1. Cancer Diagnostic Pathway Audit Report North of England Cancer Network

2. TitleNorth of England Cancer Diagnostic Pathway Audit Report ReferenceFinal Report National GP Audit NECN VersionRelease 2 Final V04 Date22/11/10 AuthorParry Lothian Consultancy Change History 6/10/10 – V01For initial discussions with GP Cancer Leads 4/11/10 – V02Final Draft for comments to GP Cancer Leads 12/11/10 – V03Final Report for submission to client 22/11/2010 – V04Final Report Release 2 - following client discussion North of England Cancer Network Cancer Diagnostic Pathway Audit2

3. Contents 1.Introduction 2.Context and Background 3.Methodology The Approach Practice Participation The Participating Practices Practice Locations and Population Tools, Parameters and Timelines 4.The Audit Process 5.Findings Overview Key Factors Base Information Attendances Referral Detail and Processes Diagnosis Possible Avoidable Delays 6.Practice Learning and Actions 7.Recommendations 8.Acknowledgements North of England Cancer Network Cancer Diagnostic Pathway Audit3

4. Introduction 4

5. Introduction This report describes the process and outcomes from the North of England Cancer Networks’ participation in the National GP Cancer Audit. This is the third element of work progressed under the umbrella of National Awareness and Early Diagnosis Initiative (NAEDI). The report highlights the specific findings, the issues raised and the local actions taken to improve specific elements of the care pathway both at practice level and within interfaces with secondary care. It makes recommendations on the transference of learning, local communication and further work that will require action. Initial presentation in Primary Care Reducing the time delay and waste in the patient journey to support earlier cancer diagnosis Diagnosis The second project on NAEDI The third project on NAEDI – the subject of this report Cancer in Primary Care - the initial NAEDI work 5North of England Cancer Network Cancer Diagnostic Pathway Audit

6. Context and Background North of England Cancer Network Cancer Diagnostic Pathway Audit6

7. Context and Background Building on the progress from the NHS Cancer Plan, the Cancer Reform Strategy 2007 identified one of the key areas for action was diagnosing cancer earlier. From this main theme the National Awareness on Early Diagnosis Initiative (NAEDI) was launched, one element of which, was to reduce delays in primary care. This forms the back drop to the work in the North East. Cancer in Primary Care - the initial NAEDI work The second project on NAEDI As part of the NAEDI to promote timely diagnosis of cancer, a national significant event audit of cancer diagnosis in primary care was commissioned and reported in 2009. This audit in the north east of England was carried out by a collaboration between Durham, Glasgow and Dundee Universities. This primary care audit study was specifically to gain insight into the events that surround the diagnostic process for two groups in cancer (lung cancer and cancer affecting teenagers and young adults). The study demonstrated appropriate recognition and referral for both cancer groups. Where recognition had taken longer there were often reasonable explanations – for lung cancer these related to chest x-rays reported as normal, patient choice factors or presentations complicated by co-morbidity. There was also system and practitioner issues and the use of guidelines highlighted in the findings. The full report can be found on www.cancernorth.nhs.uk From the initial study above a further project was initiated by NHS County Durham and Darlington. This project was to work more closely with primary care to identify, analyse and find solutions to issues that prevented quick diagnosis as identified in the significant event audit (SEA). As NHS North East were already well advanced in their application of the Virginia Mason Production System the proposal suggested that this vehicle was used to carry out this ‘new ‘work building on from and using the initial findings for lung cancer. This proposal was supported by the National Cancer Action Team and was extended across the Cancer Network to include NHS South of Tyne and Wear. Funding from the National Cancer Action was made available and planning began in November 2009. The initial report on this work was completed in April 2010. Durham University, School of Medicine and Health has evaluated the Virginia Mason Production System as it is applied to the primary care work. This study will be available later in 2010. 7North of England Cancer Network Cancer Diagnostic Pathway Audit

