Bowel cancer screening in Learning Disability patients in Salford

1. Bowel cancer screening in Learning Disability patients in Salford Nadia Awan (CT2)Rupa Gupta (ST5)Nasim Chaudhry (Consultant Psychiatrist)

2. Bowel (colorectal) cancer • Bowel cancer is the third most common cancer in the UK • ~ 35,000 new cases diagnosed per annum • second most common cause of cancer death • 16 100 deaths per annum • lifetime risk of being diagnosed with bowel cancer is around M- 1 in 18 F- 1 in 20 • Half the people diagnosed, survive for least 5 years after diagnosis

3. Risk Factors • AGE – more than 80% occurring in those aged > 60 years old • SEX- M:F similar risk upto 40 years old, then risk M>F • DIET – if overweight, high red meat diet, low fruit & veg and low in fibre, all increase risk • FAM Hx- increase risk if one first-degree relative dx before 45 or two relatives at any age • Genetic- Familial adenomatous polyposis (FAP) or Hereditary non-polyposis colorectal cancer (HNPCC)

4. Process • Initial invitation letter and faecal occult blood test (FOBt) kit sent to those eligible • kit comes with full instructions, cardboard sticks with which to collect the samples from bowel motions and a freepost envelope • Kit returned for analysis at the programme hub laboratory • The kit must be returned within 14 days of the first sample being taken to ensure that a result can be obtained.

5. National Bowel Cancer Screening Programme • Began in July 2006, fully rolled out by 2010 • Programme hubs operate a national system to send out faecal occult blood test kits (FOBt) • screening centres provide endoscopy services and specialist screening nurse clinics for people receiving an abnormal result • Those requiring treatment are referred to local hospitals

6. AIMS of Audit • As per the NHS Bowel Cancer Screening Programme: • aim to reduce mortality from bowel cancer • ensure informed decisions • equal access for those with disabilities • Audit to look at: • screening uptake rates for faecal occult blood testing (FOBt) • understanding of bowel cancer screening in patients with LD and those who look after them to ensure informed decisions are made

7. Standards 1. At least 60% of patients eligible from the LD population should undergo faecal occult blood screening 2. Patients should have understanding checked and be given appropriate information given prior to screening 3. Patients should have an informed decision made as to whether to participate in the programme 4. Patients should have assistance in making decisions for screening

8. Method • Audit registered with GMW mental health trust • 111 patients living in Salford, over the age of 65 with LD identified • Patients arranged by service/accommodation type to ensure each type included in sample • This included supported tenancy, permanent residental care, sheltered housing, living alone, living with family/carer, adult placement, permanent nursing • Unknowns were excluded (13) • Every other patient was selected, leaving a sample of 49 patients for audit

9. Easy read questionnaires were written with help from the healthcare facilitator and Total communication lead in Salford Learning Disability service. • 10 questions constructed in easy to understand language • Accompanying images taken from ‘An easy guide to Bowel Cancer Screening’, NHS Cancer Screening Programme Information Resources • Simple yes/no questions and free text

10. Example question • Have you ever had a bowel screening kit sent to you in the post? YES / NO /CANNOT REMEMBER • If you decided not to have the screening, why was this? Write your answer here

11. Cont… • A few questionnaires were sent out through service providers with an accompanying letter • due to poor return patients were telephoned • Questionnaires were completed over the telephone with patients and carers

12. Results • 41/49 questionnaires completed • 3 were not returned in the post • 4 not able to contact via telephone • 1 patient RIP during audit

13. 1. Screening kits sent in the post?

14. 2. Samples returned in the post

15. 3. Information before deciding to take part • Staff decision as patient felt to lack capacity

16. 4. Given easy read information • 2 patients were able to read information given in packs

17. 5. If decided against, reason why • Patient had breast screening which required mastectomy therefore fears result • Patient not felt to have capacity therefore discussed with GP • Patient agreed, but never passed stool in container for staff • Staff felt patient lacks capacity and would struggle to obtain sample • Patient scared of hospital and does not want anything to do with doctors

18. 6. Understanding of test • Only 1 patient felt they fully understood the test • For 3 patients it was not felt applicable • 2 patients did not understand the test at all

19. 7&8. Help from someone else, who • 2 patients were helped by carers • All other patients reported help from staff in deciding and carrying out the test

20. 9. Patient’s understanding of the reason for the test • Patient would not be able to understand • Not able to remember, little understanding • To make sure everything is alright • Would not be sure, would forget • Unsure. To make sure you are ok? • Would not know • To test what is going on in bowels-?cancer • Bowel cancer • Investigation leads to hospital ?cancer • Its for cancer

21. 10. Do you know the result • Out of 8 patients who sent the sample: • 62% had a negative result (5) • 13% had a positive result, which following colonoscopy was normal (1) • 25% were unsure of result (2)

22. Summary • 34% of sample received a FOBt kit • Of them, 57% returned samples • 42% of patients had the test explained verbally by staff, 29% had no explanation • None of the patients were given easy read information • Many patients did not have the investigation because staff felt they lacked capacity, one patient was discussed with the GP • 57% felt they had a reasonable understanding of the test • Staff and carers helped explain and carry out the test

23. Discussion • Uptake of screening in patients with LD in Salford is lower than the recommendation • The most common reasons for not testing appear to be due to decisions being made by carers and support staff • This could be improved through education and raising awareness • Most patients only understood the reason for test- ‘a bit’ • This may have improved if they were presented with easy read information

24. Limitations • For the purpose of this audit, we were relying on staff who may not have been involved in the test • 61% said they did not receive the test, however is it possible that it was forgotten or dealt with by other staff • A more accurate representation could be made from GP records • As the questionnaire was primarily over the phone, and patients were not spoken to directly, the patient understanding may not be as representative • Arranging interviews with the patient directly could counter this, although it is time consuming

25. Recommendations • Providing an easy read information leaflet for patients explaining the procedure and reasons for tests • Raise awareness of easy read leaflets available through ‘cancer screening information resources’-explaining how to perform the test • Training and education of carers and support workers • Incorporating cancer screening test into the annual physical health review • Re-audit following recommendations, with larger sample, using GP information and interview with patients.

26. References • Guidance for public health and commissioners , Public Health Resource Unit BCSP, Publication No 3, February 2008 • http://www.cancerscreening.nhs.uk/bowel/publications/index.html • http://www.cancerresearchuk.org/ • An easy guide to bowel cancer screening, November 2008 • Bowel cancer screening: the facts, January 2012

27. Thank you • Any questions?