Raising Awareness of Prostate Cancer

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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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.

9. Summary of key facts Where is it?

10. Summary of key facts What does it do? 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

11. 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: saturatedfat, dairy products and red meat

12. 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

13. 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

14. 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’

15. 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

16. Key Charity Activities Prostate Cancer Awareness Month (PCAM) Volunteer led awareness raising service Fundraising activities Web site and publications Media and PR Policy & Campaigns

17. PROSTATE CANCER AWARENESS MONTH

18. 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

19. 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

20. 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.

21. 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

22. 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

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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)

29. 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

30. 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

31. Thank youQuestions? Questions? Thank you. Questions? 0800 074 8383 www.prostate-cancer.org.uk info@prostate-cancer.org.uk