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.

Her GP is willing to discuss new treatments and she thinks it is important to keep him informed…

Age at interview 29

Gender Female

Age at diagnosis 23

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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.

Explains that he no longer goes to the doctor about his pain.

Age at interview 66

Gender Male

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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.

Advises people to make notes and book a double appointment with their GP if they have a lot to…

Age at interview 59

Gender Female

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Used to get upset with her doctor’s but now makes an effort to explain how pain is affecting her…

Age at interview 52

Gender Female

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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.

Feels that people from her generation are over tolerant and need to learn to ask for help.

Age at interview 73

Gender Female

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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.

Feels that sometimes health professionals only see her as a shoulder problem not a whole person.

Age at interview 63

Gender Female

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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.

Thinks that doctors forget that people might not understand what they are saying and sometimes…

Age at interview 50

Gender Female

Age at diagnosis 45

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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.

Saw two different consultants one who said nothing could be done and another with a more holistic…

Age at interview 42

Gender Female

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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.

Was referred to a psychiatrist and felt disbelieved but now realises that counselling can help.

Age at interview 56

Gender Female

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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’.

When she went to a pain management clinic she was a relieved to be told that they believed her pain.

Age at interview 32

Gender Female

Age at diagnosis 26

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Financial effects of chronic pain

Many of the people we talked to had found it difficult to continue work because of their pain. Expectations and plans often had to be...