AUD66 CNS Workload Audit Report - DRAFT. NOTE: On authorisation and publishing DRAFT watermark will be replaced by Anglia Cancer Network Map

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Audit Ref: AUD66 Title AUD66 CNS Workload Audit Report - DRAFT Date: January 2013 Project Lead: Julie Ingmire Anglia Cancer Network Audit Co-ordinator: Sarah Steele Anglia Cancer Network registration reference: AUD66 NOTE: On authorisation and publishing DRAFT watermark will be replaced by Anglia Cancer Network Map Page 1 of 14 H:\Cancer Network\Tumour Site\Upper GI\UGI SSG\ACN\Meetings 2013\05.02.2013\AUD66_CNS_Workload_Audit_Reportv0.2.d oc Audit Approved and Published

Introduction There has been a perception that there are not enough UGI/HPB CNSs within the network to enable them to carry out their role effectively. This is borne out by national data: The 2010 National Census of CNSs showed a total of 10.89 WTE in the Anglia Cancer Network, giving the network the 5 th largest group of UGI/HPB CNSs In the 2011 National Census of CNSs, the numbers in the network had reduced to 9.04 WTE, giving the network only the 10 th largest group of UGI/HPB CNSs Underlying the above team sizes, the network has the 4 th highest level of new UGI/HPB cancer cases according to UK-CIS data on new cancer cases in 2009 (which is the latest data available). At the time of the audit during the summer of 2012, there were 10.4 WTE CNSs working with UGI/HPB patients although it should be noted that there were some posts to be filled (see Exclusions section below). Objective The objectives of this audit were to identify: Whether there are inequalities across the network in the levels and types of support provided by the UGI/HPB CNSs Whether there is a proportion of UGI/HPB CNS activity that could be covered by other roles or accomplished in a different way Whether additional UGI/HPB CNSs are needed to provide appropriate patient care (medical and supportive) across the network Whether patients require proportionately more input from UGI/HPB CNSs at particular stages of their pathway, and hence that UGI/HPB CNS activity should be prioritised in some way Sample All UGI/HPB CNSs within the Anglia Cancer Network were invited to complete a 2 week diary of activities. The request was for 2 weeks of data, preferably sequential weeks, within a 6 week period between 16 July 2012 and 24 August 2012. In the event, some respondents found it difficult to complete during that time, mainly due to pressure of work whilst covering for other colleagues who were on annual or sick leave, and the audit period was extended to end September 2012 as a result. In other cases, respondents had already completed a similar exercise for internal Trust purposes and elected to submit that data rather than complete the audit proforma. Page 2 of 14 Approved and Published

Exclusions There were no specific exclusions, but it should be noted that sometrusts did not participate for the following reasons: Papworth does not have specific UGI/HPB CNSs James Paget no UGI/HPB CNS in post at the time of the initial audit Peterborough no UGI/HPB CNS in post at the time of the initial audit Ipswich HPB CNS not known/not in post at the time of the initial audit Method A proforma was provided for each participant to complete prospectively each day, to note each separate contact or activity that they undertook, for what reason, and for how long. A template proforma can be found in Appendix C of this report. The resulting data from all participants was then recorded in an excel spreadsheet by the audit coordinator, with the analysis being drawn from this spreadsheet. Each participant also completed a set of covering questions regarding their role as a whole. A copy of this questionnaire can be found in Appendix A of this report. Standards No specific standards were set the audit was more an exploration of the variety of activities engaged upon by CNSs at different Trusts. Results Responses were received from: Trust Time Period Initial/ Extended/ Other Method Audit Proforma/ Other Bedford Other Other CUHFT Extended Audit proforma CUHFT Extended Audit proforma CUHFT Initial Audit proforma CUHFT Extended Audit proforma CUHFT Extended Audit proforma Hinchingbrooke Initial Audit proforma NNUHFT Initial Audit proforma NNUHFT Initial Audit proforma QEH Initial/Other Other QEH Other Other WSH Initial Audit Proforma The analysis of the collated returns was then discussed by 10 of the 12 participants prior to producing this draft report. Page 3 of 14 Approved and Published

