Cancer and an SMI
What is a Serious Mental Illness (SMI)
Serious mental illness (SMI) is defined as a mental, behavioural, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities.
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Things to Consider when talking to a person with an SMI
The word Cancer can insight fear in some people and for people with a diagnosis of a Serious mental illness (SMI) this fear can be increased dramatically. Additionally, when someone is struggling with their Mental Health, Their Physical health can be forgotten or seen as less important.
Due to the different complexities an SMI can add to a person’s life, accessing screening or talking about Cancer can be an added difficulty and the service provision on offer may not always be suitable to the needs of a person with an SMI so can act as a barrier to them accessing services. Some of the barriers a person with a diagnosis of an SMI could face are listed below. This is not a complete list as every person’s needs and experiences can differ, but it provides areas to consider which have been shared with us by services users with a diagnosis of an SMI.
When talking about cancer with all people not just people with an SMI it is important to stress that Cancer is not a death sentence as over 85%[1] of people diagnosed with cancer at stage 1 or stage 2 will survive.
Survival rates for cancer are increasing each year due to improvements in diagnosis and treatment. It is important to stress that these survival rates are reliant upon people going to see their GP at the earliest opportunity should they experience unusual symptoms.
Building trust is always a successful way to encourage people to engage with services. If a person doesn’t trust you then encouraging them to bring along someone, they do trust will help to facilitate any discussions that need to be had.
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Barriers to screening for someone with a diagnosis of SMI
There are some known barriers for people with a diagnosis of SMI and some of these are described below,
- Lack of understanding of the importance of screening – when dealing with mental health issues physical health can sometimes be forgotten or seen as less of a priority so reading information about screening services and attending an appointment might not be seen as a priority
- Negative past experiences with services – If a person has had a lot of contact with professional services over the course of their life, and possibly had a bad experience, this could lead to mistrust of professional settings which may make them less likely to want to engage with the screening services or talk about symptoms or concerns, they may have.
- Fear talking about cancer and a cancer diagnosis – Cancer can still be seen as a scary word so fear of being diagnosed with Cancer can lead to people avoiding engaging with the services. Some people feel that cancer is still a death sentence and would prefer not to know if they have cancer if they are going to die anyway so it’s better not to talk about it
- Poor access to screening services – Some screening services can be difficult to access for people with complex needs, for example wheelchair users may need a hoist which isn’t always available at every screening site.
- Transport – some screening sites can be difficult to access and may require multiple modes of transport to get to, sometimes the closest screening site to a person isn’t the easiest to get to when using public transport. If a person has a diagnosis of SMI, the thought of having to navigate multiple public transport changes can incite a fear that would prevent them from taking the journey
- Embarrassment – this could be embarrassment of talking about physical issues or embarrassment of the types of tests that need to be carried out to diagnose cancer can also be off putting for some people.
- Past Trauma – for a person who has experienced trauma in their lifetime, the thought of going to a medical setting, and get undressed in front of a stranger to have an intimate procedure, would not even be considered. Particularly where others may have described it as painful to them. The whole process of screening can be uncomfortable for a lot of people so when you add on past experiences it will be even more difficult to consider.
- The need to take timed medication can be a barrier if this is not accommodated. A patient will know better if they must take medications in order to face the day and will better understand the optimal time for them to attend an appointment.
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Adjustments for people with a diagnosis of an SMI
People with a diagnosis of SMI will face numerous barriers to accessing screening and engaging with professionals as well as other barriers we may not be aware of as everyone’s needs are different.
Therefore, we can’t provide a complete list of adjustments that may be needed but we can give an overview of some of the things that can be used to make services more accessible.
- Assess each person’s needs on a case-by-case basis. – Listen to the person to better understand what they need and where their concerns arise from.
- For screening appointments if you know the person attending has a diagnosis of an SMI a pre-screening phone call to talk through what to expect on the day, what they need to bring, and what they can and can’t do beforehand can have a huge impact on reducing anxiety.
- Offer the person the choice of location date and time for their screening appointment if available. This will not only give the person a sense of control over their appointment. They may have negative memories of particular locations or settings which may be off putting for them and would mean they won’t attend. By giving them the choice they can choose not only a location that’s easier for them to get to but also a location that they are comfortable with.
