Cancer early detection and prevention strategy Social marketing workstream

Cancer early detection and prevention strategy Social marketingworkstream A presentation for: 22 October 2008

Why are we here? To share progress in developing a social marketing intervention to reduce the health inequalities found in the early detection and prevention of cancer

Our framework for action

Segmenting target groups to understand: What are the risk factors for prevention? Who is late presenting? What are their lifestyles, attitudes and behaviours? What have we done so far? • Analysis of excess incidence and mortality • to identify: • Which are the largest cancers? • Which cancers kill the most people? • What is the scale of inequality for each cancer? • Where are the differences across the network? Understanding the context Understanding the audience • Research among healthcare professionals • and at risk groups to establish: • What are their underlying motivations for action? • What are the key benefits and barriers to prevention and early detection? • What can MCCN do to add most value? Understanding behaviours

Excess incidence and mortality by cancer Lung cancer accounts for majority of excess deaths.Below average incidence for most other cancers but high excess mortality suggests need for earlier detection focus Source: NHS/NWCIS data – 2001 – 2005

Very Low: Excess more than 20% lower than region Low: Excess between 6 and 19.9% lower than region Average: Excess between 5.9% lower or 5.9% higher than region High: Excess between 6 and 19.9% higher than region Very High: Excess more than 20% higher than region Some key differences across the network Excess mortality Given total region has higher than expected excess for all except female bladder and male skin cancer, only those regions with a “Very Low” difference to total region have lower than expected mortality compared to national average Source: NHS database, all comparisons with region average in % point

Primary factor Secondary factor Understanding the audience Prevention – what are the risk factors? Detection – who presents late? Source: Cancer reform strategy, NHS, Dec. 07, Background information to inform the Cancer Early Detection and Prevention Strategy – Oct 07 Reducing Health Inequalities through improved Early Detection and Prevention of cancer – a strategy for 2008-2010, Jan 08

Inequality groups BME’s • Diverse group with inherent cultural differences (e.g. 44% of Bangladeshi men smoke, Caribbean women are more likely to be obese) Particular issues around detection of Cervical and Bowel cancer: • Not aware of symptoms to look out for • Talking about bodily functions isa cultural taboo • Females cannot be seen by a male doctor • Religion might prevent from seeking help and perceptions of screening as “unclean” Learning disabilities • Particularly relevant to cervical and breast cancer, but also for bladder and bowel • Late detection as low percentage attend screening • Less aware, do not understand the importance of symptoms and therefore don’t go to the doctor as quickly Mental health • Particular issues for breast, cervical and bowel cancer • less likely to attend screenings • may not be monitored sufficiently to pick up issues • Perception that symptoms can be overlooked or assumed to be part of the pre-existing condition • Schizophrenics are 84% more likely to get bowel cancer than average Sources: Cancer reform strategy, NHS, Dec. 07, Background information to inform the Cancer Early Detection and Prevention Strategy – Oct 07, Reducing Health Inequalities through improved Early Detection and Prevention of cancer – a strategy for 2008-2010, Jan 08, Wirral Cancer Equity Audit, Apr 08, National Audit Office 2001, Tracking Obesity in England, the stationary office

“I’m a big foodie and know I should lose a few pounds” Profiling risk groups Used TGI to segment the population by risk factors: Heavy smokers Medium smokers Light smokers Heavy drinkers “I’ve got to die of something anyway” “I’m too busy with the kids to look after myself” “Drinking is just part of my everyday life” “Life’s for living - I enjoy a smoke and a drink” Obese Overweight Unhealthy diet Sun-bed users “I’m not very confident and am self conscious” “I’m too young to worry about my health” “It’s important for me to look good”

