Understanding Bowel Cancer & Bowel Cancer Screening Communicating with Confidence

House Keeping Reassurance Please switch mobiles to silence Fire Exits & Planned fire alarms Toilet location Lots to get through, but its good to ask questions – there is no such thing as a silly question No tea breaks scheduled The elephant in the room! Cancer is an emotive subject. We have all been touched by it in some form in our lives. You will not be asked to share your experiences and if this session touches a raw nerve, its ok to deal with that in whatever way that feels ok for you, including leaving the room. The biggest reassurance of all – you are absolutely not going to be expected to know all there is to know about cancer by the end of this session. We will be going through some background information to put the bowel cancer screening programme into context, but your role in relation to the safe and well visits will be simply to ask the householder if they have completed the kit and if not, where to get a new kit. It is good however to know how to use the kit so you can reassure householders about how easy the process is.

Aims of this Session What are you being asked to do about the bowel cancer screening part of the Safe & Well visit? What is cancer? Why bowel cancer screening is included in Safe & Well visit. Background information – To increase confidence/knowledge in answering any questions: About bowel cancer: What is it? Importance of early diagnosis About bowel cancer screening: Who can do it? What are the benefits and risks? The importance of informed choice How do you complete a kit? Why people might not complete the kit What help is available for you and the householder

What are you being asked to do? Basically - Ask some questions…. Householders aged 60+: Did you receive a bowel cancer screening kit? Did you return the kit and receive results? If you didn’t complete the kit, would you like the fire service to request a kit to be sent out again? Please note: A maximum of 4 additional questions are to be added so that the hub can send out an alternative kit or more information if someone speaks another language or is disabled and/or signpost…..

Do you remember receiving a bowel cancer screening test kit in the post? Yes Did you complete it and get the results back? Do you have any questions about the results? Direct to: GP or Screening Hub 0800 707 6060 or CRUK Nurse Helpline 0808 800 4040 No Remind the householder to look out for their screening kit every two years, but if they notice any changes in their bodies before, go to their GP to get it checked Enquire if there are any particular reasons why – offer advice as appropriate* Advise that a new kit is automatically sent every two years between the ages of 60 and 74. People over the age of 74 can self refer every two years by phoning: 0800 707 6060 If appropriate, offer to support the householder to call for a new kit (if original unusable) or seek consent for a third party referral Go through flow chart with emphasis about the simplicity of the questions and how they will be aligned to the contact form. * Appropriate advice will be available on a prompt sheet DRAFT NOT FOR ONWARD CIRCULATION

Cancer is when abnormal cells divide in an uncontrolled way. What is Cancer? Cancer is when abnormal cells divide in an uncontrolled way. There are more than 200 different types of cancer. 1 in 2 people in the UK will get cancer in their lifetime. Cancer can sometimes spread to other parts of the body – this is called a secondary tumor or a metastasis

What is Bowel Cancer? Bowel cancer can start as growths called polyps. Polyps develop when cells grow too quickly and form a clump known as a bowel polyp or an adenoma. These are usually benign (non cancerous) but some may contain cancer cells. They may develop into a cancer over a number of years. Polyps found during any follow up of the bowel cancer screening can usually be removed easily.

Stages of Bowel Cancer Currently only 9% are diagnosed at the earliest stage – How important is that?

What increases the risk of developing it? What is Bowel Cancer? What increases the risk of developing it? Draft Introduce video – what is bowel cancer and what are the risk factors for developing it.

Prevention by stacking the odds in your favour.

Of all cases of bowel cancer in the UK, were preventable (2012) DRAFT NOT FOR ONWARD CIRCULATION

You can also stack the odds in your favour by being aware of your body, know when there has been a change and go and get it checked by your GP. Here is a short funny video with a serious message. Click to play video – ‘Spotting Cancer Early’ 2 mins https://www.youtube.com/watch?v=6Q18FPBEQpQ

Why Bowel Cancer Screening is included in Safe & Well visits? Bowel cancer is the fourth most common cancer in the UK There are now more than 41,900 cases of bowel cancer being diagnosed every year. Bowel cancer accounts for 12% of all new cancer cases in the UK (2012). 1 in 19 women during their lifetime 1 in 14 men during their lifetime

Why Bowel Cancer Screening is included in Safe & Well? Screening can mean early diagnosis or prevention, which improves survival Explain that the data has been taken from the East of England as this area had the most reliable data in terms of stage at diagnosis. It is widely accepted that a similar picture would be found across England.

