Introduction
This learning resource provides information for people with serious mental illnesses about:
Preparing for cancer-related medical appointments
There are lots of health professionals involved in cancer care, and lots of different appointments you might attend related to cancer. For example:
-
Attending a cancer screening appointment
-
Speaking to your GP about a possible cancer symptom you are worried about
-
Getting results of tests
-
Discussing your treatment if you are diagnosed with cancer with a doctor, clinical specialist nurse, physiotherapist or other health professional
Many people with serious mental illness feel worried about speaking to health professionals, especially new or unfamiliar people. If you are diagnosed with cancer or are being treated for cancer, you might also find the number of appointments you need to attend or amount of information you are given feels overwhelming.
While everyone is different, many of the people with serious mental illness and lived experience of cancer who helped to produce this information said that preparing for appointments helped them to feel more in control. In the video below, Rime, a person with lived experience of cancer and serious mental illness, talks about some of their tips for feeling in control of cancer appointments.
Arranging the appointment on your terms
Whatever the reason for your appointment, it might feel like you don’t have much control over how the appointment takes place. For example, you might have had a letter telling you to attend a certain location at a certain time, or a phone call or text message offering you a time slot to book in.
Although sometimes communications from cancer services might seem quite blunt, there is often more flexibility around appointments than you would think. Some examples of this flexibility might include:
-
Booking longer appointments to give you time to have more detailed discussions or ask questions
-
Providing information in different formats (such as different languages or easier-to-read leaflets)
-
Making sure you can bring a friend or family to the appointment for support
-
Holding the appointment in a place that you feel more comfortable
-
Using your preferred method of communication (for example telephone or in-person)
Whenever you get offered an appointment you should be able to contact the service (via telephone or email) to ask them about ways they can make the appointment more comfortable for you. If you feel able to tell the service that you have a mental health condition, this may help the service tailor their appointment to you.
Preparation to get the most out of your appointment
There is often a lot to take in during a cancer appointment, and it can be easy to feel confused or uncertain about the information you receive. Doing some preparation might help you get the most out of your appointment.
People with serious mental illness and lived experience of cancer have told us some tips they have used to prepare for cancer appointments:
-
Research what might happen during the appointment. Trusted websites such as Macmillan can provide information about what to expect during different types of cancer appointments.
-
Expect uncertainty. Cancer is complicated. Sometimes appointments might not provide you with all the answers you are hoping for. Try not to focus too much on any one appointment being more important than others, and remember that you can speak to your cancer team outside of appointments.
-
Find a way of talking about your mental health condition that works for you. Most health professionals you speak to about cancer won’t be aware of your mental illness until you tell them. It is important that you make them aware of your mental health condition and what it means to you. This will help them to treat you in the best way possible.
-
Prepare notes in advance. Writing down what you want to say and what questions you might want to ask can be helpful to make sure you cover everything you want to. Macmillan have information on questions you might consider asking at different types of appointments.
-
Make use of friends and family. Friends and family can help you to talk through what might happen at the appointment. If you want to, you should usually also be able to bring someone to the appointment who can support you emotionally and also help by taking notes or doing other things for you.
-
Plan for the end of the appointment. It can be comforting to know what happens next. Before you leave the appointment, make sure you feel comfortable about what the next steps will be in terms of appointments or further communications, and when these will take place. Find out who you can speak to if you have any questions and how long it is likely to take them to respond.
In the video below, you can hear more top tips from patients preparing for appointments:
Talking about your mental health condition for the first time with an unfamiliar health professional might feel awkward or uncomfortable. Think about ways that you might prefer to get your message across. You might want to prepare using the “Why, What, How” structure in this learning resource, or by writing down a note with the information you would like your health professional to know and giving it to them. If you have several appointments coming up, you could even print out several copies of this key information to have ready.
Talking to unfamiliar health professionals about your mental health condition
There are many health professionals you could meet in relation to cancer. Telling them about your mental health condition is important, but it can feel challenging. You might sense that they are busy, think they will not be interested, or that they won’t understand about your illness. These should not be the case – cancer health professionals are now recognising that the best way to treat someone is in a way that reflects the deep connection between physical and mental health.
With the help of people with lived experience of cancer and serious mental illness, we have developed a conversation structure to help you communicate the key points of your mental health condition quickly and effectively to health professionals who you might be meeting for the first time. We call this “Why, What, How”:
-
Why: why you need to speak to the health professional
-
What: what you would like them to know about you and your mental health condition
-
How: how you would like to be treated by them
Preparing your “Why, What, How” conversation can help health professionals to begin to understand your mental health condition in only a few minutes. There is more detail on the things you might want to say in each part of the conversation below.
Your “Why” is your introduction. You should let the health professional know that you have a mental health condition and that you think it is relevant to how they treat you. How much detail you go into is up to you.
Examples:
-
“I have a mental health condition that I think will affect my treatment”
-
“I have schizophrenia and I think it is important you know a bit about how it affects me”
-
“I have depression and I’d like to tell you about it so we can plan how I am cared for”
Your “What” should cover all the key points about your mental health condition and wellbeing that you would like to put across. These could include how you are feeling, things that you are concerned about, your medications, how your mental health varies, or anything else that you feel is important.
Examples:
-
“My medication tends to make me quite forgetful”
-
“I often struggle to attend appointments”
-
“I feel very anxious about what will happen if I am diagnosed with cancer”
-
“I have periods of time where I don’t feel able to leave the house”
-
“I take [drug] which can make me very nauseous”
Your “How” should focus on what you would like the health professional to do next. You don’t need to have all the answers for how you will be treated – often you might want to suggest a conversation to discuss something in more depth.
Examples:
-
“I’d like to make sure that I get information face-to-face rather than via telephone calls if possible”
-
“I’d like to find out more information about the procedure before I decide if we go ahead”
-
“I’d like to talk about how we can make it easier for me to remember to take my medications”
-
“I’d like to make sure my mental health team are involved in any decisions about my medication”
-
“I’d like to have written information about the things we talk about”
-
“I’d like you to have a copy of my crisis plan in case my mental health gets worse”
You might want to prepare your “Why, What, How” plan in advance. If you’d prefer, you could also write the points down and give them to your health professional instead of saying your points out loud.
Below we’ve prepared a template which can be downloaded, filled in and printed out multiple times.