For example - Sun bed user Louisa from Liverpool, 16 years old 14.1% of the NW population aged 15+ likely to use a sun-bed. (1.6% above national average) – 2/3 are female, all social grades “It’s important for me to look good” Louisa lives at home and is at college taking a vocational qualification in hairdressing. She really cares what people think of her and outward appearance is everything. Status conscious, she looks up to celebs and is a fashion conscious shopaholic. She is always on a diet and feels self conscious about her weight so she skips meals to keep in shape. She likes taking risks, trying new things and adventure. Always out, she binge drinks with her mates and tries to get in the bars to be seen in. She pops to the doctors periodically – perhaps to pick up her contraceptive prescription

Pharmacists Nurses Charities GPs At risk patients Understanding behaviours One to one depth research, focus groups and workshops among healthcare professionals and at risk groups to understand knowledge and attitudes and to identify any potential barriers and opportunities for the future

Perceived benefits Perceived barriers New Behaviour Competing behaviour Messages Increase benefits Decrease benefits Personal and social benefits of action Decrease barriers Increase barriers Personal and social losses from inaction Achieving behaviour change Source: Fostering Sustainable Behaviour – Doug McKenzie Mohr, William Smith

GP – barriers Time • Not enough appointments available/phone-lines are busy • Not in QOF/not my responsibility • Work overload for primary care staff • Approachability of HCP Apathy/denial • Attitude: “it’s nothing serious” • Age – too young to be anything serious / too old for it to matter now • no family history • “People are too busy – they don’t check and they don’t ask” • Don’t want to bother doctor What barriers do we need to overcome to improve early detection and prevention of cancer? Fear • Fear of cancer and of screening process itself • Embarrassment at symptoms (esp males) Awareness/information/ mis-information • Lack of awareness of symptoms • Lack of information getting through to public • Lack of information for staff • Carers of learning disability patients need education

GP - opportunities What can we do to increase early detection and prevention of cancer? Easy access to screening • More opportunities in different locations to give patients choice, including open clinics and drop in Better information and education • Patient education and awareness raising • Simple checklists of what to do to prevent cancer and what to look out for • Signposting to clinics and screening • Practice website, Newsletter, Message on prescriptions, leaflets, TV ads and storylines, schools and colleges • Training for staff and on screen reminders Reward patients/ better follow-up • Good system for rewarding patients especially if miss initial screening • Follow up and education of non-attendees Relationship building/more conducive environment: • Approachability of staff • Good relationship GP or practice nurse encouraging patients to mention symptoms • Confidential areas to speak with staff/patients • Refer earlier Referral system: • Change referral form to not include irrelevant symptoms • Fast-track referral when not symptomatic • One-stop anaemia clinic • Not sticking too rigidly to guidelines • Hunch clinic (sixth sense)

Pharmacy - barriers All keen to emphasise their willingness to help, but practical barriers exist: Time • Pharmacists are enthusiastic but “there is a limit to what we can do” • “the workload, we are near saturation point...the government is asking us to do more year on year” Confidence • Pharmacists aren’t specialists, can’t diagnose and will always refer patients to their GP • “we don’t get an in depth view of patients symptoms” • “you have to be really wary about how you say things” • “you can’t force people to go to their GP if you think it is cancer” • “Drs are trained to break news like that using their skills” Fear “people think cancer means death they don’t want to know ” Embarrassment“some screening is invasive and people don’t like that...or bowel cancer you have to provide a sample” Apathy/denial “Biggest thing about screening - what I don’t know, won’t hurt me’... Awareness“Education, education, education’ is the main barrier to early detection - we don’t expect to get screening unless you pay for private healthcare’ “half the battle is getting people to the hospital even if they do make an appointment for screening, 50% don’t turn up - perhaps a small charge should be made for appointments?”