The most significant finding was that, when viewing the aggregated data, the types of activities undertaken and the proportion of time spent on those activities was similar whether at a cancer centre or at a referring unit. Other key findings: 1. Seven returns were from cancer centres, five from referring units. 2. The audit period was felt to be untypical for many respondents at cancer centres, but generally typical for respondents from referring units. 3. Typically, a CNS in a referring unit was the only one working with UGI/HPB patients and had little or no cover; whereas a CNS in a cancer centre typically did have cover and was not the only CNS working with that group of patients. 4. Two-thirds of respondents worked on average between one and two hours per day over their contracted hours. These respondents were evenly spread across the centres and the referring units. 5. Almost two-thirds of respondents indicated that they did not have sufficient time to fulfil parts of their role. Again, these respondents were evenly spread across the centres and the referring units. 6. The amount of secretarial support available to the CNSs was very patchy: one centre has only just introduced support each weekday morning; two referring units have support for a similar number of hours but posts can be vacant for periods of time; some have support for typing letters only; and others have no support at all. Detailed findings, along with any comments on differences, can be found in Appendix B of this report. It should be noted that the detailed findings for cancer centres were also broken down into the results for the individual centres to allow for direct comparison between the two. In discussion with the CNSs, it was felt that any differences between the two generally arose from the fact that the audit period was not typical of the normal caseload, but in different ways: For NNUHFT, the untypical period was due to annual leave of consultants in general, and the CNSs were therefore able to work more on audits and other office-based activities For CUHFT, the untypical period was due more to annual or sick leave of colleagues with those in work having to cover the workload of the others as well as their own. These differences between the centres were therefore discussed no further. Conclusions It was acknowledged that this was a very difficult audit to complete as there was still room for different interpretations of how to complete the proforma in certain situations. It was also acknowledged that the central data collation was open to a level of inconsistent interpretation, particularly where the returns were not on the recommended proforma. This means that the results should only be relied upon to lead to general conclusions rather than specifics. Objective 1: Whether there are inequalities across the network in the levels and types of support provided by the UGI/HPB CNSs (Refer to Charts 1, 2 and 3). It was very encouraging and reassuring to see that the types of direct care activity undertaken, and the proportion of time spent on these direct care activities, is broadly similar whether you are looking at the cancer centres or the referring units. This demonstrates that there is a sound commonality of purpose amongst UGI/HPB CNSs across the network. Page 4 of 14 Approved and Published

Objective 2: Whether there is a proportion of UGI/HPB CNS activity that could be covered by other roles or accomplished in a different way (Refer to Charts 4, 5 and 6) The use of the term administration to denote a collection of activities does not give an accurate picture of the valuable work that a CNS does. The amount of time spent on this (40+%), in combination with the fact that more than half of a CNS s working week is spent in the office could give rise to the misconception that the role of a CNS is more administrative/secretarial than patient- centred. The data was therefore further broken down to show the time spent in different locations specifically on CNS administration duties, which does start to show that this category of activity is not all office-based. The dictionary definition of administration is organisation; direction; and office work. The critical message is that the CNS role is much more about organisation and direction (of the patient pathway). It just happens that much of it is conducted from an office rather than from a ward. Objective 3: Whether additional UGI/HPB CNSs are needed to provide appropriate patient care (medical and supportive) across the network; and Objective 4: Whether patients require proportionately more input from UGI/HPB CNSs at particular stages of their pathway, and hence that UGI/HPB CNS activity should be prioritised in some way (Refer to Charts 3, 8 and 9) The role of the CNS in a referring unit is vital, and should not be undervalued. They undertake much of the patient pathway coordination and patient information/ communication and support during the diagnostic phase, preparing their patients well for what they will encounter when they are transferred to the centre. Whilst the absence of any CNS (for example, on annual leave) is keenly felt, the absence of a CNS from a referring unit is immediately felt at the centres who find they have more work to do per patient as a consequence. The patients may also find themselves less prepared than usual for the type of questions they will be asked at the centre. Given this, and in the context of key finding number 3 above, there is a case for the level of resourcing or the approach to cover in referring units to be reviewed. Recommendations The whole group of CNSs feel it would be worthwhile to re-focus the audit to remove ambiguities in the data collection, and implement again. The expectation is that the Alexa toolkit can be amended for use for UGI/HPB. This is a validated toolkit, originally implemented for Lung CNSs, and can be found on https://www.cancertoolkit.co.uk/profiles/alexa. This work would need some input from the toolkit s author Dr Alison Leary, but the end result could be something that would be of use nationally for UGI/HPB CNS workloads. Cancer Managers at referring units would be recommended to review their cover arrangements for UGI/HPB CNSs to ensure that there is continuity of support for patients and liaison with cancer centres. Page 5 of 14 Approved and Published