8. Context and Background continued Building on the progress from the NHS Cancer Plan, the Cancer Reform Strategy 2007 identified one of the key areas for action was diagnosing cancer earlier. From this main theme the National Awareness on Early Diagnosis Initiative (NAEDI) was launched, one element of which, was to reduce delays in primary care This forms the back drop to the work in the North East. The third project on NAEDI – the subject of this report The North of England Cancer Network are now building upon the previous NAEDI work by participating in the National GP Audit developed by the Royal College of General Practitioners and the National Cancer Action Team. An audit tool supports this work and is called the Diagnostic Pathway Template. The aim of this audit is To identify any delays in patient pathways To identify any potential groups of patients or tumour types which are particularly vulnerable to delay To use the findings to plan interventions to improve early diagnosis across the North of England Cancer Network To ensure that the findings inform the commissioning intentions for each PCT To inform and supply information to the National Database Overall the aim is to build on current good practice and inform service improvements thereby ensuring that individuals with symptoms suspicious of cancer are referred appropriately and early. North of England Cancer Network Cancer Diagnostic Pathway Audit8

9. Methodology 9

10. Phase 2 – Planning and Recruiting Phase 3 – Date Collection and Cleansing Phase 4 – Data Analysis and Reporting Phase 1- Project Initiation Output Audit by North of England Cancer Network and Network Primary Care Group. Aims and objectives of the audit agreed. Audit parameters agreed. External Consultant support agreed and recruited. Timelines and GP practice responsibilities agreed Scope of practice participants agreed. Remuneration for practices agreed. Project Group and Activity Plan developed. Briefing Pack and Practice agreement developed. GP Cancer Leads identify and recruited practices Output Each participating practice was given from June to October 2010 to complete the audit template. The records were validated and the data cleansed and amendments agreed with each practice audit lead. Each practice was given a further month to produce a report of their findings and any action taken. The data was analysed and the main findings agreed with the GP Cancer Leads. Guidance supplied by Professor Greg Rubin, Wolfson Institute, University of Durham The report developed and signed off in November 2010. Terms of Reference for Project Group. Audit parameters and timelines. Project Plan Briefing pack for participating practices and GP Cancer Leads Completed, consolidated and validated audit template A practice report from each participating practice Data analysis Final Report Methodology – The Approach 10 North of England Cancer Network Cancer Diagnostic Pathway Audit

11. The Cancer Network was keen to ensure involvement from Primary Care in all localities and therefore from the outset of the project the GP Cancer Network Leads were involved in the decision making around the project, its implementation and the Practices to be recruited Methodology – Practice Participation The Practices GP Practice remuneration GP Practice roles and responsibilities GP Practice participation 24 GP Practices were recruited from across the five localities in the NECN. There was no systematic recruitment based on agreed criteria. Practices were approached based on the knowledge they would cooperate, they would find the capacity to participate and would meet the timelines. The Practices were asked to identify a lead for the practice who would coordinate the completion of the audit and ensure the timelines were met. Each Practice also agreed to conduct a practice meeting/learning event to discuss the audit, identify key areas for improvement and produce an action plan for implementation. This report was shared with the Cancer Network and formed part of the audit process. Each practice was to receive £500 + £30 per patient record audited, completed and validated. Payment was made retrospectively upon completion of the template with validated records and the production of their practice report template. Participating Practices varied in size from small 20,000 registered list size. There was a mixture of both rural and urban practices. 11North of England Cancer Network Cancer Diagnostic Pathway Audit

12. Methodology – The Participating Practices Participating Practices Dr Cloak and Partners Sunderland Springwell Medical Group, Sunderland Glenpark Medical Centre, Gateshead Bridges Medical Practice Gateshead Coquet Medical Group, Morpeth Northumberland Biddlestone Health Group, Newcastle upon Tyne Lane End Surgery Newcastle upon Tyne Harbottle Surgery Northumberland Branch End Surgery, Stocksfield Northumberland The Linthorpe Surgery Middlesbrough Havelock Grange Practice Hartlepool Tennant Street Practice Stockton Yarm Medical Practice Yarm Blackhall and Peterlee Practice Peterlee Jupiter House Practice Peterlee Station View Health Centre Bishop Auckland Co Durham Murton Medical Group Murton, Seaham Co Durham Consett Medical Centre, Consett Co Durham Waterloo House Surgery Millom, Cumbria Flatt Walks Health Centre Whitehaven Cumbria West Street Practice, Aspatria Cumbria Brunswick House Medical Group Carlisle Cumbria --- North of England Cancer Network Cancer Diagnostic Pathway Audit12

