Talking to healthcare staff

 ‘My wife’s Macmillan nurse genuinely made me feel that no time was the wrong time with her, that no question was the wrong question.’

Here are some tips to help you in conversations with healthcare staff:

• Ask doctors or nurses to use simple language and explain medical terms If they use words you don’t understand, ask them to explain them. Sometimes they forget that you’re not as familiar with medical terms as they are.
• Use your own language Although your doctors or nurses may use medical terms, you don’t have to. It’s okay to use your own words to describe the problem. In fact, using terms that you only partly understand might cause problems as the health professionals may think you know more than you do.
• Say if you’re embarrassed We all find certain kinds of medical symptoms and problems embarrassing and they’re often the kind of personal matter we don’t want to talk about with someone else. So when you start talking about something that’s embarrassing, you can just say something like, ‘I’m sorry ... this is embarrassing to talk about, but …’.

Talking about your symptoms Back to top

You’ll often have to describe your symptoms, for example pain|, nausea|, breathlessness| or some other medical problem. It’s also important to talk about your feelings and any symptoms of depression| or anxiety| you have. This may be difficult but it’s important to let people know how you feel.

Try to be as factual and open as you can when describing your problem. Sometimes it’s tempting to exaggerate symptoms to try to get treatment more quickly from the doctor. Or there may be a temptation to play down the symptoms to appear strong or brave. If possible, try to describe the problems in an honest, factual way. This may not be easy but it will give your doctor a better understanding of your situation so they can help you in the best way.

Asking for information Back to top

Your feelings and fears may make it difficult for you to ask your medical team the right questions and to remember their answers. It can be useful to:

• Try to think of the most important questions before you meet with your doctor.
• Write down the important points on a piece of paper that you can take with you Every healthcare professional knows how difficult it is to understand and remember information, particularly when it’s serious and when it’s about you. Nobody will mind you writing things down or making a list of questions you want to ask. Some people are happy for you to record the discussion, so that you can listen to it later. You can also ask your medical team for a copy of any letters summarising the details of your discussion with them.
• Take a friend or relative with you to appointments They can help you remember things that the doctor says, and questions you want to ask but might forget.
• Make sure you understand Once your doctor or nurse has answered your questions, it’s a good idea to summarise their answers and say something like, ‘So you’re saying that …’ or, ‘If I’ve got that right, you mean that ...’. This makes it clear what you’ve understood, and can encourage your doctor or nurse to explain things more clearly if necessary.
• Ask for simpler explanations If you don’t understand what you’re told, it’s fine to ask the person to explain again more simply.
• Remember, you’ll have other chances to ask questions You can always make another appointment to ask your questions if you don’t cover everything in the first discussion, or if you’re given surprising news that changes the questions you wanted to ask. You may also be given a phone number for a nurse specialist you can phone if you’ve forgotten to ask a question or if you don’t understand something.

Dealing with uncertainty Back to top

Definite answers aren’t always possible so you may have to accept that uncertainties are common, especially with questions about the future. When the conversation is about things that threaten your health or your view of the future, you might think that your doctor or nurse knows what’s going to happen but won’t tell you. Usually, that isn’t the case.

There is usually a lot of uncertainty with cancer treatment. Your doctors and nurses won’t always be able to tell you exactly what will happen to you. For example, if a treatment has a 40% chance of success (and therefore a 60% chance of not working) there is often no way of knowing if you’ll be in the 40% group or not. It may help you to cope better if you can understand how your progress will be measured. For example, you can say, ‘So you’ll decide from the x-rays if the treatment is working?’

If you’re unhappy with the care you receive from your healthcare team, try to talk about your worries with them as sensitively as you can. If you can say what you’re unhappy with and how it affects you, they can hopefully change the situation so that it gets better.