Pharmacy - opportunities What can we do to increaseearly detection and prevention of cancer? Building knowledge and extending signposting • Training as part of CPD • “If you train the pharmacists to know where people could go to get extra help and say ‘these are the options” • “Remember pharmacists don’t always know as much as people think they do – there are new drugs mentioned all the time and everyone wants to know about it” • Communicating via the RPS, professional press and post Providing information to patients • Leaflets and posters in store and inserts into prescription bags ‘‘make things more accessible” Education • “it’s an ongoing battle... education is always going to be needed” • “Make people more aware of self checks or what is available at pharmacies” Follow up • “targeting those requiring smear tests but following up with a phone call” Referrals • “Pharmacists might not want to advise people so they would need a suitable way to refer them”

Risk groups – attitudes to health • Combination of drinking, smoking and poor diet is the norm – yet they do not link this to the possibility of cancer • Heart problems more of an immediate concern and many visit GP for blood pressure and cholesterol checks • Generally unwilling to bother doctor un-necessarily – only visit if everyday life is threatened • More likely to worry about the health of others (e.g. partner) than their own • Biggest fear is not being independent and having to rely on others – leveraging this concern around the process of cancer may be a key trigger to behaviour change Life is for living – when my time is up, it’s up. It’s all in the genes anyway. The last thing I want is to become dependant on someone else. Eat, drink and be merry for tomorrow you might die.

Attitudes to cancer For the majority, cancer is not a major concern,despite having seen the suffering of close family or friends If you don’t talk or think about cancer, it won’t happen to you. I’m not in pain at the moment, so I don’t need to worry about my health. If you get cancer, you will die - eventually it will get you and treatment will only prolong the inevitable. There’s very little you can do to prevent cancer happening – it’s more about the luck of the draw.

Attitude to screening services • Majority positive to screening if it is suggested to them but do not actively seek it out because it is not on their radar • Women more familiar than men via cervical and breast programmes • Some experience of bowel screening via DIY postal packs - a couple rejected as they didn’t like the idea of the test and subsequent colonoscopy A few would resist screening: • Fear of having to change lifestyle – once you know you can’t ignore it • Would rather not know they might die • Scared of the treatment for cancer if positive • Cancer would mean too much emotional and financial pressure for their partner (men) • Scared of the other consequences of cancer – colostomy bags I would like to know if there was something wrong with me because I think I’m half way there now (50 yrs) so I’m thinking anything that can make my life better at my age no matter how big or small it is a good thing. The NHS sent me a simple test and I haven’t bothered. There’s nothing you can do about it if you’ve got it you’ve got it. If you’re numbers up, your numbers up.

Barriers - Attitudes to prevention People not sufficiently motivatedto alter their lifestyles in the hope of avoiding cancer

Barriers - Cancer knowledge • Very poor knowledge and lack of desire to know more • Virtually nobody could articulate the causes – when pushed, most mention genes, polluted environment and smoking • Information gained via shock stories in the media leaving the majority unable to separate myths from facts Key insight: Communication needs to be straightforward and simple to understand. There is a need to dispel the belief that cancer is solely about genes They reckon smoking causes cancer but I won’t have that. You see babies with it in the paper. It’s not healthy but it doesn’t cause cancer.

Barriers - Symptom awareness • Limited awareness of symptoms and common misconceptions • Strongest knowledge of lung symptoms accompanied by denial and written off as “just winter” • Bowel symptoms assumed to be tummy bug or piles – would self medicate • Bladder symptoms assumed to be infection and most likely to be ignored • Strong desire to know more as a trigger to action: • One respondent had all 3 bowel symptoms but hadn’t realised they could be connected. She vowed to make an appointment that day showing that once symptoms are known, the information would be acted upon

Barriers - ignoring symptoms Mostly • Don’t believe their symptoms are serious • Symptoms too trivial for doctor, don’t want to waste doctors time • Miss self diagnose (Flu, piles etc.) and self medicate • Difficult to get an appointment at the doctors • Embarrassed about talking about their symptoms (men) • Too proud (illness is a sign of weakness for some men) For some • Too old to do anything about it – when time’s up it’s up • Protecting their loved ones from what they suspect deep down • Believe that treatment will only delay the inevitable • Frightened about what will be found • Probably too far gone for treatment • Nervous of the effects of the treatment I went to the doctor because I found blood when I was coughing. He told me I’d burst a blood vessel in my throat. I cough up blood all the time now but I don’t go to the doctor because I know what it is It’s hard work to get an appointment at the doctors. You could be dead by the time you’ve got one in a fortnight’s time Sometimes I think I’ll leave it because I’ll go round the corner to the chemist and he’ll give me something. It’s not that he doesn’t want to tell his wife, he’s afraid to tell her. He doesn’t want to worry her.”