13. Methodology – Practice Locations and Population Dotted Eyes © Crown copyright and/or database right 2008. All rights reserved. Licence number 100019918 22 Practices from across the NECN agreed to participate in this audit Commissioning ClusterParticipating Practice Cumbria4 Durham5 North of Tyne5 South of Tyne4 Tees4 Total Participating Practice Population approximately 207,000 Total NECN Population = > 3 million North of England Cancer Network Cancer Diagnostic Pathway Audit13

14. The audit process was supported by the diagnostic pathway audit template Methodology – Tools, Parameters and Timelines The Timelines The Exclusions The Audit Parameters The Template The data fields were developed to: Determine any relationship between age/gender/ethnicity/communication and access and the likelihood of urgent referral or diagnosis of cancer Indicate where health promotion campaigns may encourage earlier attendance Identify delays in referrals for certain cancers Identify delays that practice systems may affect onward referral Identify potential delays in the method or urgency of referral The Audit, collected data from the period between the 1 April 2009 and the 31 March 2010. Records to be included needed to have demonstrated at least one of the following within the timeframe: a patient presentation a patient referral a specialist appointment Records of patients diagnosed through screening were excluded as were dyscrasias, pre malignant states and non melanotic carcinoma of the skin The Audit process started in June 2010 and ran through until the end of October 2010 in which time the Practices were required to submit their completed audit template and their practice meeting /learning event report. Data cleansing, analysis and report development started in September and ran through until Mid November 2010. 14North of England Cancer Network Cancer Diagnostic Pathway Audit

15. The Audit Process 15North of England Cancer Network Cancer Diagnostic Pathway Audit

16. Stage 2 – Data Cleansing and Analysis Stage 3 – Individual Practice learning and report submission Stage 4 - Report development and sign off Stage 1- Template completion and Submission Two practices withdrew from the Audit. The remaining 22 participating Practices met the timelines for template submission - 30/9/10 There was some support required for a few practices during template completion. This was carried out by email or telephone and mainly concerned the functionality of the spreadsheet template. Support was supplied by external consultants who were commissioned to project manage the process, analyse the data and produce the report. The Audit Process Data cleansing was carried out in two parts: Part 1 where all dates were checked and validated. Part 2 where data was checked for logic, completeness and clarity. Where anomalies and or blanks in data was discovered the Practices where asked to recheck and/or to complete selected data fields. Data analysis was carried out across the consolidated data set for the whole Network. Individual practice analysis and locality analysis was considered problematic due to the limited amount of records in each cohort and the danger of revealing any individual patient record or source. All practices were asked to consider their audit findings at a Practice meeting and /or learning event. Each Practice submitted a record of these discussions using a pre prepared template or free text notes or minutes by 31/10/10. The Practices were required to consider the following for their report: Issues from the Audit Learning from the results Action taken in the practice The main themes from these reports were collated and summarised for this report. An initial draft report was produced for a meeting with the GP Cancer Leads on the 15/10/10. At this meeting the scope of the analysis was discussed and agreed. Further development of the report was undertaken and submitted to the Cancer Leads for input on 4/11/10. The report was finalised on 12 November 2010. 16North of England Cancer Network Cancer Diagnostic Pathway Audit

17. Findings 17North of England Cancer Network Cancer Diagnostic Pathway Audit

18. Findings - Overview The Diagnostic Audit Template facilitated the direct recording of 29 key data items associated with the patient journey From the recording of four key dates specific timelines and days durations were calculated and these calculations were included within the template Consideration of patient vulnerability is a key issue in the audit. The template provided for the identification of patients with specific communication issues or were housebound Given the nature of these data items it was not expected that submitted records would be 100% complete Date patient first noted signs / symptoms – 31% of which were blank Date patient informed primary care – 14% of which were blank Date of Referral – 10% of which were blank Date first investigated or seen by specialist – 6% of which were blank Approximately 10% of the records submitted indicated “Not Sure” or were left blank with regard to identifying whether the patient had problems communicating or were housebound This section provides graphical representations of the data recorded. Findings have been presented within five sections: Base information Attendances Referral details and processes Diagnosis, including staging information; and Possible Avoidable Delays Many of the graphs do not require very much in the way of explanation or commentary, although if included clarification and observation has been kept to a minimum. In most cases the graphs present a view of all records and then ‘drill down’ to specific cancer site detail. In determining the range and extent of analysis consideration has been given to the number of records and the statistical value of any findings. 18North of England Cancer Network Cancer Diagnostic Pathway Audit

