Raising Awareness of Prostate Cancer Sarah Porch, Head of Services The Prostate Cancer Charity

Looking at The Prostate Cancer Charity and our work Quick overview of key prostate cancer information Challenges faced in raising awareness of prostate cancer Current awareness activity undertaken by the Charity Future developments

The Prostate Cancer Charity The UK’s leading prostate cancer charity Our vision: A world where lives are no longer limited by prostate cancer Our mission: Fighting prostate cancer on every front – through research, support, information and campaigning The UK’s leading charity: Office bases in London and Glasgow c. 65 staff c. 60 volunteers Income of £6m. Growing org. 36% increase in income on previous year. Relatively small compared to other cancer charities: Breast Cancer Care income of £15m; CRUK £142m. 3

What do we do? One to one - Helpline, email and peer support Information – online and publications Message boards Research funding Work with health professionals Campaigning Fundraising Awareness raising A quick run through of the Charity’s offerings: Freephone Nurse Led Helpline – only prostate cancer Helpline like this in the country Information – wide range available online and publications – stall is here today with materials available to take away Peer support – volunteer led telephone based service facilitated through our Helpline - run for people affected by prostate cancer, by people affected by prostate cancer Fund research - £7m funded so far. Peer reviewed system open to all types of research Working with health professionals – Masterclass last year, event in Glasgow for nurses in May, events like this, newsletter and web page Campaigning – lobbying government; issue specific (eg Hormone Therapy); Voices involvement (eg events in Glasgow and Inverness to inform campaign development) Fundraising – the majority of our income is voluntary. We have a whole range of fundraising activities from community based events such as the Real Man Cup 5 a side and coffee mornings, Movember, through to corporate sponsors such as M&S and Snap On Tools. Awareness raising – going to focus on this today 4

Awareness Raising Goals The Charity works to a set of five long term strategic goals, two of which focus on awareness: By 2020, society will understand the key facts about prostate cancer and will act on that knowledge By 2020, African Caribbean men and women will know more about prostate cancer and will act on that knowledge The reason we have pulled out African Caribbean community is the 3x elevated risk in that population There is a range of targets associated with these goals

Why raise awareness of prostate cancer? The most common cancer in men in the UK 35,000 diagnoses per year 10,000 deaths per year Not known how to prevent prostate cancer Earlier diagnosis can lead to more treatment options Evidence that many people still do not know a lot about the prostate and prostate cancer In Scotland, second most common cancer in men after lung, but difference is only 60 diagnoses and year previous was higher than lung. In Scotland men have a 1 in 13 lifetime risk of getting prostate cancer. It is estimated that in 2005 over 14,000 men were living with prostate cancer in Scotland. 2008 ICM poll 56% of men know prostate cancer is the most common cancer in men Only 32% correctly identified the function of the prostate gland Ethnibus market research showed that: 58% African Caribbean men knew prostate cancer most common cancer in men Only 15% knew AC men more likely to get prostate cancer than other men. 2007 ICM poll 13% of men aware of function of prostate gland 46% thought breast cancer is 3 x more common than prostate cancer 2003 ICM poll 89% didn’t know function 66% didn’t know where it is in the body 33% didn’t know only men have a prostate

Other research Charity commissioned focus groups with men Prostate cancer known to be an issue as get older but not the issue - assume lung & bowel cancer more common The scale of prostate cancer not known; it surprised and shocked most people Tend to marginalise it as an old mans disease - did not expect it to affect them Unsure what prostate is & what it does Vague about symptoms & this made disease seem remote & unimportant vs better understood cancers Focus group with GPs Qualitative research projects In 2008 commissioned two qualitative research projects to aid the development of our awareness raising strategy. The first was a series of six qualitative research groups amongst unengaged men and their partners in June 2008. The objectives were to gain an understanding of the audience, their relationship with health and their current awareness and knowledge of prostate cancer. understand which messages engaged our audience most effectively and to appreciate how to use the facts about prostate cancer to increase men’s receptivity to the issue. Six two hour groups were conducted, four amongst 50 to 65 year old men and two amongst women with partners of the same age. The groups were biased to lower socio economic groups and were spread amongst London, the Midlands and Scotland. One of the male groups was African Caribbean. Conclusion – men felt that is a problem with a silence around prostate cancer which needs addressing The second was a research study of GPs attitudes to awareness raising which involved 12 depth interviews in December 2008. Research on GP attitudes to raising awareness of prostate cancer and their view on what should be strategy. Depth interviews 12 GPs who represented a range of rural and urban, regional and attitudinal perspectives, ensuring that we also included those who represented an African Caribbean community. WHAT THE GPS THINK OUR COMMUNICATION STRATEGY SHOULD BE: The challenge Get men who have prostate symptoms to go their GP. Make them see that they have a problem that needs attention, don’t alarm them but don’t allow them to ignore it either, prompt them to get it checked out with their GP. The audience Primarily: C2DE men and African Caribbean men, 45-65. No serious health issues to date so rarely visit the surgery. Ignorant on the prostate and prostate cancer. Secondarily: their partners. 7

