1. Be Clear on Cancer campaigns for early diagnosis Update event for Blood in Pee national campaign October - November 2013 Chair: Sean Duffy, National Clinical Director for Cancer, NHS England

2. Introduction Welcome and setting the scene Aims of the event Sean Duffy, National Clinical Director for Cancer NHS England 1.00 The Blood in Pee Campaign The Blood in Pee Campaign part of Be Clear on Cancer A PHE perspective on Be Clear on Cancer National development, creative, evaluation and learning What happens when it goes live a voice from the pilots Jane Allberry - DH Prof Kevin Fenton PHE James Brandon PHE Amanda Boughey CRUK Suzanne Thompson and Jo Cresswell Northern England 1.10 1.20 1.45 What is the likely impact of the Blood in Pee national campaign? Chris Gibbins, DH 2.05 Q&A fresh tea and coffee available 2.20 Future plans for 2013/14 Be Clear on Cancer Campaigns Sean Duffy NHS England 2.40 Aligning national and local delivery new accountabilities, organisations and ways of working A panel with an opportunity to ask questions, chaired by Sean Duffy. Roy McLachlan NHS England Julie Owens Cumbria County Council Hilary Walker NHS IQ Jane Allberry DH James Brandon PHE Amanda Boughey CRUK Jo Cresswell Northern England 3:00 Summary of next steps and close Sean Duffy NHS England 3.50 Agenda 3. Aims of this event This event is intended to: Provide an update on the national Blood in Pee campaign running Oct-Nov 2013, including modelling of the estimated impact on the NHS Share experiences from Be Clear on Cancer Blood in Pee pilots Review the impact of the BCOC campaigns so far Share latest plans for BCOC February 2014 campaigns Be an opportunity for you to give us feedback on your experience of the campaigns and to gather suggestions for how these could be improved 4. Setting the scene Cancer Reform Strategy (2007) Launch of National Awareness and Early Diagnosis Initiative Improving Outcomes: A Strategy for Cancer (2011) Sets out the Governments ambition to save an additional 5,000 lives per annum by 2014/15, through earlier diagnosis and better access to treatment Be Clear on Cancer Campaigns Launched in 2010/11 Approach developed over time in consultation with stakeholders and panels of experts, using research with healthcare professionals and target audience 5. Cancer survival 1 year and 5 year survival rates are generally lower in England than comparable countries in Western Europe Coleman et al (Lancet 2010): Up to date survival trends show improvements in cancer survival, but the gap between countries remains. Differences are consistent with late diagnosis and differences in treatment Whether the gap in survival rates is due to differences in stage at diagnosis or treatment, it is generally recognised that earlier diagnosis is a major issue 10,000 deaths could be avoided each year in England if our cancer survival rates matched those in the best countries in Europe 6. Breast ~ 2000 Endometrial 250 Colorectal ~1700 Leukaemia 240 Lung ~1300 Brain 225 Kidney / Bladder ~990 Melanoma 190 Oesophagogastric ~950 Cervix 180 Ovary ~500 Oral/Larynx 170 NHL/HD 370 Pancreas 75 Myeloma 250 [NB Prostate has been excluded as survival gap is likely to be due to differences in PSA testing rates.] Data derived from Abdel-Rahman et al, BJC Supplement December 2009 Avoidable deaths per annum if survival in England matched the best in Europe 7. Rationale Generally the earlier the stage of cancer when it is diagnosed, the better the chances for survival If kidney and bladder cancers are diagnosed at the earliest stage, one year survival is as high as 92-97% At a late stage, it drops to just 25-34% If the number of people in England who survived bladder and kidney cancers matched the best in Europe, around 1,000 lives could be saved each year Around 16,600 people in England are diagnosed with kidney and bladder cancer each year and 7,500 die from them 8. Achieving earlier diagnosis (1) Raise symptom awareness amongst the public and patients Encourage prompt presentation to the GP Support GPs to refer on appropriately Ensure sufficient capacity in secondary care 9. Achieving earlier diagnosis (2) Focus on the biggest killers Funding provided through IOSC - 450million over this Spending Review period to support work to improve earlier diagnosis The importance of evaluation we are still learning 10. Blood in pee campaign part of Be Clear on Cancer Jane Allberry Deputy Director Sexual Health, Screening and Early Diagnosis Department of Health 11. Overall approach Campaigns link to national priorities Start local, scale up to regional, go national What these levels of campaign involve: - deciding focus: views of expert stakeholders etc - determining messaging - local activity - adding in TV at regional level - going national - stakeholder