Why Bowel Cancer Screening is included in Safe & Well? Survival has doubled since the 70s Screening improves survival! Emphasis on more ways to spot cancer early as the national bowel screening programme is an effective way to spot bowel cancer early.

Draft Why Bowel Cancer Screening is included in Safe & Well? We need to increase awareness National target 60% Draft Explain the national target is 60% - the yellow column is England, which as a whole does not reach the 60% target. The North West falls behind the England average and within Cheshire and Merseyside there is wide variation.

Draft Why Bowel Cancer Screening is included in Safe & Well? We want to detect more cancers that could be early stage disease Draft 1000 complete a kit 20 abnormal result 16 Have further investigation (colonoscopy) 8 have nothing abnormal 6 have precancerous polyps 2 have cancer Prevention Early diagnosis The BCSP is the best way we currently have available to check apparently healthy people to assess if bowel cancer can be prevented and detect bowel cancer before the person notices any symptoms so it can be diagnosed as early as possible.

Draft Why Bowel Cancer Screening is included in Safe & Well? We want to detect more cancers that could be early stage disease Uptake in Cheshire & Merseyside was 54.93% in 2014/15 66323 people didn’t take up screening Even if we only get half to take up screening… Draft 33161 complete a kit 663 abnormal result 530 have further investigation (colonoscopy) 265 nothing abnormal 199 precancerous polyps 66 cancers Prevention Early diagnosis Looking at the local area, on average the uptake is 54.93% which means that 66,323 people did not take up the opportunity to be screened. Even if only half of this number decided to take up the screening offer nearly 200 people would be prevented from potentially developing bowel cancer and 66 would have bowel cancer detected at the earliest stage. However, we must remember that it will always be a person’s choice as to whether or not they complete the screening test. We will look more into ‘informed choice’ later in this session.

What is Bowel Cancer Screening? It can detect bowel cancer at the earliest stages and improve survival It’s a FOB (faecal occult blood) test that checks for hidden blood in a poo sample, which could be an early sign of bowel cancer Aims to detect bowel cancer at an early stage when treatment is more likely to work. It can also sometimes prevent bowel cancer from developing in the first place. Pre-cancerous polyps found during the next stage of investigation can usually be removed easily. Explain that faecal occult blood means ‘hidden blood’ , blood that is invisible to the naked eye. Explain that the vast majority of cancers detected via screening are found at an early stage, which means treatment is more effective and survival rates much better. Explain that the FOBT test is the first part of the screening process. If blood is detected the person will be offered a further investigation, colonoscopy. If polyps are found during this procedure, they can easily be removed, preventing cancer developing.

Who can take part? People aged between 60 and 74 and registered with a GP practice are automatically invited and will receive the free home test kit from the regional hub to complete every two years. People aged 75 and over can request a home test kit by phoning 0800 707 6060 Explain that it is not the GP that sends out the kits. It is the regional hub in Rugby and that is where calls to the 0800 707 6060 number will be answered.

How do you do the kit? Using the kit: Person receives invitation just after 60th birthday FOB kit sent out with simple instructions for: Completing sampling at home Sending the samples to the laboratory BCSP information leaflet Using the kit: The kit will last for many months but must be completed and received within 14 days of the first sample being taken DRAFT NOT FOR ONWARD CIRCULATION

Doing the home testing kit Step 1: Preparation - What does the kit look like? The kit has 3 parts for 3 separate bowel motions that must be done on three separate days over two weeks Only 1 flap should be opened at a time The 3 parts can’t be separated. Each kit has a barcode with the persons name

Or all three! Doing the home testing kit Step 2: Collection– Using the right tools for your job The instruction leaflet mentions a few ways to collect the sample The pooh can’t get wet. Fishing the poo out of the toilet water contaminates the sample. Clean disposable container Cover hand in a plastic bag Folded toilet paper Or all three!

