Bowel Cancer & Bowel Cancer Screening Education and Awareness Sessions Maureen Sayer Health Improvement Practitioner Cheshire and Merseyside BCSP

AIMS and Outcomes: Increased awareness of the signs and symptoms of bowel cancer Increased understanding of the Bowel Cancer Screening Programme (BCSP) Increased knowledge on how to support your client group in relation to the BCSP Increased ability of staff to act as health advocates to their client group

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, Cancerstats). It is is the second largest cause of cancer deaths in the UK (Cancer Research UK, Cancerstats).

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

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

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)

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)

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.

Bowel Cancer What are the signs and symptoms of bowel cancer? Practical Exercise! Then feedback from groups

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

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

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

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

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

Bowel Cancer Screening Programme Cheshire and Merseyside NHS North West

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.

Responsibility of the PCT Representative identified to attend Primary Care and Health Inequalities Group Representative identified to attend Primary Care and Health Inequalities Group Identify suitable venues for the Nurse Led Clinics Identify suitable venues for the Nurse Led Clinics Develop a Service Level Agreement with the Bowel Cancer Screening programme at Aintree Develop a Service Level Agreement with the Bowel Cancer Screening programme at Aintree Develop Patient Information leaflets Develop Patient Information leaflets

Responsibility of the PCT Publicise Bowel Cancer Screening programme Publicise Bowel Cancer Screening programme Identify Groups who may experience Health Inequalities Identify Groups who may experience Health Inequalities Hold education sessions for PHCTs Hold education sessions for PHCTs Information provided on PALs telephone service Information provided on PALs telephone service

Cheshire & Merseyside 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 = % of FOBt positive patients will have cancer = % will have polyps requiring surveillance = % will have polyps requiring surveillance =1376

Knowsley BCSP Statistics Screening population 17,000 Screening population 17,000 Assume 60% uptake based on pilot figures = 10,200 of which, Assume 60% uptake based on pilot figures = 10,200 of which, Approximate 2% will have a positive FOBt = 204 of which, Approximate 2% will have a positive FOBt = 204 of which, 11% of FOBt positive patients will have cancer =22 11% of FOBt positive patients will have cancer =22 35% will have polyps requiring surveillance =71 35% will have polyps requiring surveillance =71

Bowel Cancer Screening Programme FOB testing will be offered to all men & women aged yearly. FOB testing will be offered to all men & women aged 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 FREEPHONE: Age Extension up to 75 in 2010 Age Extension up to 75 in 2010

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:

Role of Midlands and North West Programme 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

Midlands and North West Programme Hub Invitation letter is sent to participant from Hub. Invitation letter is sent to participant from Hub. Participants can opt out of the BCSP by contacting Hub on the free phone – Participants can opt out of the BCSP by contacting Hub on the free phone – One week later an FOB screening kit which includes leaflets, sample sticks and a foil lined envelope are dispatched

Screening Centres (University Hospital Aintree) 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

Screening Centres (University Hospital Aintree ) They will provide nurse led clinics for patients with an abnormal test result at Prescot PCRC They will provide nurse led clinics for patients with an abnormal test result at Prescot PCRC Arrange colonoscopy appointments for patients with an abnormal test result at either the Royal Liverpool University Hospital or University Hospital Aintree Arrange colonoscopy appointments for patients with an abnormal test result at either the Royal Liverpool University Hospital or University Hospital Aintree 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

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 Hub within 2 weeks of the 1 st sample being smeared on the kit (foil-lined envelope supplied) Completed kit is returned by post to Hub within 2 weeks of the 1 st sample being smeared on the kit (foil-lined envelope supplied)

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

Results Patient informed of Faecal Occult Blood Test Patient informed of Faecal Occult Blood Test results by post results by post Colonoscopy: patient informed of results on Colonoscopy: patient informed of results on the day the day Information about polyps relayed to patient by Information about polyps relayed to patient by telephone clinic or clinic appointment telephone clinic or clinic appointment GP informed of all results, non-responders GP informed of all results, non-responders and DNAs and DNAs

Screening journey Appointment arranged at Nurse – led clinic (Prescot PCRC) for FOBt positive patients. The patient will receive: Counselling A health questionnaire Information Consent Preparation for procedure BCSP – The Colonoscopy Investigation Leaflet

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)

Health Inequalities of the BCSP Pilot Men were less likely to participate in FOBt Lower uptake in deprived areas. Black and Racial Minority Communities less likely to participate

Potential barriers within BCSP? Mental Health? Mental Health? Learning disability? Learning disability?