engagement - other support, e.g. shopping centre events Blood in pee campaigns to date: - 3 local pilots (2012) - regional pilot in Tyne Tees and Borders TV regions (Jan-March 2013) 12. Public Health England: Perspective on Be Clear on Cancer Professor Kevin Fenton Director of Health and Wellbeing Public Health England 13. Yvonne Ridley Public Health England Wednesday 4th September 2013, Leeds 14. Blood in Urine Why Kidney & Bladder Cancer Why focus on blood in urine Whos at greatest risk 15. Be Clear on Cancer Be Clear on Cancer Campaign Roll-out 16. Creative Approach Task: Get people who notice blood in their pee to see their GP straight away Insight: Men dont talk about their problems whilst women are more open and happy to discuss 17. Creative Development Research Campaign seen as relevant Reflected respondents opinion that blood in pee is significant Execution see as action-focussed DM tested for the first time and positively received 18. TV - Whistle 19. TV - Maybe 20. Creative Work Press ads and Posters 21. Direct Mail 22. Blood in Pee Leaflet & Pharmacy Bag 23. Be Clear on Cancer Blood in Pee campaign evaluation 24. Evaluation We recognise there is a lot of stakeholder interest in the impact of these campaigns Comprehensive evaluation of all campaigns to date has been coordinated by Cancer Research UK (CR-UK) As of April 2013 National Cancer Intelligence Network (NCIN) will lead the evaluation working with CR-UK to ensure consistency Evaluation metrics have been selected to reflect the different points along the patient pathway Data from a range of sources: bespoke studies (eg awareness tracker surveys, GP attendances), routine data collections (eg diagnostic activity), commissioned datasets (cancer registry data) Some measures can take months to come through due to complex nature of the data (eg cancer incidence & stage) 25. Evaluation Metrics for Be Clear on Cancer activity Metric Broad questions were seeking to answer Cancer and campaign awareness Are people seeing the campaign and is it raising awareness of the signs and symptoms? GP attendance Are we seeing more people going to their GP with the symptoms promoted by the campaign, and is there any shift in the profile of patients presenting? Urgent referrals for suspected cancer Are we seeing more people referred urgently for suspected cancer, and is there any shift in the profile of these patients? Conversion rates Of those referred urgently for suspected cancer, how many actually turn out to have that cancer? Impact on investigations Are we seeing an increase in diagnostic investigation activity, or the length of time patients are waiting for tests? Cancer incidence and staging Are we seeing an increase in the numbers of patients diagnosed with cancer, and/or a shift towards earlier stage disease? 26. Local and Regional Blood in Pee Pilots Local pilot (i.e. no TV) Held in 3 pilot areas Avon Somerset and Wiltshire Nottingham Greater Manchester and Cheshire In total 18 PCT areas were covered by the pilots The pilots ran predominantly from January to end of March 2012 Regional pilot (including TV and direct mail) Covered the previous North of England Cancer Network footprint 13 PCTs (17 CCGs from April 2013) Tyne Tees and Borders TV region Activity ran from 14 January to 17 March 2013 27. Are people seeing the campaign and is it raising awareness? YES Regional Pilot Knowledge that blood in pee is a definite warning of kidney/bladder cancer increased significantly from 41% before the campaign to 65% after the campaign. This increase was noted in both men and women Encouraging response to the campaign, particularly by men, 69% of men found the advertising was relevant and 51% of men felt it told them something new After the campaign there was a significant increase in people saying they would see the GP the same day if they noticed any changes to pee or bladder habits, up from 18% to 27% 28. Are more people going to their GP with the symptoms? YES Local Avon, Somerset and Wiltshire was the only pilot to conduct formal GP attendance analysis. Overall there was a higher level of attendances in 2012 compared with 2011 for people presenting with campaign - specific symptoms (macroscopic haematuria), but no clear increase to correspond with the start of the campaign Regional Data extraction carried out late August with results due early Autumn 29. Purpose This slide set represents the interim findings from the analysis of data from 52 GP practices. Data from a further 444 GP practices has been included as a control group to compare activity against. It has been compiled specifically to provide an initial view on whether the campaign has had an impact or not on patient attendances. The study has been commissioned by NHS IQ The final report is due in September 2013. 