Doing the home testing kit Step 2: Collection– Using the right tools for your job Remember to repeat this process two more times within two weeks of the first sample being taken. Needs to be kept in a cool place – Not the fridge! DRAFT NOT FOR ONWARD CIRCULATION

Doing the home testing kit Step 3: Returning the kit Post the sample back to the lab in the foiled envelope provided. Results are normally back within two weeks. A copy of the results will go to the GP. DRAFT NOT FOR ONWARD CIRCULATION

How do you do the kit? Click to show Bill video

Doing the home testing kit Step 4: The results Normal Result No blood detected Unclear There was a slight suggestion of blood Abnormal Blood is detected No further investigations needed. Bill will continue to be invited to take part in screening every two years. This doesn't completely rule out cancer. So, it is important for Bill to get to know his body and what is normal for him. He should see his GP if he has any unusual changes that don't go away. Most people who have an abnormal result don't have cancer. Bill might be asked to do the test again or he might be given an appointment to see a specialist nurse at his local bowel screening centre to discuss having a colonoscopy.  The appointment should be within 2 weeks of the letter telling him the FOB test result Bill will be sent another kit and asked to do the test again. This is because the result could have been caused by other medical conditions or recent dental work This is for information only

What do you think would stop someone using the kit?

What do you think would stop someone using the kit? Fatalism Don’t want to know Embarrassment Don’t have the ability to complete the test. Don’t understand the instructions Fear

Languages/translation service Help available………. Leaflets in different Languages/translation service Pots for Physical disability/ sensory impaired Braille Coloured tape Instruction leaflet Visual Aids

What are the benefits and risks Bowel Cancer Screening? Bowel cancer screening involves testing apparently healthy people for signs that could mean a cancer is developing. Aims to detect bowel cancer at an early stage when treatment is more likely to work. It can also sometimes prevent bowel cancer from developing in the first place SAVES LIVES Bowel Cancer Screening lowers the risk of dying from bowel cancer by around 16% False Negatives Bowel screening works well in finding cancer, but, it is not perfect. It doesn't always find cancer when it is there. So, some people with bowel cancer will be missed. False Positives The tests pick something up even though they don't have bowel cancer. False positive results after FOBT can cause anxiety and lead to further investigations, such as colonoscopy.  Draft Go through this slide carefully and check understanding. Emphasize that people have a right to informed choice and this needs to be based on an awareness of both the risks and benefits.

The importance of informed choice It is the person’s choice whether to take part, but you can help them make that decision to participate or not, by making sure everyone is aware of the bowel cancer screening programme and knows the benefits as well as harms and that any barriers to participation are minimised. CRUK 2016 Explain that we will look at ‘barriers’ in more depth later.

If its not normal for you, get it checked Key Messages! Key Message If its not normal for you, get it checked Remember that: Cancer screening can prevent and detect cancer early Bowel cancer screening involves testing apparently healthy people for signs that could mean a cancer is developing. Early diagnosis can save lives by improving survival Bowel cancer detected at an early stage can be more treatable It is a person’s choice to participate or not If unusual changes are mentioned DO NOT CONTINUE TO DISCUSS THE BOWEL CANCER SCREENING PROGRAMME as this is only appropriate for apparently healthy people. Informed choice Advise people to see their GP if they mention that they have noticed ANY unusual changes. You are not a doctor .

If its not normal for you, get it checked Some, but, not all unusual changes… Change in bowel (pooing) habits – such as looser poo, pooing more often and/or constipation. Tummy pain (especially if severe) or feeling there is a lump in the tummy. Any unexplained bleeding from the bottom – this can be red, or it can be dark, looking like tar. Unexplained weight loss. Key Message If its not normal for you, get it checked

Reminder of what you are being asked to do? Basically - Ask some questions…. Householders aged 60+: Did you receive a bowel cancer screening kit? Did you return the kit and receive results? If you didn’t complete the kit, would you like the fire service to request a kit to be sent out again? Please note: A maximum of 4 additional questions are to be added so that the hub can send out an alternative kit or more information if someone speaks another language or is disabled and/or signpost…..

You can make a difference! We’re asking you to: Join us to help increase bowel cancer screening participation by asking the questions on the Safe & Well check Be aware that screening can save lives Be aware that early diagnosis of cancer can save lives Be aware that ANY unusual changes need to be checked. Key Message If its not normal for you, get it checked

What is the age range for the screening? How often do they get a kit? How do people aged over 74 take part? Why is early diagnosis important? Who would you suggest a person speaks to if they say they have noticed something unusual about their bodies?

mersey.scrimms@nhs.net Questions? Evaluation

Any questions or comments, please direct to: Thank You! Also many thanks to all the organisations who have contributed and supported this initiative. Educational package developed by Cancer Research UK and Halton Borough Council in collaboration with all partners noted. Any questions or comments, please direct to: Susan.spence@cancer.org.uk Or Kerry.grimes@halton.gov.uk March 2016