1. Maureen Sayer Health Improvement Practitioner Cheshire and Merseyside Bowel Cancer Screening Programme

2. Bowel Cancer Aims To Identify and discuss the early signs of Bowel cancer To Identify and discuss the early signs of Bowel cancer To give an overview of the Bowel Cancer Screening Programme To give an overview of the Bowel Cancer Screening Programme

3. Bowel Cancer Symptoms Symptoms lasting 4-6 weeks need to be investigated Symptoms lasting 4-6 weeks need to be investigated Any clients with symptoms should be encouraged to see their GP Any clients with symptoms should be encouraged to see their GP

4. Bowel Cancer Symptoms Bleeding from the Rectum ( Back passage) Bleeding from the Rectum ( Back passage) Bright Red or Dark Black blood Found in or on Bowel Motion,toilet paper or toilet bowel Tiredness Tiredness Caused by blood loss Needs investigating

5. Bowel Cancer Symptoms Change of Bowel Habit Change of Bowel Habit Change from your normal pattern Constipation Decreased Bowel Motions Diarrhoea More frequent Bowel Motions May alternate

6. Bowel Cancer Symptoms Abdominal or Rectal Pain Abdominal or Rectal Pain Abdominal Lump Abdominal Lump Needs Investigating

7. Bowel Cancer Symptoms Nausea ( feeling Sick) Nausea ( feeling Sick) Unexplained loss of appetite Unexplained loss of appetite Unplanned Weight Loss Unplanned Weight Loss

8. Bowel Cancer Screening Programme Cheshire and Merseyside NHS North West

9. Bowel Cancer Screening Programme FOB testing will be offered to all men & women aged 60-69 - 2 yearly. FOB testing will be offered to all men & women aged 60-69 - 2 yearly. 70+ can request to join the BCSP but have to contact Regional Hub at Rugby on the 70+ can request to join the BCSP but have to contact Regional Hub at Rugby on the free phone 0800 707 60 60 Age Extension up to 75 in 2010 Age Extension up to 75 in 2010

10. Public Health Perspective Bowel Cancer is the third most common cancer in the UK Bowel Cancer is the third most common cancer in the UK Approximately 34,900 new cases p.a Approximately 34,900 new cases p.a It is is the second largest cause of cancer deaths in the UK (Cancer Research UK, 2005. Cancerstats). It is is the second largest cause of cancer deaths in the UK (Cancer Research UK, 2005. Cancerstats).

11. In 2004 approximately 16,100 people died from bowel cancer in the UK, 737 deaths within Cheshire & Merseyside In 2004 approximately 16,100 people died from bowel cancer in the UK, 737 deaths within Cheshire & Merseyside Life time risk of developing Bowel Cancer in the UK is about 1:18 for men and 1:20 for women Life time risk of developing Bowel Cancer in the UK is about 1:18 for men and 1:20 for women Public Health Perspective

12. Who is at risk of developing bowel cancer? Both men and women People who- – – Take little exercise – – Are overweight – – Have a diet high in red meat and low in vegetables, fruits and fibre

13. People with a family history (CRC Relatives) People with a family history (CRC Relatives) Inflammatory Bowel Disease Inflammatory Bowel Disease Genetics- Genetics- – Familial Adenomatous Polyposis (FAP)about 1% of cases – Hereditary Non-Polyposis Colorectal Cancer (HNPCC) about 2-5% of cases Who is at risk of developing bowel cancer? (continued)

14. Mental Health and Learning Disabilities Schizophrenia Schizophrenia Recent research shows that people with this condition are at increased risk of developing bowel cancer Learning Disabilities Learning Disabilities Increased risk is linked to obesity, poor diet, lack of physical activity,exclusion from screening programmes. Mortality is linked to late presentation of symptoms.

15. The risk of developing bowel cancer increases with age. The risk of developing bowel cancer increases with age. About 80% of people who get Bowel cancer are aged 60 and over About 80% of people who get Bowel cancer are aged 60 and over Who is at risk of developing bowel cancer? (continued)

16. In 2000 the Bowel Cancer screening Pilot began in Scotland (Dundee) and England (Rugby) In 2000 the Bowel Cancer screening Pilot began in Scotland (Dundee) and England (Rugby) Evidence from pilot studies showed that early detection through regular Bowel Cancer Screening has a significant impact upon overall survival rates Evidence from pilot studies showed that early detection through regular Bowel Cancer Screening has a significant impact upon overall survival rates BCSP can reduce mortality (deaths) by 16% in the population invited for screening BCSP can reduce mortality (deaths) by 16% in the population invited for screening Bowel Cancer Screening Pilot

17. Health Inequalities of the BCSP Pilot Men were less likely to participate in FOBt Lower uptake in deprived areas. Poor uptake in Black and Ethnic Minority groups particularly Muslims. Ethnic groups more likely to DNA before colonoscopy.

