Diagnosing Cancer Earlier

1. Diagnosing Cancer Earlier Professor Mayur Lakhani CBE FRCGP FRCP Cathy Hughes, Cancer Lead Edana Minghella, Project Manager Mayur.Lakhani@eastmidlands.nhs.uk

4. What we have done to understand the risks of cancer delay • Early priority for NPSA • Analysis of Patient Safety Incidents reported to the NPSA • Workshops using RCA/Fishbone • Focussed literature review • Work in progress, aim to finish Discovery Phase by March 09 and publish initial report

5. Where do risks arise from? • +++ Patient Factors – symptom misattribution • +++ Doctor (GP) Factors – the diagnostic process (assessment, vigilance and failure to fast track) • +/++ System factors – waiting for tests and treatment

6. The genesis of risk: emerging themes Dysfunctional communication Variable quality of general practice Organisational culture Test ordering, results management and follow up Fragmentation of care Failure to follow established procedures and guidelines - failure to fast track

7. The patient experience

8. Analysis tools Data Cleansing NRLS Database Reports & Analysis How are PSIs reported? 99% upload from your local trust reporting system eform

9. General Practice and NRLS • Only contribute to O.4% total incidents in NRLS • General Practice has a separate system called Significant Event Auditing – informal, intra practice educational • QOF - 12 over 3 years including new cancer diagnosis • Huge variation in quality of SEA, little sharing of information, and low level of reporting into PCO, LRMS and NPSA NRLS • Greater standardisation

10. Histology Communication Radiology reporting Preparation for tests Clinical assessment Test waiting times Surgical cancellations Administrative errors Test results not reported, reported incorrectly or reported after a long delay (many cases) Misfiling (many cases) Categories from NRLS- mainly secondary care data

11. Test waiting lists First seizure 8th January; seen by GP 10th January; urgent neurology referral 11th January. Seen By Dr 19th March - MRI and fast track EEG requested; MRI 26th April - left hemisphere mass. results received by neurology Dept 15th May . Given to Dr 4.6.07; period of 5 months to diagnose brain tumour.

12. Communication 28 year old woman was seen in out patients on 5th Oct as a new patient. No notes were available so the consulting doctor took notes on a pad and asked the secretary to make up a set of notes. The doctor ordered a biopsy, the results of which showed CIN3. A letter was dictated and this was left with the secretary to type and make a follow up appointment. The GP contacted the doctor on 9th June the following year to ask whether the patient had had any treatment; when the doctor investigated, it emerged the patient had not been seen since the OPA.

13. Examples of guidelines not being followed (i.e. not fast tracked) • Iron Def Anaemia given parentral iron, not investigated = Bowel Cancer • Excision of Skin lesion, sample not sent for biopsy = Skin cancer • Recurrent rectal bleeding attributed to haemorrhoids = Bowel Cancer • Dealing with diagnostic ‘overshadowing’, Cancer in the patient with co-morbidity (e.g. anaemia in chronic disease)

14. The case of children and young people – real life stories • 93% of 16 – 24 years olds with cancer and a similar proportion of parents of children with cancer surveyed by CLIC Sargent in 2007 said that increasing GP awareness of cancer to help speed up diagnosis was really important • Rare/Less common cancers • Generic solutions and tumour specific

15. Practice Culture/Disempowered Pts. • Several visits to GP with same symptoms not noticed or acted upon • Patients return time and again and go to A&E but still don’t get help – may not complain or ask for a second opinion; accept a ‘passive’ role • Not enough time in the consultation to let the patient talk • Attitude: Example of one woman who felt she was ‘fobbed off’ –’neurotic’, ‘menopausal’ • Negative investigations but persistent symptoms

16. The approach to improvement • Do not forget the positive stories!! Celebrate success • Astute GPs and patients (example) • GPs are part of the solution (but need to do some things better) • Important principle in patient safety: avoid blame and judgement, focus on improving systems • Medical errors are usually system related and preventable

17. Context of Transformational Change and better models of care • HQCFA (Darzi) particularly fairness • World Class Commissioning • Doctor Quality – Appraisal and revalidation • Organisational Quality – CQC –risk management • Patient empowerment /Health space • Medical Leadership and integration of care • Quality Metrics and Accounts/ CQUIN

18. Co-produce safety with patients

19. Next Steps - We need results quickly 1. Patient Safety Campaign (‘Could it be cancer, doctor ?’) 2. Measurement and Benchmarking: Patient Safety Indicator of Total Delay 3. Better reporting and learning including - Significant Case Review (MDT reviews of T3/T4 tumours. RCGP National Audit in Primary Care 4. Define standards for the Education and Training in Cancer for GPs – Appraisal 5. Better models of care and push the boundaries of fast track e.g. 3 days – Improved primary care access to Imaging –Primary Care Oncology Initiative 6. Standards for Test ordering, reporting and management (CQC)