What do we aim to raise awareness of? The prostate gland and its function Prostate cancer the most common cancer in men Risk factors Signs & symptoms …and to encourage men concerned about prostate symptoms to act on this knowledge and visit their GP. The Charity has set itself a range of targets associated with these goals which focus on Targets 75% of men & women will know that prostate cancer is the most common cancer in men 70% of men & women over the age of 45 will know the risk factors for prostate cancer 70% of men & women over the age of 45 will know key signs & symptoms of prostate cancer 90% of men with a concern about prostate cancer symptoms will act on that knowledge and will visit their GP. By 2020, society will understand the key facts about prostate cancer and will act on that knowledge By 2020, African Caribbean men and women will know more about prostate cancer and will act on that knowledge

Summary of key facts Where is it? The organisers asked for a quick knowledge update so will have to present this info as being about placing the presentation in context. More detailed info available via Charity’s stand. You could always ask the audience if they want one and skip over it if they know exactly what’s what.

Summary of key facts What does it do? What can go wrong with it? It’s a secondary sex gland, which produces up to 1/3 of whole ejaculate; it liquefies clotted semen What can go wrong with it? Benign Prostatic Hyperplasia (BPH) Prostatitis (infection and inflammation) Prostate cancer

Summary of key facts What are the risk factors for prostate cancer? Gender (!) Age: 90% over 60 Ethnic origin: 3x more likely to be diagnosed if African Caribbean Family history: 2.5x more likely to be diagnosed if father or brother has had it Diet: saturated fat, dairy products and red meat Age: in Scotland 89% of prostate cancer cases are diagnosed in men over 60.9 • Ethnicity: African Caribbean men are three times more likely to develop prostate cancer than white men. • Family: you are 2.5 times more likely to develop prostate cancer if your father or brother has had it. • Diet: if you have a diet rich in fat, dairy products and red meat, this may increase your risk of developing prostate cancer (and other health conditions). Important to highlight that prostate cancer may cause similar symptoms to non-cancerous prostate problems.

Summary of Key Facts No symptoms at all Or the following may be signs of a prostate problem A weak urine flow Needing to urinate more often, especially at night A feeling that your bladder has not emptied properly Difficulty starting to pass urine Dribbling urine Needing to rush to the toilet, so that you may even leak urine sometimes Less common Pain when passing urine Pain when ejaculating Pain in the testicles

Challenges in raising awareness Raising awareness of prostate cancer is controversial Complex disease range of possible symptoms or no symptoms at all no test to distinguish slow growing & aggressive forms of disease; can lead to over-treatment Problems with detection Raising awareness of prostate cancer is complex and controversial with disagreement over what should be done Within prostate cancer field is huge spectrum of views on whether awareness raising should be carried out. Some of medical community don’t think its wise, support groups and men with prostate cancer want us to be doing far more. Have to respond to those we represent and evidence based so take middle ground. have many internal discussions about this and Charity is working on awareness strategy Understanding of relationship between awareness raising and diagnosis of the disease is limited. TPCC wants to ensure people at risk of aggressive prostate cancer are diagnosed early – strategy And that anyone with symptoms goes to GP quickly. Unfortunately with many cases of aggressive prostate cancer – no symptoms However, by raising awareness could lead to increasing diagnoses of men who have slow growing form of cancer and in whom it would not have caused any problems in their lifetime. They may have treatments which have side effects that impact significantly on quality of life e.g. incontinence, impact on sexual function PSA test – can’t tell all men to have – pro’s and cons – advocate informed choice