Opportunities – clear symptom information Playing on symptoms people may be experiencing can exacerbate fear although there is a need to elevate perceptions of minor ailment to overcome unwillingness to bother doctor.

Opportunities - Reaching out Unanimously positive to mobile clinics– convenient, local, friendly nurses. Seen as more specialist and more approachable than the GP. Strong desire for signposting to find out more

Opportunities – peer to peer Engaging real people to share positive early detection stories and tools to pass on knowledge to others My husband wouldn’t go to the doctor unless he really had to. He had bleeding and wouldn’t do anything about it until I found out. (female) I have a mate down at the pub. He goes to the toilet, like every five minutes. I’ve told him he should go to get checked out, we’ve all told him, but he won’t listen. He says, ‘I’ll be fine, I’m fine’, I think he thinks it’s too late and he’s a bit frightened. I’ve just been to Ireland with this man and I heard him getting up in the middle of the night and he was taking forever to wee and I said to him you need to go to the doctors. He said there’s nothing wrong with me and I said there is, there must be, you were up and down all night and I could hear you. I said look, it could be prostrate, it’s no big deal, just go, most men suffer with it.

Consequences of in-action... More shocking and personally relevant for those who persistently don’t attend screening.Link to trauma they would put their family through resonates highly.

Summary – emerging insights • Driving earlier detection offers more opportunities than prevention • There are significant barriers to overcome among healthcare professionals as well as risk groups • To trigger people to act: • Symptom education must be simple, consistent and sustained across all channels • Screening should be heavily promoted and followed up • Services should be more accessible within the community • Maximise opportunities to engage during routine visits to pharmacy, practice nurses, workplaces • Grass roots activity using peer pressure and impact on loved ones – tools for positive role models who bust the myth that cancer is death and inspire others to come forward early

Next steps • Further research among patients - one to one depths among risk groups for cervical, breast and skin cancer • Interviews with experts in specific inequality areas of mental health and learning disability • Stakeholder engagement to share insights and prioritise actions • Articulate the social marketing strategy and design interventions to reduce inequalities among key groups

Thank you Any questions? For more information please contact belinda.miller@corporateculture.co.uk

Health and the Muslim community • ‘Health’ is highly valued – it is the teaching of the Koran to take care of body and health • Belief that God decides your fate and you need to accept that • Did not look out for the symptoms of cancer • No awareness of screening • Language barriers mean letters/information in English are ignored • Women unwilling to discuss screening with daughters –culturally not done • Preferences for screening would be for it to be conducted in the GP’s or via a mobile unit (near the Community Centre) by a female nurse Although we are not supposed to drink alcohol if a doctor said drink alcohol for 2 weeks and then you would be better we would do it, we would be expected to do it. Health overrides.

! Many see weight loss as symptom of any cancer. If blood is detected anywhere, this would signal that something is wrong and probably trigger a visit to the doctor – but their immediate thought is not cancer Knowledge of the causes and symptoms Bowel • Most unaware of causes • Belief it may be linked with contaminated food rather than lack of fibre • Most did not know the symptoms and would self medicate for “tummy bug” • A few mention blood in stools – assumed to be piles Bladder • Most unaware of causes • Belief it could be linked to alcohol • Most did not know the symptoms – generally passed off as a urinary tract infection and particularly likely to be ignored • Some mention pain when passing water Lung • Wide knowledge of link to smoking, accompanied by much denial. Some mention environmental and industrial pollution • Some recall of symptoms (coughing, phlegm, breathless) often written off as “just winter”. Key insight: All were genuinely interested in what to look out for. Although they wouldn’t change their behaviour to prevent cancer , if they found out they had signs of cancer they claimed they would seek treatment for it

Cancer early detection and prevention strategy Social marketing workstream