Action plan Jane Tallett and Julie Ingmire to contact Dr Alison Leary and invite her to help with calibration of the Alexa Toolkit for UGI/HPB and, in the longer term, undertake a re-audit of CNS workload using the revised toolkit. CNSs to highlight this audit report, when published, to their respective Cancer Managers. References Report Approved By: Date: Report published to Internet By: Date: Page 6 of 14 Approved and Published

Appendix A UGI/HPB CNS Audit Questionnaire During the time of the data collection: What was your job title? What area did you predominantly work in? i.e. Cancer Centre, Unit, District General Hospital, Primary Care What were your contracted hours as a Cancer Nurse Specialist (CNS)? Were you the sole CNS within your Trust working with UGI cancer patients? If you answered no please record who the other CNSs were (Job titles) and generally what involvement they had in providing supportive care to UGI cancer patients Did you have any formal cover arrangements for your position for leave/study/sickness? If yes what were those arrangements and who provided cover? (i.e. other CNS working within the same or different role, non specialist ward/clinic staff) Do you have any Administrative support for your role? Did you solely provide supportive care to patients on the UGI cancer pathway? (i.e. did you support patients with a non-cancer diagnosis or other cancer site) If no, roughly what proportion of your time was dedicated to UGI cancer patients and their pathway How many new referrals did you receive for patients on the UGI cancer pathway? How many UGI cancer patients did you discharge from your caseload? (this could be a handover to other CNSs ie specialist palliative care) How many UGI c ancer patients on your caseload died? To what extent do you think the period covered by the audit was typical of your workload? Very typical Not very typical Not at all typical Comments To what extent do you think the period covered by the audit was typical of your direct care interventions for UGI cancer patients? Very typical Not very typical Page 7 of 14 Approved and Published

Not at all typical Comments Is there any part of your role that you are currently not able to fulfil due to time constraints? Page 8 of 14 Approved and Published

Appendix B Detailed findings Chart 1 Activity Initiators Activity initiator - Referring Units Activity Initiator - Cancer Centres 19% 23% 13.7% 24.4% Patient Contact 6.7% Patient Contact 10% 9% Family/Carer Healthcare Professional Self Non-Direct Care - HCP Non-Direct Care - Self 28.2% 7.5% Family/Carer Healthcare Professional Self Non-Direct Care - HCP Non-Direct Care - Self 20% 19% 19.5% Analysis shows that numbers of direct contacts with patients and family/carers, whether instigated by them or by the CNS (Self), are roughly similar between referring units (52%) and cancer centre (60%). The greater level of self-generated contacts in cancer centres is felt to be down to follow up calls after treatment, whereas patients tend to be calling their local CNSs for information. Chart 2 Time spent by activity initiator Time Spent with Initiator - Referring Units Time Spent with Initiator - Cancer Centres 20% 12.2% 25.2% 10% 14% 8% 33% Patient Contact Family Carer Healthcare Professional Self Non-Direct Care - HCP Non-Direct Care - Self 7.3% 28.8% Patient Contact Family Carer Healthcare Professional Self 7.2% Non-Direct Care - HCP Non-Direct Care - Self 15% 19.3% Similarly to Chart 1, the amount of time spent on direct contacts with patients and family/carers, whether instigated by themselves or by the CNS (Self), is broadly similar between referring units (55%) and cancer centres (61%). Page 9 of 14 Approved and Published