Challenges cont. Difficult to agree simple key messages & calls to action – no clear prevention message Men’s uptake of health messages Clichés & stereotypes Views of primary care – ‘worried well’ Without clarity on testing, symptoms (many men don’t have them), call to action awareness messages become very complex when need to be simple. And cannot be specific about what we want men to do once they are aware. This forces our work to be general and less focussed. Agreed key messages on symptoms from DH has helped but call to action still difficult Men’s resistance health based messages – Our own research has reinforced previous evidence which suggests that 50 plus men are often unengaged with their health and reluctant to discuss personal issues, this is particularly notable in lower socio economic groups and these men are also most likely to be unaware of the risks of prostate cancer. They can also be hard to reach in media terms and this is a major challenge. Much of the language around men’s health and PCa trades in stereotypes and cliches (eg Real Man Campaign; use of pants on our posters) – this can divide an audience and no clear evidence yet on what works for who GPs disagree on benefits of awareness raising of prostate cancer – some GPs unsupportive of testing in men without symptoms. Concern about raising awareness in worried well

How the Charity raises awareness Range of audiences Men in elevated risk groups General public Healthcare professionals Govt Partners (?) Tools for raising awareness: Media work/mass media campaigns Community outreach New media Political campaigning activity Fundraising activity Services: Nurse & Volunteer outreach, Media and Public relations Activities: Awareness Month This has been directly developed from the Scotland Volunteer Programme and is a new way for volunteers to be involved across the UK Nurses are available to give talks in various settings – Medical presentation 15

Key Charity Activities Prostate Cancer Awareness Month (PCAM) Volunteer led awareness raising service Fundraising activities Web site and publications Media and PR Policy & Campaigns Focussed in on PCAM as mass campaign And on community outreach via the volunteer campaign

PROSTATE CANCER AWARENESS MONTH

Prostate Cancer Awareness Month Previously a week – March 2009 Theme ‘It Matters’ - raise awareness of scale Get people talking about prostate cancer Poster campaign & media work Events, fundraising and outreach using PCAM pack New awareness leaflet with signs & symptoms Corporate partners – M&S 35,000 men diagnosed a year – came out of focus groups

Volunteer Programme Launched in Scotland in 2007 UK wide 50 awareness volunteers All personally affected by prostate cancer Information stands Talks/workshops in local community Provided with awareness presentation and resources Post talk/workshop evaluation e.g. workplaces, Rotary Groups, community health events

Older & Wiser Programme By 2020, African Caribbean men and women will know more abut prostate cancer and will act on that knowledge African Caribbean communities in London boroughs Hackney, Lambeth & Newham Train and support men to become community ‘champions’ to raise awareness Pilot to investigate the best way to involve and support African Caribbean volunteers. In 2007 The Charity launched a volunteer programme to train and support men to become community champions to raise awareness within their own community. Funded by the City Bridge Trust, the project initially aimed to train community champions from various black and minority ethnic (BME) groups within six London boroughs. Following findings from the first phase of the project, work in 2009 will now focus specifically on African Caribbean communities in the boroughs of Hackney, Lambeth and Newham. This reflects The Charity’s new strategic goal to raise awareness of prostate cancer within the African Caribbean community due to the higher risk of developing prostate cancer within this group. Through close partnership work with community and support groups within the three boroughs, men affected by prostate cancer will be recruited to help raise awareness within their communities. The project will be integrated with our national volunteer training programme, but will be a pilot to investigate the best way to involve and support African Caribbean volunteers in the future.

Fundraising Fundraising generates vital funds but also generates awareness Every November we have a moustache growing competition called Movember Raises funds (c£2m in 2008) Raises awareness: 16,000 participants Fundraising, as well as generating vital funds, also generates awareness. Movember example. 16,000 participants, most of whom are younger men, plus however many sponsors

Website & Publications Web site contains all of our most up to date information Our range of publications on the prostate gland and prostate cancer is available free of charge How many hits does the site receive per year?