19. Findings – Key Factors 696 validated Records 28 Cancer Sites represented Only 5 cancer sites with > 50 records The total population represented >207,000 85% of records were recorded as white British (13% are unknown) Analysis at NE Cancer Network level “Top 5 Cancer Sites” recorded in this audit reflect the national incidence To qualify as a valid record it was agreed that the following key data items had to be 100% complete: Age Gender Ethnicity Diagnosis Stage at Diagnosis Where the patient first presented Would rapid access to investigations alter case management Type of referral The numbers of records for each cancer site ranged from 2 to 105. For the purposes of this report analysis at cancer site level has been restricted to the 5 sites with >50 records: Lung Colorectal Prostate Breast Bladder To maintain overall effective analysis this has been carried out at Network level only. To qualify as a valid record it was agreed that the following key data items had to be 100% complete: Age Gender Ethnicity Diagnosis Stage at Diagnosis Where the patient first presented Would rapid access to investigations alter case management Type of referral The numbers of records for each cancer site ranged from 2 to 105. For the purposes of this report analysis at cancer site level has been restricted to the 5 sites with >50 records: Lung Colorectal Prostate Breast Bladder To maintain overall effective analysis this has been carried out at Network level only. 19North of England Cancer Network Cancer Diagnostic Pathway Audit

20. Findings - Base Information “Top 5 Cancer Sites” – this colour coding, where relevant, has been used within site specific graphs 20North of England Cancer Network Cancer Diagnostic Pathway Audit

21. Findings - Base Information 21North of England Cancer Network Cancer Diagnostic Pathway Audit

22. Findings - Base Information 22 North of England Cancer Network Cancer Diagnostic Pathway Audit

23. Findings - Base Information 23North of England Cancer Network Cancer Diagnostic Pathway Audit

24. Findings - Base Information There were 651records where the patient had no problems communicating A further 7 records stated “Not Known” or were left blank 38 records provided details of the communicating problem, with 28 of these records relating to the ‘Top 5’ Cancer Sites Patients with problems communicating 573 of the 696 records stated that the patient was not housebound 62 Records stated “Yes” the patient was housebound; and The remaining 61 records were either “Not sure” or left blank Of the 62 records stating “Yes”, 46 related to the ‘Top 5’ Cancer Sites Is the Patient Housebound ? LungColorectalBladderBreastProstate NO8180407683 YES15 682 Not Known 956312 Does the Patient have any communication problems? LungColorectalBladderBreastProstate Dementia21011 Learning Difficulties 10010 Mental Health 20201 Poor Hearing23202 Poor Vision13111 24North of England Cancer Network Cancer Diagnostic Pathway Audit Vulnerable Groups

25. Findings - Attendances It seems that by far the majority of patients only attend once or twice before being referred to Secondary Care. With regard to the 56 patients with zero attendance the assumption is that these were emergencies or not referred by the practice. However there is insufficient information to arrive at such a conclusion. Of these 56 records, 4 were recorded “Unknown” in terms of the referral type and 25 appear to have been referred by the practice. 9 of the 25 ‘subset’ were referred on the day of attendance, therefore the practices may have recorded these as a zero attendance. This graph represents 631 records, the remaining 65 records presented insufficient detail on number of attendances to be used in this analysis. It seems that by far the majority of patients only attend once or twice before being referred to Secondary Care. With regard to the 56 patients with zero attendance the assumption is that these were emergencies or not referred by the practice. However there is insufficient information to arrive at such a conclusion. Of these 56 records, 4 were recorded “Unknown” in terms of the referral type and 25 appear to have been referred by the practice. 9 of the 25 ‘subset’ were referred on the day of attendance, therefore the practices may have recorded these as a zero attendance. This graph represents 631 records, the remaining 65 records presented insufficient detail on number of attendances to be used in this analysis. North of England Cancer Network Cancer Diagnostic Pathway Audit25

