THAMES VALLEY AUDIT OF PATIENTS DIAGNOSED WITH CANCER FOLLOWING AN EMERGENCY PRESENTATION Dr Jennifer Yiallouros RCGP and CRUK workshop Brighton, March 2017 Acknowledgements Thames Valley Strategic Clinical Network commissioned the SEA project Project team: Cancer Research UK Jennifer Yiallouros Bridget England Louise Forster Marissa Morriss

Allyson Arnold Anna Murray Thames Valley SCN Bernadette Lavery Monique Audifferen Presentation outline Background Why was the audit done Methods How was the audit done

Sample description Which cases were audited Findings Using quotes from the respondents GP exercise Conclusions GP exercise Background Emergency presentation (EP) route England 20-25%

Survival Lower for those with EP Funders Thames Valley Strategic Clinical Network commissioned Cancer Research UK to undertake the audit Methods Identification of cases Secondary care identified cases diagnosed between April 2012 and March 2014 Quarter of 296 TV practices participated Data collection tool Significant Event Audits (SEA) for each case

What happened Why it happened Lessons learned Actions taken Qualitative analysis Sample description 172 SEAs Demographics Even split male (49%): female (51%) Average age 69 (range 17-96) Quarter still alive at time of GP SEA

Tumour sites Lung cancer (24%) Bowel cancer (22%) Pancreas (8%) The rest haematological, stomach, oesophagus . Findings Three emerging narratives EP was unavoidable Potential earlier diagnosis, but same prognosis Missed opportunities Route to diagnosis, prognosis and potential impact Better

Due to improvements in treatment unclear Prognosis Potential for improved patient and family experience Same EP unavoidable EP potentially avoidable Route to diagnosis

Due to improvements in underlying causal mechanisms Findings Underlying factors Tumour Person System and Health Care Professionals Factors affecting path to diagnosis Tumour (65%) 3% 23%

2% 9% 29% 10% 23% System (72%) Person (25%) Tumour factors T S P

No symptoms before EP Vague, atypical, non-red flag symptoms Complex symptoms Very quick deterioration Symptoms suggesting alternative diagnosis Symptoms prompting referral to wrong specialty / not timely No symptoms before EP Some cancers do present late and it can be impossible to find them earlier in their illness course.

(F, 86, Liver) Three people did not attend their GP Some had no relevant symptoms Incidental findings (15%) Reporting no symptoms Vague, atypical or non red flag symptoms We would like a 2WW referral for people who are unwell but we dont know which system they are unwell with. (F, 82, Brain & CNS)

Not associated with cancer Explained by current condition Pain associated with injury Where to send person Complex symptoms his admission for abdominal pain highlighted several medical issues that were unrelated to his eventual diagnosis of myeloma including a likely renal carcinoma, gallstones and an abdominal aortic aneurysm. (M, 75, Multiple Myeloma) Masked by co-morbidities Initial improvement with treatment

Multiple diagnoses Very quick deterioration Difficult case. From time of reported abnormal bowel habit 12th July to death 2nd Oct was 3 months so rapid deterioration. (M, 78, Pancreas) Little time to act Should set alarm bells ringing; 3 times and your in Symptoms suggesting alternative diagnosis It would appear that

GP3 was considering Osteoporosis as a cause for the fracture and pain. (F, 64, Multiple Myeloma) Existing condition New condition Symptoms prompting referral to wrong specialty / not timely Delays can arise when a 2WW referral results in a negative diagnosis for cancer and the patient is referred back to the GP. Often the patient and the GP are falsely reassured that there is no cancer (anywhere).