30 30. To consider the impact of the Be Clear on Cancer blood in pee awareness campaign on patients visiting their GP with the symptoms highlighted in the campaign. No clear increase in attendances for the symptom highlighted in the campaign (macroscopic haematuria) following the launch of the campaign, based on the week by week profile. Activity during the campaign in 2012/13 was 25% higher compared with the previous year (0.18 additional visits per practice per week), however it was 9% higher compared with the eight weeks prior to the campaign the same increase was seen in practices outside the targeted area. Attendances for men increased by 15% within the targeted area during the campaign compared with the eight weeks prior to the campaign, whereas outside the area, attendances increased by 12%. 31 Summary Evaluation results Objective 31. Campaign vs control symptoms Practices within targeted area (aged 50+) % change in attendances from 2011/12 25% -22% -10% -14% -5% -30% -20% -10% 0% 10% 20% 30% 40% Macroscopic haematuria Neck pain Shoulder pain Knee pain UTI %changeinattendancesfrom 2011/12 Pre Live Post GP attendances for the control symptoms decreased by 12% during the campaign in 2012/13, compared with the previous year. Attendances for the control symptoms increased by 10% during 2012/13, compared with the eight weeks prior to the campaign. Attendances for macroscopic haematuria increased by 9%. 32 32. Are we seeing more people urgently referred for suspected cancer? YES Local 26% increase in 2WW urgent referrals for suspected urological cancer within the pilot area compared with an 18% increase in the control area Regional Analysis investigated the impact of the regional campaign, by considering the change in the number of urgent GP referrals for suspected urological cancer, from January April 2012 to January April 2013 The campaign appears to have had an impact on referrals for suspected urological cancers, with a 28% increase in the regional pilot campaign areas, compared to a 9% increase in the control areas Within the site-specific campaign areas, the increase in urological referrals was similar for men (27%) and for women (30%) NB* the urological cancer referral pathway covers several cancer types in addition to kidney and bladder. 33. Are we seeing an increase in diagnostic investigation activity? YES Local Cystoscopy figures for 18 PCTs covered by the local campaigns indicate a 5.9% increase (adjusted for working days) compared with the same months in 2011 Nottingham City PCT has a 19% increase Greater Manchester and Cheshire a 12% increase Avon, Somerset and Wiltshire a 2% reduction. Within this, some PCTs have seen increases while others have seen decreases There appears to be no adverse effect on waiting times following the local pilots Regional Results show strong growth in the number of cystoscopies in pilot PCTs in the period following the campaign. However, this series is affected by some large changes in activity for hospitals in the area (DM01 data) 34. Are we seeing an increase in numbers of patients diagnosed? Local Comparing Jan May 2011 to Jan May 2012 5.3% increase in the number of bladder or kidney cancers diagnosed following a 2WW urgent referral for suspected urological cancer within the pilot area Regional Initial analysis expected at the end of 2013 using the Cancer Wait Time database. This will cover the duration of the campaign and the period after the campaign, to assess any increases in the diagnosis of urological cancer 35. Conclusions so far Knowledge that blood in pee is a definite warning of kidney/bladder cancer increased in both men and women Campaign advertising seen as relevant and agreement that this was new information Increases in 2WW referrals and diagnostic investigations both locally and regionally From anecdotal feedback we have received throughout the two pilots (local and regional level) we have consistently heard that the campaign is well received by health professionals Need to sustain cancer awareness campaigns and other initiatives in the longer term to bring about desired behaviour change more widely and achieve better outcomes in cancer 36. What happens when it goes live voices from the regional pilot Suzanne Thompson (Clinical Network Manager) and Jo Cresswell (Chair of Urology Network Site Specific Group) What did we do? What did it feel like? A secondary care perspective Finally, planning for October 37. Clinical Engagement What did we do? Launch event & WebEx open to all stakeholders Modelling tool Education events aimed at primary care Briefing sessions for health champions/trainers Pharmacy engagement NECN website E-bulletin to all stakeholders Communication resource pack Resources: CRUK factsheets, Blood in Pee risk assessment tool 38. What did it feel like? We carried out a short online survey to find out how well informed people were about campaigns the impact people felt the campaigns had on services To inform delivery of similar work in the future. Online survey developed with support of Department of Healths BCOC central team and Cancer Research UK It was sent to 606 people. 