Introduction
This learning resource provides information for people with serious mental illness about cancer screening.
In this module you will find information about:
What cancer screening is and why it is important
Cancer screening means the regular testing of people to check if there are any early signs of some types of cancer present in their body. Almost all people will be invited to take part in screening at some point in their lives.
Screening tests are designed to pick up the early warning signs of cancer before the cancer causes you to feel ill, so it’s important not to dismiss screening tests just because you feel healthy. Most of the time, cancer screening will find that there are no early signs of cancer and the person can continue on as normal with their life.
However, if the screening does find a cancer, the person will be able to get treatment earlier than if they had waited until they felt unwell to see a doctor. This early treatment gives the best chance of treating the cancer effectively, increasing the chances of making a fast and full recovery.
It is important to remember that the aim of cancer screening is to find early cancers before you have any signs and symptoms. If you are concerned that you have signs or symptoms of cancer, do not wait to be invited to a cancer screening. You should contact your GP straight away.
Cancer screening saves thousands of lives across the UK each year. It is your choice whether you take part in cancer screening. If you have a serious mental illness, you might feel like you need extra support to take part in screening. This learning resource outlines some ways you can be supported during the screening process.
In the video below, Rime, a person with lived experience of both serious mental illness and cancer, talks about why she thinks cancer screening is important.
The cancer screening process and what you need to know
In England, there are three screening programmes for cancer:
| Screening programme | Who is eligible? | How often will you be invited to take part? |
|---|---|---|
| Bowel screening | Anyone aged between 60 and 74 years old, and people aged between 50 and 74 years old in some areas | About every two years |
| Breast screening | Women and some trans or non-binary people aged between 50 and 70 years old | About every three years |
| Cervical screening | Women and trans or non-binary people with a cervix between 25 and 64 years old | About every three years between the ages of 25 and 49, then about every five years until you are 64 |
If you’ve smoked and you are aged between 55 and 74 years old, you might also be offered a lung health check, depending on where you live.
These screening programmes all test for different types of cancer. The programmes are run to test for common cancers where there is a reliable method of spotting the disease early through testing people who are in higher-risk age groups. Many cancers do not have a reliable test which could be used for screening yet. The current cancer screening programmes in England are limited to people at higher risk of cancer because testing more widely might create more “false alarms” than real cases of cancer.
You can find out more about eligibility for screening and why not all cancers are included in screening programmes on the Cancer Research UK website.
What do I need to do to take part in screening?
If you are in one of the eligible groups for a screening programme, you should be invited to take part. Your invitation could be a letter or phone call. This will give you more information about the screening process.
You need to be registered with a GP to be invited to cancer screening. If you want to take part in screening but you aren’t registered with a GP, you can find out how to do so on the NHS website. You can also speak to your mental health team about support that they might be able to offer you to help you register with a GP or attend your appointments.
It is important to note that healthcare professionals involved in screening will not usually be aware of any mental health condition you have unless you tell them. However, they will treat you with respect and kindness, and may be able to offer additional support to you during the screening process.
What will happen during the screening process?
During the screening process, you will undergo some tests to look for signs of cancer. Different types of screening involve different tests and different processes to go through. You can click the headings below to understand more about what is involved in the different types of screening.
If you are eligible (aged over 50 years old), you will automatically receive a letter with a test kit to complete your bowel screening at home.
The test for bowel screening involves a small sample of your poo using a test called a “FIT Kit”. Your test kit will explain how to collect this sample of poo cleanly and easily. You will also receive a prepaid envelope to securely return the sample to the screening service.
About two weeks after you return the sample, you will receive a letter with your results. Most people will receive a letter saying that there is no further action required. Some people will be asked to repeat the test, and some people will be asked to attend a bowel screening centre for further tests.
You can find out more about bowel screening on the NHS website or in videos about the FIT Kit from the South East London Cancer Alliance, including translations to other languages.
Watch the video below to find out about the FIT Kit:
You will be invited to book a breast screening appointment by a letter or phone call if you are eligible (a woman aged between 50 and 70 years old). The appointment will be at a screening centre.
If you are trans or non-binary and were registered as female at birth, you may be eligible for breast screening. Please speak with your GP to check your eligibility and ensure you are invited.
During your appointment, nurses will take an x-ray of your breasts. This is called a mammogram.
The mammography process involves undressing from the waist up so that your breasts can be placed on the x-ray machine. You will be given a private area to change. One or two female mammographers will then guide you through the process of the x-ray itself. The machine can be uncomfortable as it squeezes your breasts slightly to keep them in place. However, the mammographers are trained to support you and make you feel as comfortable as possible. You can also ask to stop the process at any time.
Once the appointment is complete, you will receive a letter with your results. Most people will receive a letter saying that there is no further action required. Some people will be asked to return for further tests.
You can find out more about breast screening on the NHS website.
Watch the video below to find out more about the breast cancer screening process:
You will be invited to attend your appointment by a letter or phone call if you are eligible (a woman with a cervix between 25 and 64 years old). If you are trans or non-binary and were registered as female at birth, you may be eligible for cervical screening. Please speak with your GP to check your eligibility and ensure you are invited.
