Challenging conversations about your cancer care
If you feel that your healthcare or treatment needs have not been met, the next step is to have a conversation with your healthcare professional to highlight the gap in your care. This could be with your cancer nurse.
This conversation will hopefully go well, and your healthcare professional will note down and take forward your concerns. However, there may be some instances where the conversation could be a challenging one.
You might worry about being labelled ‘difficult’. You may also feel there is a power imbalance because you lack specialist knowledge, or you might feel that unconscious bias is present.
Unconscious bias is when people hold stereotypes about certain groups of people that are formed outside their own conscious awareness. Unconscious bias might affect the way someone communicates with or treats another person.
If it goes well, you will leave a consultation with your healthcare professional feeling satisfied with the care you’ve received, but there may be occasions when you don’t feel happy with how it went. These reasons can include:
- You haven’t fully understood the information that has been given to you
- You don’t feel you have been properly heard
- You don’t feel your questions have been answered
- You have concerns that your worries weren’t taken seriously
- You have concerns that the doctor or nurse didn’t communicate effectively, or even politely.
Understandably, if you experience any of these feelings and concerns it can be an upsetting situation to find yourself in, but there are ways to address this. The first step is understanding how you can make the most out of each consultation you have.
Preparing for your consultation
Here are some tips to help you make the most out of each consultation.
- Preparation can be helpful – do you have specific questions you want answered? If so, write them down so you don’t forget.
- Be aware that an appointment may be time-limited – the doctor or nurse may feel the pressure of that as much as you do. If you don’t feel you have had long enough, flag this and ask if a follow-up appointment or call can be organised.
- If you haven’t had all your questions answered, raise this concern – ask if there’s another way to ask questions that’s easier for you to understand. For example, could you agree with your doctor to email the questions in?
- If you feel that you aren’t being heard, try to voice this – the doctor may not be aware of how you are feeling.
You may feel that your doctor or nurse is not giving you the chance to explain how you feel or they have been dismissive of your concerns. If so, it's okay to move on to the next steps outlined in this toolkit.
However, do remember that we all have pressures affecting our day and there could be a number of reasons why a consultation has not gone well.
Feedback is always helpful for healthcare professionals and you can feedback both positive and negative issues via PALS or Primary Care.
The NHS has more information on giving feedback on your care.
Before the conversation
Top tip: If English is not your first language, you can ask for an interpreter to attend appointments with you.
- Prepare yourself by finding out as much information as you can. This will help you play an active role in decision-making and feel empowered.
- Be clear about what you want to achieve from the conversation.
- Talk through what you want to say with a friend, family member or carer beforehand, until you feel confident.
- Think about the assumptions you are making about the practitioners’ intentions. You may worry about feeling intimidated, ignored, disrespected, or marginalized, but be cautious about assuming that this is their intention.
- Consider if your attitude towards the conversation is influencing how it might go. If you think this is going to be horribly difficult, it probably will be. If you believe that whatever happens, some good will come of it, that will likely be the case.
During the conversation
- Be confident and believe in your ability to bring about change – this is about you and your health.
- Take someone with you if it helps, but not to speak for you unless you have agreed this beforehand.
- See yourself as an equal. Remember the person across the desk from you is human too and try to understand their perspective. Acknowledge the expertise of the practitioner, but remember you are an expert in your own experience.
- Make notes or ask the person with you to do so and always ask ‘why’ until you understand.
- Check out Macmillan’s top tips for talking to your healthcare professional team.
After the conversation
- Follow up the conversation with an email or letter setting out your understanding of what was decided, if you are able.
- If you did not achieve what you wanted to, there are other options on what to do next in the next stages of this toolkit.
We recognise that it may be tough to have these challenging conversations with healthcare professionals. Or you may find they are not open to having a conversation.
Writing a letter to your healthcare professional detailing your concerns could be a next step if the conversation doesn’t go well, as a way to escalate your voice further and have a formal record of your concerns which will go on your file.
After the conversation, you may not feel you achieved what you wanted to. You might feel you are still being treated unfairly on the basis of your identity. If so, there is more you can do.
Patient Advice and Liaison Services (PALS)
Your local Patient Advice and Liaison Services (PALS) will help you to informally resolve issues with a hospital before making complaints. PALS can be very effective if your issue is urgent and about your treatment. If they can’t help you, they will explain the hospital’s or trust’s complaints process to you and who can help you with your complaint.
NHS Complaints Advocacy
You might find it helpful to have someone to help you make your complaint. This person is called an advocate. Find out more about the independent NHS complaints advocacy service by VoiceAbility.
Find your local Healthwatch to share your experiences of health and social care. They use the recommendations they receive to shape future services in the area. They can also help you make a complaint about the NHS.
‘I always remind myself that I have a responsibility to know as much as possible. I try not to forget that the practitioner I am meeting with is also a person too who might be busy, stressed or unsure and not intentionally being difficult.’ – David
‘In so many areas of my life, I feel confident to assert myself and put my own views forward. Unfortunately, when it comes to meetings with my GP, I feel cowed and uncertain even before I enter the consultation room. Even though I know much about my condition and the range of treatments, I feel that as a Black woman this will be perceived as my being aggressive and pushy and therefore, I feel silenced.’ – Judith
‘There is no doubt that as a young person I have often felt patronised and not taken seriously when dealing with health professionals – being talked at rather than with. I know a lot of people who feel the same way as me. It takes a lot of effort for me to ask questions and question someone’s opinion and I don’t feel I do it well and it leaves me feeling anxious and tired afterwards.’ – Tawanda