Awareness activities cont. Media & PR team generate coverage and provide comment on relevant stories Policy & Campaigns team work to influence government and other decision makers to move prostate cancer higher up the agenda The role of Policy & Campaigns influencing govt and awareness of hcps through specific campaigns and influencing work on issues such as PCRMP Fundraising activities as well as raising vital funds has side effect of raising awareness

How do we know what works? Prostate cancer specific research into this area is almost non-existent As with all awareness works there is a range of challenges in evaluating impact: Difficult to track changes in awareness Difficult to attribute behaviour change e.g. to awareness talks & mass media campaigns Challenge of tracking changes over time - decide measure & stick to it

Challenges cont. Lower socio-economic groups key audience but hard to access African Caribbean men - bespoke research required Hard to evaluate impact of individual campaigns vs other work Cost – national level surveys need large samples Challenge of tracking changes over time - need to decide measure & stick to it - Challenge as knowledge of prostate cancer evolving and therefore messages may evolve Difficulty of isolating effect of specific awareness raising activities Understanding the impact of individual awareness materials/campaigns is a challenge as different charities/organisations undertaking different campaigns and Charity itself undertaking different work.

What next for the Charity? We need robust information on what works Further market research Tracking survey Sharing good practice with other organisations Development of an evidence based segmented awareness strategy, using different methodologies for a range of audiences TPCC now wanting to evaluate awareness of prostate cancer more consistently over time. Have committed to an ongoing (twice yearly) study which tracks changes in prostate cancer key messages over time amongst our key target audience of men over 50. Measuring understanding of scale and prevalence of prostate cancer, awareness of the Charity and understanding of risk factors and dietary links. The research comprises 500 online interviews and is conducted by I to I research – problem won’t reach all groups e.g. Older men without online access We have had the baseline figures for the first round of the study. 69% spontaneously mentioned prostate cancer as most common form of cancer in men Older men, those living with partner & internet users were the most aware. Working men and men in lower socio economic groups least aware. Qu Which cancer do you think occurs most commonly in men in the UK? Qu- How many men do you think are diagnosed with prostate cancer every year in the UK? Qu - Now thinking about prostate cancer in more detail, at what age do you think men have a greater risk of developing prostate cancer?

What next? Role of Government Update of the Prostate Cancer Risk Management Programme – Scotland? Isn’t yet clear where Awareness work will sit under newly formed Scottish Cancer Taskforce Possible role for Scottish government to provide Central repository of awareness raising initiatives - sharing good practice and facilitating relationships between vol orgs and health agencies Evaluation support – techniques Evidence on what works in awareness raising Not yet clear what will happen with PCRMP in Scotland – seen as only/key tool to supporting GPs in raising awareness/decision making in PSA testing SCT has been formed to ensure delivery of Better Cancer Care (Scottish cancer strategy) but awareness although mentioned in strategy is totally missing – this is now being addressed. We would like govt to do these things to support work as they are unlikely to fund any population wide programme.

Awareness Measurement tool National Awareness and Early Detection Initiative NAEDI (England & Wales) Development of a prostate cancer awareness measurement tool. May incorporate: Scale of prostate cancer Knowledge of risk factors Symptoms How long men would wait before acting on awareness information e.g. act on symptoms Whether the 'right' men are responding to messages (e.g. according to symptoms/risk) Is this worth including? Are there other things we want to mention such as the awareness pilots?

What can we do for you? Provide free information materials including posters, leaflets, etc. Provide you with a speaker or stand for events Keep your knowledge up to date through our health professionals newsletter/training events

What can you do for us? Participate in Prostate Cancer Awareness Month Let us know if you’re undertaking any prostate cancer awareness work so we can share good practice Request for one of our volunteers to give a talk/workshop

Questions? Thank you Questions? Thank you. Questions? 0800 074 8383 Final thought We know we are making progress on knowledge of prostate cancer being most common cancer in men – but that is only starting point. Challenge for us is to get robust evaluation processes in place for our work – starting to happen 0800 074 8383 www.prostate-cancer.org.uk info@prostate-cancer.org.uk