108 (approx. 18%) responded Acute Trust Cancer Managers, Urology NSSG including urology nurses. It was also sent to GP practices (Managers) 39. A secondary care perspective What we did to prepare for the campaign The impact of the campaign Planning for the national campaign 40. What happens after referral? The haematuria clinic Consultation Examination Urine tests Flexible cystoscopy Imaging USS/CT scan 41. How did we prepare? Expected increase in workload Estimated from previous campaigns Increased haematuria clinic provision In advance or response to increased demand Unclear how many additional diagnoses expected Provision of elective surgery less predictable 42. A secondary care perspective - the impact 575 648 781 780 685 787 720 769 758 839 820 832 747 773 891 767 887 708 831 759 715 897 938 854 889 1025 1114 1022 1060 0 200 400 600 800 1000 1200 January February March April May June July August September October November December NECN- Two Week Wait Referrals- Urology 2011 2012 2013 4875 5594 6530 6043 5890 6645 6130 6420 6404 6346 6676 5907 5895 6475 7427 6245 7853 6480 7233 6936 6289 7920 7467 6248 6550 6802 7280 7177 7786 0 1000 2000 3000 4000 5000 6000 7000 8000 9000 January February March April May June July August September October November December NECN- Two Week Wait Referrals- ALL 2011 2012 2013 43. A secondary care perspective - the impact 0 50 100 150 200 250 300 350 02-Jan 09-Jan 16-Jan 23-Jan 30-Jan 06-Feb 13-Feb 20-Feb 27-Feb 05-Mar 12-Mar 19-Mar 26-Mar 02-Apr 09-Apr 16-Apr 23-Apr 30-Apr 07-May 14-May 21-May 28-May 04-Jun 11-Jun 18-Jun 25-Jun 02-Jul 09-Jul 16-Jul 23-Jul 30-Jul 06-Aug 13-Aug 20-Aug 27-Aug 03-Sep 10-Sep 17-Sep 24-Sep 01-Oct 08-Oct 15-Oct 22-Oct 29-Oct 05-Nov 12-Nov 19-Nov 26-Nov 03-Dec 10-Dec 17-Dec 24-Dec NECN- Two Week Wait Referrals- Urology January to December - by Week 2012 2011 2013 44. Observations Initial lag period with most notable increases from March onwards Perception that increased referral of Visible Haematuria (public awareness) Non-Visible Haematuria (Health Care Professional awareness) Pilot coincided with difficult period for bed occupancy (elective capacity affected) Key data how did increased referrals translate into increased diagnoses? 45. Finally, October Working with national partners to share our learning Informing key local stakeholders Engaging with new partners and developing relationships 46. Intelligence Report Likely impact of the 2013 national Blood in Pee awareness campaign on the NHS Dr David Halsall, Laura Bown and Katrina Walker Outcomes Analytical Team NHS England Presented by Chris Gibbins, DH 47. From the experience of the regional pilot, we are going to predict what might happen during the rollout of the national campaign City Hospitals Sunderland NHS Foundation Trust North Tees and Hartlepool NHS Foundation Trust South Tees Hospitals NHS Foundation Trust County Durham and Darlington NHS Foundation Trust Gateshead Health NHS Foundation Trust Newcastle upon Tyne Hospitals NHS Foundation Trust Northumbria Healthcare NHS Foundation Trust The regional campaign was held in the North East from January to March of this year 48. Incidence of kidney cancer has been rising over the past 10 years, particularly in the 20-64 age group, whereas the incidence of bladder cancer has been decreasing over the past 10 years, except in the older age group Source: NHS England Analysis of ONS Cancer Registrations data 0 500 1000 1500 2000 2500 3000 3500 4000 4500 5000 0-19 20-64 65-74 75+ 0-19 20-64 65-74 75+ Bladder Kidney Incidence of Bladder and Kidney Cancer in 2000 and 2010, projected to 2020 2000 2010 2020 49. 0 100 200 300 400 500 600 700 Apr May Jun Jul Aug Sep Oct Nov Dec Jan Feb Mar Emergency Admissions for Bladder and Kidney Cancer in England 2012 13 2011 12 2010 11 2009 10 Emergency admissions for kidney and bladder cancer have been falling year on year Source: NHS England Analysis of HES (2012/13 results preliminary) 50. 0 10 20 30 40 50 60 70 80 90 100 SurvivalPercentage One and Five Year Survival for Bladder Cancer 1 year survival 5 year survival Survival for kidney and bladder cancer is generally on the increase, with survival in kidney cancer matching survival for bladder cancer in recent years Source: NHS England Analysis of ONS data The fall in survival for bladder cancer is likely due to the increasing proportion of bladder tumours now being coded as uncertain 0 10 20 30 40 50 60 70 80 90 100 SurvivalPercentage One and Five Year Survival for Kidney Cancer 1 year survival 5 year survival 51. 