(M, 54, Multiple Myeloma) Incorrect specialisation Correct referral but EP preceded Non urgent referral Exercise 1 match the symptoms to the cancer site Exercise 1 match the symptoms to the cancer site Bowel Brain and CNS

Breast CUP & other Gynaecological Haematological Lip, oral cavity, pharynx Lung & other respiratory Male genital Upper GI Urological Exercise 1 match the symptoms to the cancer site - answer Person factors T S P

Symptom experienced for a long time Symptoms concealed / denied Being a difficult historian Declining medical advice Reluctance to come to GP surgery Failing to attend appointments Slow to re-present or go for investigations Reluctance to be tested Symptom experienced for a long time It is difficult to say if there

had been much delay on the part of the patient presenting with symptoms as no symptom duration is mentioned at the initial consultation (M, 45, Lung) Days Weeks Months Years Symptoms concealed /

denied Suspect patient was somewhat stoical and not entirely honest about symptoms, family subsequently revealed to me that she had been concealing how ill she was feeling at her appointments with me. (F, 68, Stomach) Stoical Not wanting medical intervention Not known Being a difficult historian Patient did not engage and ETOH meant that his presentation was

possibly masked and maybe medical practitioners whom he came into contact with did not fully take in to account/take him seriously due to the repetitive nature and presentation of ETOH. (M, 78, Lung) Mental health problems Lifestyle, ie alcohol Language difficulties Too many problems for one consultation

Declining medical advice Patient still autonomous and if declined referral with knowledge that symptoms could suggest cancer then inevitably will be delay in diagnosis. (M, 60, Oesophagus) Engagement with health care On occasions supported by GP due to frailty or co-morbidities Reluctance to come to GP surgery

Patient took no responsibility for his own health. All contacts were initiated by wife or son. (M, 78, lung) Anxiety about attending surgery Use of other services ie OOH Failing to attend appointments Patient was already referred but as due to his severe depression, he did not attend the appointments and was actually followed up by

the psychiatrist also. (M, 58, Bowel) Infrequent attendees Lifestyle / co-morbidities Referral not attended due to holiday Slow to re-present or go for investigations Safety netting was generally rather nonspecific and may have contributed to the delay in the patient returning. (F, 39, Bowel) To get doctor of choice Not appreciating

seriousness of condition / symptom Reluctance to be tested Consider a barium swallow or CT in patient who does not want an OGD. (M, 76, Stomach) Some people refuse tests Consider offering alternatives Findings Factors effecting path to diagnosis Tumour Person

System & Health Care Professionals Findings System and Health Care Professionals Secondary care Cancer community Events during the consultation Processes in the GP practice

Primary care Events during the consultation Examinations Communication This gentleman is not a native English speaker, he may not have understood the referral or use of hospital services. (M, 44, Mesothelioma) Medical histories Never weighedthis may be an

objective marker of deterioration. importance of taking clear history and starting afresh when dealing with patients who attend regularly (M, 78, Prostate) (M, 63, Bowel) Referrals This patient met criteria for two separate 2 week wait pathways, neither of these actually picked up

her cancer. We need to not be limited by specific pathways if we have concerns. (F, 63, Lung) Events during the consultation Follow-up & documenting Documentation is vital. This is not only for medico-legal reasons but also for best patient care and continuity of care if its not in the notes then it didnt happen. (F, 64, Multiple myeloma)

Sometimes cancer presents without classic symptoms and vigilance and diligence in the presence of abnormal results is imperative. Diagnostics When a patient presents repeatedly she needs to be clinically assessed again. (F, 68, Lung) (M, 73, Prostate)

Re-assessing the working diagnosis Normal CXR does not exclude cancer diagnosis (M, 87, Lung) Processes within the practice Holistic approach Responsibility At his previous practice there appeared to be no ownership of the patient or sense of urgency of referral.

(M, 28, Brain & CNS) Vigilance Mental health patients are just as likely as the general population to develop cancer but this can sometimes be forgotten (F, 47, Ovary) Although very unusual this clinical presentation reminded staff of the need to consider alternative diagnoses.