Chart 3 Direct Care Reason Reasons for Direct Care Activity - Referring Units Reasons for Direct Care Activity - Cancer Centres 15% 1% 23% Pathway Coordination Information - General 17.8% 5.0% 29.6% Pathway Coordination Information - General 17% HCP sharing/ requesting information Symptomatic/ Physical HCP sharing/ requesting information Symptomatic/ Physical Symptomatic/ Psychological 19.0% Symptomatic/ Psychological 16% 28% Discharge planning 12.9% 15.7% Discharge planning Activity levels covering patient pathway coordination and patient information are broadly similar across referring units (53%) and cancer centres (45%). It is also understandable that cancer centres are likely to be engaged in much more discharge planning than referring units. Chart 4 Non-Direct Care Reason Reasons for Non-Direct Care Activities - Referring Units Non-Direct Care Reasons - Cancer Centres 6% 15% HCP sharing/ requesting information Research/Audit/Peer Review 9.5% HCP sharing/ requesting information 27.4% Research/Audit/Peer Review 9% Education Education 45% 7% Management/Leadership Policy Development 38.6% 11.6% Management/Leadership Policy Development 9% Other Office Admin (CNS Role) Other Office Admin (CNS Role) 9% Other Office Admin (a non-cns could have done) 3.3% 9.8% 9.3% Other Office Admin (a non-cns could have done) Chart 5 Locations Locations - Referring Units Locations - Cancer Centres 1% 10% Page of 14 12% 2% H:\Cancer Network\Tumour Site\Upper Ward GI\UGI SSG\ACN\Meetings 1% Outpatient Department 5% Nurse-led Clinic Clinician-led Clinic 7% Diagnostic Area 0% Community/ Patient's Home 8.0% 4.5% Approved 13.8% and Published 1.1% Ward Outpatient Department 3.9% Nurse-led Clinic 5.5% Clinician-led Clinic 2.3% Diagnostic Area 0.0% Community/ Patient's Home

Chart 6 Time spent, and location of, CNS Admin tasks Time spent, and location of, CNS Admin activities - Referring Units 12% 2% 0% Ward Outpatient Department Nurse-led Clinic Clinician-led Clinic Diagnostic Area Community/ Patient's Home Office 86% Other Time spent, and location of, CNS Admin activities - Cancer Centres 0% Ward Outpatient Department 33% Nurse-led Clinic Clinician-led Clinic Diagnostic Area 58% Community/ Patient's Home 9% Office Other Chart 7 Tumour Sites Tumour Sites - Referring Units Tumour Sites - Cancer Centres 3.7% Page 11 of 14 31% 49% Oesophogastric Hepatobiliary Unknown Primary Other 41.7% 0.4% Approved and Published 54.2% Oesophogastric Hepatobiliary Unknown Primary Other

Chart 8 Stage in Pathway Stage in Pathway - Referring Units Stage in Pathway - Cancer Centres 16% 24.9% 19.8% 54% 4% 26% Diagnostic Curative Treatment or Follow-Up Palliative Treatment or Support 24.9% 30.5% Diagnostic Curative Treatment or Follow-Up Palliative Treatment or Support Chart 9 Direct Care Method Method of Direct Care - Referring Units Method of Direct Care - Cancer Centres 8% 2% 4.6% 19.3% 33.8% Page 12 of 14 45% Face to face 45% Phone E-mail Approved and Published Face to face Phone E-mail 42.3%

Chart 10 Admission Avoidance Admission Avoidance - Referring Units Admission Avoidance - Cancer Centres 3% 1% 16% 4.4% 2.6% 15.5% Yes No Not Applicable Yes No Not Applicable 80% 77.4% Page 13 of 14 Approved and Published

Audit Ref: AUD66 UGI/HPB CNS Workload Anglia Cancer Network Appendix C UGI/HPB CNS Activity Diary Length (mins rounded to nearest 5 mins ) Location: Ward (W), OPD (OPD), Nurse-led clinic (NC), Clinician-led clinic (CC), Diagnostic area (D), Community/Patients Home (CPH), Office (OF), Other (O) please specify Direct Care Contact/Activity Initiator: Patient (P), Carer/relative (C), Healthcare Professional (HCP), Self (S) Method: Face to Face (F), e-mail (E), phone (P) Cancer Site: Oesophagogastric (OG), Hepatobiliary (HPB), UGI cancer unknown primary (CUP) Stage in Pathway: Diagnostic (D), Curative Treatment or Follow-Up (C), Palliative Treatment or Support (P) Patient pathway co-ordination ( ) Informational - general( ) Healthcare Professional sharing/requesting information ( ) Symptomatic/Physical ( ) Symptomatic/Psychological ( ) Discharge Planning ( ) Did you avoid an admission (Y,N,not applicable (NA)) Non-Direct Care Activities Initiator : Healthcare Professional (HCP) or Self (S) Healthcare Professional sharing/requesting information ( ) Research/ Audit/Peer Review ( ) Education ( ) Management/ Leadership ( ) Policy Development ( ) Other Office Admin (CNS Role) ( ) Other Office Admin (a non-cns could have done) ( ) Activity Activity Activity Activity Activity Activity Activity Activity Page 14 of 14 Audit Approved and Published