- Offer the person a trial run, this can be as simple as the week before their appointment they can have the chance to attend the screening location without the added time pressure or fear of the screening so they can test their route and see the location in a less pressured way. Additionally, if they can also be shown the equipment used and the process of how their appointment may run then the fear of the unknown will be reduced.
- When talking to someone about cancer it’s important to stress the survival rates and the importance of raising concerns early to get the best outcomes.
- Stress the ability to be able to be accompanied by a trusted friend or family member. Due to space issues, It may not be possible to be in the room during the procedure but accommodations can be made.
Cancer Screening things to consider
Breast Cancer Screening Specific Conversations
For some people the thought of attending a breast screening appointment can fill them with dread. It’s not only the getting to the place on time that they must worry about but also the thought of having to strip down to the waist in front of a stranger and having their breast tissue squeezed between two plates.
The fear of attending this appointment for people with a diagnosis of an SMI can be overwhelming, a person with an SMI my suffer from server anxiety or may have experienced trauma at some point in their lives which will only make the thought of attending the appointment even worse.
When talking to someone about breast screening it’s important to highlight the following things.
- Screening saves lives
- The patient is in control of the appointment and can stop it at any time if they are uncomfortable
- The staff have performed hundreds of scans on multiple people so there isn’t anything they haven’t seen before.
- Patients can take someone in with them that they trust even if the patient is male if it makes them feel more comfortable. Safety considerations must apply with x-ray so the supporter may not be able to be in the room if space is limited. But describing that the patient needs to be accompanied can mean a different venue is chosen.
- Screening can pick up abnormalities that are too small for you to be able to feel so attending the appointment means issues can be detected early which means the chance of a positive outcome increase.
Bowel Screening Specific Conversations
Talking about Bowel health and Bowel cancer can sometimes be an embarrassing subject for some people, not everyone likes talking about their toilet habits and this can sometimes prevent discussions. The best way to overcome this is to normalise the conversation and meet people where they are, if they say poo, you say poo, if they say stool then you say stool.
As Bowel screening is done at home, this can sometimes be overwhelming for some people as they have a fear of getting it wrong. Offering people the option to see a demonstration video or a practical demonstration using a chocolate spread can reduce this fear.
There is also an added Yuck factor with bowel screening and the sample collection so again normalising the conversation and showing how it can be done without being disgusting.
When talking about bowel screening with people it’s important to stress
- bowel screening is a check of the bowel’s health it isn’t a check for cancer. A positive bowel screening result could mean you have a polyp which needs to be removed as part of a small procedure it doesn’t mean they have cancer.
- Completing the kit is quick and easy to do and can detect changes before they become an issue or turn into cancer.
Ways to help a person complete a kit
- Talk about bowl screening and the importance of completing the kit regularly especially if you know someone is due to receive a kit soon.
- Offer videos and practical advice to help collect the sample
- Invite a person into the GP practice to complete their kit there with support
- Offer people the chance to drop their completed kit off to the practice to be returned if they are uncomfortable putting it into a post box.
- Follow up people who you know haven’t returned their kit to encourage them to complete the kit or order them a new kit should they have miss placed the original.
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Cervical Screening Specific Conversations
As with breast screening a cervical screening appointment is an invasive procedure which has a reputation for being uncomfortable. When talking to someone about the cervical screening appointment the general talking points are like breast screening however there are other things that can also be included in the conversation such as
- Cervical screening might be slightly uncomfortable, but it should never be painful. If the patient is experiencing pain, they can ask for a smaller speculum to be used as this should alleviate any pain.
- Listening to music during the procedure can help keep you relaxed which will also help stop it from hurting.
- The whole procedure takes less than 2 minutes to complete and really can save your life
- If you are concerned about screening, then you can ask for a double appointment so you can talk through what will happen with the nurse beforehand and ask any questions you may have.
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Useful Resources
“A Right To Live” – SMI and Cancer Screening
“Bits Boobs and Poo” – SMI and Cancer Screening
https://www.selca.nhs.uk/patients-and-carers/cancer-and-serious-mental-illness
https://pmc.ncbi.nlm.nih.gov/articles/PMC12075676/
[1] https://researchbriefings.files.parliament.uk/documents/SN06887/SN06887.pdf