(M, 32, Bowel) Continuity of care Continuity leads to greater patient satisfaction and smoother management. (F, 67, Ovary) Processes within the practice Difficult cases Improved awareness of ways to share difficult cases and allow early reflection may assist in prompting earlier and speedier

referrals (F, 58, Brain & CNS) Then urgent CT scan still not reported after 10 days. Total delay; 33 days. We got no answer to our complaint letter. Better communication between all the DRs who saw this patient may have resulted in an earlier referral. (M, 82, Bowel) (F, 75, Lung)

Communication in the practice Communication with secondary care Clinical handover is weak point in medical practice (M, 75, Bowel) System factors T S P Secondary care Tests Ownership Referrals / pathway (incl. the role of guidelines) Communication Holistic approach

Availability of the test We could manage patients better if we had access to urgent USS (M, 63, Bowel) S Not all GPs have access to certain tests Not all GPs want access to all tests GP to decide whether to test first or refer straight away Appropriateness / adequacy of the test

It would appear that the chest xray was not the best investigation for her particular case but it is the standard available investigation in primary care to investigate ongoing respiratory symptoms, (F, 62, Lung) S PSA, CA125, ESR Some cancers not seen on CT scan or x-rays Timing of the test Following the upper GI endoscopy, the patient had been waiting almost another 4 weeks and still had not

received an appointment for an ultrasound scan. (F, 89, Liver) S How long a wait is acceptable Some tests in secondary care took too long Receiving the results of the test It also goes against the concept of the clinician requesting a test being responsible for following up the result.

(M, 42, Bowel) S Filing of the results by the practice Relaying results to the patient Interpretation of results Should have been followed up regardless as if abnormal needed treatment and if normal needed further investigation. (F, 72, Ovarian)

S False reassurance of normal test result When normal results should prompt further action Normal results can show a change in trend Response to abnormal results Abnormal results can lead to other condition

masking cancer Ownership of the patient S This patients CT scan was arranged by the hospital and should they therefore have followed up and investigated potential causes of vertebral collapse? (M, 74, Multiple Myeloma) After referral to secondary care

confusion over responsibility for chasing appointments / results How is responsibility handed back to GP when patient referred back to primary care. Referrals / pathways (including role of guidelines) S In April 2013, the patient had three appointments where malignancy was suspected but the site was unknown so a two week referral was delayed. (M, 78, Bladder)

Multiple referrals to different specialties can lead to delays Symptoms dont always meet 2WW criteria Sometimes guidelines are unhelpful / irrelevant Some cancers dont have guidelines Lack of clarity for some GP awareness Communication

S With primary care Some pathways are already different 2 years down the line, some are in evolution, but themes of handover and communication seem to persist! (F, 86, Bowel) Reports missing information / not received in timely manner Discharge summaries Referring 2WW bounced Choose and book system Within secondary care

Record keeping Between departments Holistic approach Difficulty lies within liaison with and follow up within secondary care, seen as separate issues, not addressing single cause, and reminded to think of bigger picture when presented with several new symptoms. (F, 52, Breast) S Specialties to think outside of their own specialty Atypical presentations of cancer Lifestyle factors

Co-morbidities Dont focus on the obvious problem - reassess Conclusions Not all emergency presentations can be prevented Some cases have missed opportunities Important to diagnose earlier survival patient experience There are many factors which impact the route to diagnosis

Exercise 2 prioritising actions Placing actions on impact / length of time parameters High Impact on early diagnosis Low Short Length of project Long Exercise 2 prioritising actions Placing actions on impact / length of time parameters

High Impact on early diagnosis Low Short Length of project Long Exercise 2 prioritising actions Placing actions on impact / length of time parameters High

Impact on early diagnosis Low Short Length of project Long Exercise 2 prioritising actions Placing actions on impact / length of time parameters High Impact on early diagnosis

Low Short Length of project Long Exercise 2 prioritising actions Placing actions on impact / length of time parameters High Impact on early diagnosis Low Short

Length of project Long making sense of qualitative data Contact details: [email protected]

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