18. Other groups who may experience inequalities – – Learning disabilities/ difficulties – – Blind and Visual impairment – – Deaf – – People with mobility problems – – Illiterate – – Mental illness – – Travellers – – Homeless – – Prison population Health Inequalities of the BCSP

19. Responsibility for the BCSP Cheshire & Merseyside NHS North West have the lead responsibility for BCSP initially. Thereafter PCT’s will commission the programme. Cheshire & Merseyside NHS North West have the lead responsibility for BCSP initially. Thereafter PCT’s will commission the programme.

21. Operationally driven and managed by 1 host Trust.( Aintree) This is the local BCSP administration centre. Operationally driven and managed by 1 host Trust.( Aintree) This is the local BCSP administration centre. Endoscopy nurse-led screening assessment clinics (community) Endoscopy nurse-led screening assessment clinics (community) Agreed Model

22. SHA BCSP Statistics Screening population 327,683 Screening population 327,683 Assume 60% uptake based on pilot figures = 196,610 of which, Assume 60% uptake based on pilot figures = 196,610 of which, Approximate 2% will have a positive FOBt = 3,932 of which, Approximate 2% will have a positive FOBt = 3,932 of which, 11% of FOBt positive patients will have cancer =433. 11% of FOBt positive patients will have cancer =433. 35% will have polyps requiring surveillance =1376 35% will have polyps requiring surveillance =1376

23. Proposed organisation HUB 5 Programme Hubs across England, based on IT Local Service Providers (LSP) undertaking call/recall and lab functions 1 Programme Hub for approx 20 screening centres Overarching Structure:

24. Role of HUB To Manage call and recall for the screening programme To Manage call and recall for the screening programme To provide a telephone help line for people invited for screening To provide a telephone help line for people invited for screening To dispatch and process test kits To dispatch and process test kits Send results letters to participants and notify GP Send results letters to participants and notify GP Book the first appointment at a nurse led clinic for patients with an abnormal test result Book the first appointment at a nurse led clinic for patients with an abnormal test result Coordinate Quality assurance activities Coordinate Quality assurance activities

25. Model in brief Invitation letter is sent to participant from Rugby dispatch centre (HUB). Invitation letter is sent to participant from Rugby dispatch centre (HUB). Participants can opt out of the BCSP by contacting Rugby on the free phone 0800 707 60 60. Participants can opt out of the BCSP by contacting Rugby on the free phone 0800 707 60 60.

26. National Hub National hub send invitation to screening letter One week later an FOB screening kit which includes leaflets, sample sticks and a foil lined envelope are dispatched

27. Faecal Occult Blood Testing Kit Participants smear the stool sample onto the 2 Squares in the 1 st flap indicated on the kit. This is repeated on 2 further days until all 6 Squares are completed Completed kit is returned by post to Rugby within 2 weeks of the 1 st sample being smeared on the kit (foil-lined envelope supplied) Completed kit is returned by post to Rugby within 2 weeks of the 1 st sample being smeared on the kit (foil-lined envelope supplied)

28. Results  Negative result  Unclear Result (1-4 of the squares are positive)  Spoilt Kit  Technical Failure  Positive ( abnormal) Result

29. Screening Centres They will provide nurse led clinics for patients with an abnormal test result They will provide nurse led clinics for patients with an abnormal test result Arrange colonoscopy appointments for patients with an abnormal test result Arrange colonoscopy appointments for patients with an abnormal test result Arrange alternative appointments for patients in whom colonoscopy has failed Arrange alternative appointments for patients in whom colonoscopy has failed Ensure appropriate follow-up or treatment for patients after colonoscopy Ensure appropriate follow-up or treatment for patients after colonoscopy

30. Screening Centres Provide information about the screening programme for the local health community Provide information about the screening programme for the local health community Promote the screening programme to the Promote the screening programme to the general public in their locality Provide information and support for local people in completing the FOB test(on referral from the programme hub Provide information and support for local people in completing the FOB test(on referral from the programme hub

31. Appointment arranged at Endoscopy Nurse screening assessment clinic if the FOBt is positive. The participant will receive: Counselling A health questionnaire Information Consent Preparation for the procedure Bowel Cancer Screening-The colonoscopy Investigation (leaflet) Screening Journey

32. Screening journey (Continued) Referred to screening provider unit for colonoscopy Follow-up dependant on procedure results – – Normal, sent a BCSP kit in 2 years – – Polyps, surveillance by BCSP – – Cancer detected cases referred to local Multi Disciplinary Team (local Cancer Team)

33. Cheshire & Merseyside commissioned by National office Aims to explore the sensory impaired people’s understanding of the process Identify actual or perceived difficulties Identify coping strategies to help them participate Qualitative study; made use of focus groups and interviews Sensory Impairment Research

34. Engage support organisations to ensure wider spread of information Training ambassadors within deaf community Establish text phone and email helpline Target isolated individuals Easy to use language in leaflets More pictures in leaflets Sensory Impairment Research – Findings

35. Consider new design of FOBt kit Send sampling pots with FOBt kit Sensory Impairment Research – Findings

36. Make public the research report National office to review findings New strategies to be tested out in a follow- on project Sensory Impairment Research – Next Steps

37. Contact Details Maureen Sayer Maureen Sayer Health Improvement Practitioner maureen.sayer@aintree.nhs.uk 0151 529 3035