26. Findings - Attendances 26North of England Cancer Network Cancer Diagnostic Pathway Audit

27. Findings - Attendances North of England Cancer Network Cancer Diagnostic Pathway Audit27

28. Findings - Referral Details and Processes 28North of England Cancer Network Cancer Diagnostic Pathway Audit

29. Findings - Referral Details and Processes 29North of England Cancer Network Cancer Diagnostic Pathway Audit

30. Findings - Referral Details and Processes 30North of England Cancer Network Cancer Diagnostic Pathway Audit

31. Findings - Referral Details and Processes Reviewing average number of days between attendance and referral needs to be aligned with the number of records e.g. Vulval shows an average of 66.5 days between attendance and referral. However there are only two records, one with 1 day between attendance and referral and the other with 132 days. EndometrialMelanomaBreastOesophagealTesticularGallbladderMesotheliomaOvarianColorectalUnknown PrimaryThyroidOropharyngealStomachLeukaemia Average Days2.76.07.910.511.015.015.615.816.416.819.019.422.225.1 No Records112187202651410063715 Min days00008000011000 Max days22561704014406112517640377399135 BladderPancreaticProstateOtherRenalLiverCervicalSarcomaLungLaryngealMyelomaLymphomaBrainVulval Average Days27.127.328.629.429.529.837.040.541.245.049.151.756.466.5 No Records52897322054610571026102 Min days00000000005001 Max days30311437724618577138127436197167269472132 31North of England Cancer Network Cancer Diagnostic Pathway Audit

32. Findings - Referral Details and Processes The “2 Week” referral option is by far the most common type of referral with more than 50% of all referrals falling into this group. A similar pattern is seen when selecting the ‘Top 5’ cancer sites. The follow page separates out the ‘Top 5’ cancer sites to illustrate the percentage share of type of referral 32North of England Cancer Network Cancer Diagnostic Pathway Audit

33. Findings - Referral Details and Processes 33North of England Cancer Network Cancer Diagnostic Pathway Audit

34. Findings - Referral Details and Processes 34North of England Cancer Network Cancer Diagnostic Pathway Audit Days from Referral to First Seen/Investigated by Specialist All RecordsLungColorectalBladderBreastProstate 0-14 days 4317563256460 15 – 21 days 56311596 22 – 28 days 3330836 29 – 35 days 2734136 36 – 42 days 1122110 43 + days 48510309 Unknown 90141097 696105100528797

35. Findings - Diagnosis In this audit it appears that the majority of cases are diagnosed at organ level. Lung being the exception, where a greater percentage appears to be diagnosed at later stages of the disease 35North of England Cancer Network Cancer Diagnostic Pathway Audit

36. Findings - Possible Avoidable Delays With most cancers, the earlier the diagnosis is made, the better the prognosis. One of the aims of the audit was to identify whether there were any avoidable delays in the patient journey. A wide range of factors possibly affecting the patient journey were reported. For the purposes of this report these have been categorised within the context of “A Health System” modelled below. 67% of records stated that there was no avoidable delays in the patient journey. Of the total 696 records 128 indicated avoidable delays with a further 67 records recording “Unsure”. “Health System Model” Communications Issues Clinical Decisions and Actions Patient Decisions and Actions Referral ProcessesNon Specific Investigations and Reporting Factors relating to the clinical decisions and actions made in both primary and secondary care Factors relating to poor or inappropriate communication that could have occurred at any stage within the patient journey Factors relating to the failure, delay or reporting of investigations including relevance and timeliness Factors relating to decisions and actions made by the patient Factors relating to aspects of referral – such as timeliness, appropriateness and the referral protocols themselves Some comments were too vague or unique to categorise 72 Records 17 Records 27 Records 45 Records 36 Records 12 Records 36North of England Cancer Network Cancer Diagnostic Pathway Audit

37. Findings - Possible Avoidable Delay The above presents the “Health System Model” categories across all records and shows a summary of comments made regarding possible avoidable delays. In indicating possible delays 195 records stated “Yes” or “Unsure”. It should be noted that some records recorded “No” but still provided comments. All comments have been included in this categorisation. 487 comments have been reflected in this section. 37North of England Cancer Network Cancer Diagnostic Pathway Audit