Barriers for patients with Mental Health problems Lack of awareness about the benefits of screening Lack of awareness about the benefits of screening Poorer knowledge of health topics Poorer knowledge of health topics Low self esteem Low self esteem Lack of motivation Lack of motivation Difficulty in accessing services Difficulty in accessing services Practical issues for completion of the Faecal Occult Blood Test Practical issues for completion of the Faecal Occult Blood Test

Support individuals with a Mental Health problem to: Support individuals with a Mental Health problem to: – Make an appointment with the GP or Practice Nurse at the earliest sign of ill health or disease. – Inform and discuss with the GP or Nurse any signs or symptoms of ill health. – Attend their annual health check at their GP surgery. – Understand what the screening process entails: using easy read format. How can you help people with Mental Health problem overcome these barriers?

Barriers for patients with Learning Disabilities/Difficulties Communication Communication Recognition of ill health is often difficult. Signs and symptoms for bowel cancer not always recognised Recognition of ill health is often difficult. Signs and symptoms for bowel cancer not always recognised Literacy level Literacy level Resources / lack of pictorial easy read information Resources / lack of pictorial easy read information Practical issues for completion of the Faecal Occult Blood Test Practical issues for completion of the Faecal Occult Blood Test

Barriers for patients with Learning Disabilities/Difficulties Lifestyle, behaviours and disengagement Lifestyle, behaviours and disengagement Attitudes of health professionals & NHS administrative procedures. Client group often excluded from screening by Primary Health Care Teams Attitudes of health professionals & NHS administrative procedures. Client group often excluded from screening by Primary Health Care Teams Perceived difficulty obtaining consent Perceived difficulty obtaining consent Family members/carers may not have the skills & knowledge needed about disease Family members/carers may not have the skills & knowledge needed about disease

Support individuals with a LD to: Support individuals with a LD to: – Make an appointment with the GP or Practice Nurse at the earliest sign of ill health or disease. – Inform and discuss with the GP or Nurse any signs or symptoms of ill health. – Attend their annual health check at their GP surgery. – Understand what the screening process entails: using easy read format. – Access support from a LD nurse if required. How can you help people with LD’s overcome these barriers?

Merseyside and Cheshire Early Detection & Prevention Strategy Healthy Communities Cancer Collaborative New Developments

DVD Developed to meet the needs of Black and Racial Minorities Black and Racial Minorities Deaf and Hard of Hearing People Deaf and Hard of Hearing People Low Literacy Low Literacy Learning Disabilities Learning Disabilities

New Developments Pictorial Easy Read leaflet Awareness raising sessions Anticipatory Care Calendar

Reduce health inequalities. Reduce health inequalities. Provide a sound clinical governance and critical care review mechanism. Provide a sound clinical governance and critical care review mechanism. Provide care pathways that lead to action. Provide care pathways that lead to action. Improve communication with the multidisciplinary team. Improve communication with the multidisciplinary team. Standardise information/documentation. Standardise information/documentation. Purpose of the Anticipatory Care Calendar

Ensure that the legal requirements for documentation are met. Ensure that the legal requirements for documentation are met. Record patterns in behaviour and symptoms which can be visualised more easily using the monthly chart so that alterations in the client conditions can be viewed on more than one health variable. Record patterns in behaviour and symptoms which can be visualised more easily using the monthly chart so that alterations in the client conditions can be viewed on more than one health variable. Reduce diagnostic overshadowing Reduce diagnostic overshadowing Record accurate screening Record accurate screening Provide learning opportunities between teams caring for clients. Provide learning opportunities between teams caring for clients. Purpose of the Anticipatory Care Calendar

Any Questions?

Contact Details Maureen Sayer Maureen Sayer Health Improvement Practitioner Health Improvement Practitioner Lara Boddy Lara Boddy Cancer Screening Coordinator Cancer Screening Coordinator