You may be given a choice of where to attend for your screening. This could be:
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A GP surgery
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A sexual health clinic
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A specialist cervical screening clinic
During your appointment, a small brush is used to collect some samples of cells from the surface of your cervix. This process is sometimes called a “smear test”.
To reach your cervix, a plastic instrument called a speculum is slid into your vagina. This helps the person completing the test to get a clear view of the cervix. This process can sometimes be uncomfortable. If you’re worried about the test being painful or experience pain during the screening appointment, the staff at the appointment will be able to help.
After the test is completed, you will receive a letter with your results after 2-6 weeks. Most people will not need any further action until their next test is due. Some people may be asked to return for more tests. If your test results show that a common virus called human papillomavirus (HPV) is present in your body, you might also be asked to come back to screening on a more regular basis (every year until the virus has cleared).
You can find out more about cervical screening on the NHS website.
Watch the video below to find out more about the cervical screening process:
If you have smoked in the past, you might be invited to a lung health check. Lung health checks are only available in some areas of England at the moment. If you’re worried about your lung health but you haven’t been invited to a lung health check, speak to your GP about how they can help.
If you’re invited to have a lung health check, you might be offered an initial appointment which takes place in person, online or over the phone. During this appointment, a health professional will ask you about your health and lifestyle to understand about your risks of lung cancer.
At the end of this appointment, you will either be told that you are at lower risk of developing cancer, or you might be referred for a follow-up appointment. If you still smoke, you can also have a conversation about stopping smoking and different aids available to help you quit through the NHS.
If you are referred for a follow-up appointment, you might have a scan of your lungs. This scan is a great way of spotting the early signs of cancer or finding other problems with your lungs earlier, which will enable early treatment, which can help to improve your outcomes
You can find out more about lung health checks on the NHS website.
Find out more about lung health checks by watching the video below:
I think I’m eligible for screening but I haven’t been invited
In many cases, you won’t be invited for screening immediately once you become eligible. If you’re worried about your risks of cancer or want to know more about screening, you should speak to your GP.
If you aren’t registered with a GP, you won’t get a screening invitation. If you have a serious mental illness, registering with a GP will also help you access extra support to stay physically well such as the option of having a full physical health check each year. Find out more about registering with a GP on the NHS website.
Support with the cancer process as a person with serious mental illness
Talking about cancer or attending cancer screening can be difficult for lots of different reasons, but there are lots of people and resources who can support you if you want to take part in screening.
In the video below, Specialist Screening Nurses from University Hopsital Lewisham talk about how they have supported people with serious mental illness access screening services:
Whichever screening service you attend, you should always be treated with dignity, respect and understanding. If you have particular worries, it may be helpful to let the screening service you are attending know so that they can ensure you get the support you need.
Will the staff at my screening know about my mental health condition?
Staff at your screening appointment will not usually know about your mental health condition unless you have told them. Telling them about your mental health condition can help staff to give you the best support and make your screening experience as comfortable as possible. The staff will listen to you and work with you to try and approach screening in a way that works for you. You may also want to contact the service in advance, so they can prepare any reasonable adjustments that may help you - such as a longer appointment where possible.
What if I’ve had a traumatic experience which I think could be a trigger for me during screening?
Some screening procedures can be uncomfortable and you might worry that they will make you feel distressed. By working with the healthcare professionals carrying out your screening, some of these fears might be reduced.
Some things which might help you to feel more at ease include:
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Asking for your appointment to be carried out by someone of your preferred gender. Usually cervical and breast screening is carried out by female staff.
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Taking an advocate or companion to your appointment.
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Asking for an initial consultation to learn about the screening tests before deciding whether you want to go through with them.
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Telling the healthcare professionals carrying out your screening about any words, phrases or actions which you think might make you feel upset. You might consider writing these down before the appointment so you can give them to the healthcare professional if you are worried about saying them out loud.
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Asking about different ways for the screening to be carried out, including whether you are able to do some of the physical elements of the screening yourself. For example, in some cases it may be possible for you to insert the speculum during your cervical screening.
While it might not always be possible to accommodate all your requests, the screening staff may be able to work with you to find the most comfortable solution for your needs.
Remember that it is your choice whether you go through with screening. If you feel during the appointment that you cannot continue, the tests will be stopped. You can always choose to return again in the future, and you won’t be judged for not completing the screening tests.
Additional information about cervical screening after sexual violence is available on The Eve Appeal website.
Can I bring someone to support me at my screening appointment?
Normally you should be able to bring a companion or advocate to support you during a screening appointment. It is best to try and contact the screening service in advance to check that bringing someone to your appointment is possible at the location you have been invited to. This may also be a good chance to hear about additional support that the screening service can offer to make you feel more comfortable and relaxed.
If you are outside south east London, check with your GP or other health care professionals for who to contact.
In south east London, if you have been invited to an appointment and want to find out more about bringing a companion or other support you can use the below contact numbers or email addresses:
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Breast screening: call 020 3758 2024 or email RF-TR.LondonBreastScreeningHub@nhs.net
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Cervical screening: contact your GP surgery through your normal channels
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Bowel screening: call 020 8333 3038 or email lh.bcs@nhs.net
Summary