38. Findings - Possible Avoidable Delay 38North of England Cancer Network Cancer Diagnostic Pathway Audit

39. Findings - Possible Avoidable Delay 39 North of England Cancer Network Cancer Diagnostic Pathway Audit

40. Practice Learnings and Actions 40 North of England Cancer Network Cancer Diagnostic Pathway Audit

41. The Key Themes from the Practice Reports are summarised below IssuesLearning'sActions Some Practices identified changes to specific process and/or administrative procedures to improve communication. Examples of these include: Regular forums where suspect cases can be discussed. These discussions would take place prior to referral and help the decision making processes around case management and the referral ; ‘red flagging’ suspected cancer on Practice systems to ensure all clinicians are aware of potential diagnosis. The majority of Practices highlighted issues that had not been clear to them before the audit. Examples include: Prostate Cancer protocols required review Repeat chest x-ray for suspected lung cancer required further thought and action The 2 week referral criteria did not always fit a patient presentation 2 week referrals were being seen within the timeline but patients often waited a long time for further investigations Co morbidity often masked underlying cancer Negative investigation results delayed diagnosis By far the most important ‘learning’ the practices described was that they were required to be far more vigilant in their suspicions of cancer even when the clinical presentation did not ‘quite fit’, the initial investigations were negative and/or the patient had co morbid disease that may mask an underlying cancer. Practices described the potential to establish effective training and development, case review and significant event audit to ensure more effective and informed vigilance. The other ‘learning’ that stood out was that communication within the practice was vital. To address this the following developments were highlighted: Red flagging systems to identify potential cancer cases Forums for complex case discussions Standardisation of patient review systems and operational practices to ensure that investigations are carried out appropriately, consistently and timely. The majority of the practices reported that the audit had been beneficial and some practices planned to repeat the audit in one year. Practice Learning and Actions All the practices reported some actions to improve the current patient journey in primary care. The following are the key themed actions reported: Forums for internal discussions Improving system coding/flagging Reviewing internal investigative protocols e.g. Prostate Lowering threshold for investigations e.g. Chest X-rays for smokers; further investigations for anaemia. Improving teaching about diligence in complex cases Significant event audit on complex cases Improve systems to track results Increase the amount of routine weighing of patients North of England Cancer Network Cancer Diagnostic Pathway Audit 41

42. Recommendations 42 North of England Cancer Network Cancer Diagnostic Pathway Audit

43. Consider further analysis and review against national audit data findings. Further exploit the use of the audit tool with other practices to enhance and inform work arising from the ‘Practice Profiles’. Share the finding with a wider stakeholder groups to agree further work/actions i.e. Practice Based Commissioning Groups, Primary Care Trust commissioners and Secondary Care. Facilitate and support specific pathway discussions where there is a specific need i.e. Prostate Cancer. Agree the uploading of NECN data with the national cancer team. North of England Cancer Network Facilitate further discussion and action on avoidable delays which may include locality specific issues. Consider an audit that tracks timelines for investigations following 2 week referral first appointments. Commissioners Where possible share the practical implementation of improvements with a wider range of practices. General Recommendations North of England Cancer Network Cancer Diagnostic Pathway Audit 43

44. Acknowledgements 44 North of England Cancer Network Cancer Diagnostic Pathway Audit

45. Acknowledgements NameOrganisationemail Dr Duncan LeithNECN – Cancer Lead and Chair of the Primary Care Group duncan.leith@gpA84025.nhs.uk Dr Jonathan BerryNECN GP Cancer Lead jberry@nhs.net Dr Robin ArmstrongNECN GP Cancer Lead robin.armstrong@nhs.net Dr Henry ChoiNECN GP Cancer Lead hychoi@doctors.org.uk Dr Joan BrysonNECN GP Cancer Lead joan.bryson@gp-a85007.nhs.uk Dr Relton CummingsNECN GP Cancer Lead relton.cummings@nhs.net Susan CollinsCancer Services Officer, NHS Cumbria susan.collins@cumbriaPCT.nhs.uk Professor Greg RubinWolfson Unit, Durham University g.p.rubin@durham.ac.uk Suzanne ThompsonNECN Cancer Modernisation Manager suzanne.thompson@sotw.nhs.uk Joanne PrestonNECN Service Improvement Facilitator jo.preston@sotw.nhs.uk Linda WintersgillInformation and Audit Manager NECN linda.wintersgill@sotw.nhs.uk All Participating Practices and their staff 45 North of England Cancer Network Cancer Diagnostic Pathway Audit

46. 46 North of England Cancer Network Cancer Diagnostic Pathway Audit