9,170 new bladder cancer cases 8,500 new kidney cancer cases if 1.8%/year historical growth per year continues GP 62,000 direct access Kidney or Bladder Ultrasounds 28,500 direct access Chest/Abdomen CT scans 2WW Other Emergency 2,830 (32%) 2,120 (24%) 1,600 (18%) New cases* Bladder Kidney Other Outpatient 1,150 (13%) 1,640 (20%) 2,130 (26%) 2,050 (25%) 1,480 (18%) What impact will the Be Clear on Cancer campaign have on bladder and kidney cancer routes to diagnosis? Is this what we would expect to see in 2013? 290,000 Cystoscopies Source: NHS England Analysis of data from ONS, DiD, DM01 and *NCIN routes to diagnosis 2008 52. 9,170 new bladder cancer cases 8,500 new kidney cancer cases if 1.8%/year historical growth per year continues GP 2WW Other Emergency Other Outpatient How many lives would we expect to save if we switched half of emergency admissions to 2WW? 2WW GP - Other Emergency Other Outpatient 1 year survival Bladder Cancer 83% 79% 36% 77% 1 year survival Kidney Cancer 79% 80% 38% 82% Number of patients surviving 1 year now 3,650 3,375 1,355 2,100 Number of patients surviving 1 year after cutting emergency admissions by half 5,115 3,375 680 2,100 Difference 1465 - -675 - 790 lives could possibly be saved if emergency admissions are halved 53. A rise in ultrasounds in January, February and March and a rise in GP referred CT scans in January and February coincided with the regional Blood in Pee pilot but is this significant? Source: NHS England analysis of DiD dataset Regional Blood in Pee Pilot Regional Blood in Pee Pilot Each trust can expect to see an extra 6 ultrasound referrals and between 6-12 extra CT scan referrals per week during the campaign however, it is likely that not all of these will be for suspected urological cancer 54. Source: NHS England analysis of DM01 dataset Each trust should expect to see on average an extra 5 cystoscopy referrals per week over the campaign period Cystoscopy activity peaked in April after the campaign finished, although this was within normal variation. Waiting lists for the procedure increased slightly during the campaign but, again, this was within the normal limits. 55. Despite concern over trusts not being able to cope with an increased number of patients, the waiting times dont seem to have changed significantly relative to the past 2 years Source: NHS England Analysis of DM01 dataset 56. The increase in 2WW referrals during the campaign period looks consistent with the effect that we would have expected Source: NHS England Analysis of Cancer Waiting Times database Each trust should expect on average 6 extra referrals per week during the campaign period 57. During the months immediately after the campaign we saw an increase in the number of patients being treated for urological cancer after being referred through the 2WW pathway Source: NHS England Analysis of Cancer Waiting Times database 58. Looking at secondary care, there has been an increase in the number of patients having a diagnostic endoscopy of the bladder who have received a cancer diagnosis relative to trusts not covered by the regional pilot Source: NHS England Analysis of HES (2012/13 results preliminary) 59. We havent yet seen an increase in the number of operations relating to bladder and kidney cancer although this is likely to be due to data lags Source: NHS England Analysis of HES (2012/13 results preliminary) 60. In the pilot area, a 25% increase in 2WW referrals was seen over the short term. On average, each trust should expect to see an expect to see an extra six 2WW referrals per week. The consequence of this increased number of referrals did not, however, adversely affect diagnostic waiting times. Each trust should expect, on average, an extra 5 cystoscopy referrals, 6 ultrasound referrals and between 6-12 CT scan referrals each week during the campaign period. Given the relatively small proportion of bladder and kidney cancers that are diagnosed via the 2WW pathway, there are potentially significant gains to be made if patients are diverted from the emergency route to the 2WW route, contributing to the overall aim of saving 5,000 cancer lives. Summary: anticipated impact of Blood in Pee campaign 61. Sean Duffy National Clinical Director for Cancer NHS England Plans for early 2014 campaigns 62. February March 2014 National - Breast cancer in women over 70 Regional pilots: Oesophago-gastric Ovarian 63. Breast 70+ key message 64. Oesophago-gastric key messages 65. Ovarian key message 66. Aligning national and local delivery new accountabilities, organisations and ways of working. A panel with an opportunity to ask questions, chaired by Sean Duffy 67. Summary of next steps Sean Duffy, National Clinical Director for Cancer, NHS England