were asking me about my pain, how it affects you, what it's like and you tell them and these people they sit there and they actually a) they listen to you, but b) they don't question you.
When you go to, when I was going to the specialist before my surgery, everything is questioned. You know, 'First of all you said your pain was like this, and now you're saying it's like this' and 'What do you mean?' and you almost feel that they're trying to tell you, 'You don't really have pain and you don't know what you're talking about'.
But as I say, you go to a pain management clinic and it's like 'Okay you are telling the truth and we believe you' and it makes a huge difference actually, having somebody who will believe you, without questioning it. Because you go through, you go through virtually everybody questioning you and wondering if you're telling the truth or not.
Last reviewed August 2018.