NORTH OF SCOTLAND PLANNING GROUP

Transcription

1 Meeting: NoSPG Date: 29 th June 2011 Item: 47/11 (i) NORTH OF SCOTLAND PLANNING GROUP Brachytherapy There has been a multi-professional group developing a national report on Brachytherapy services. The group are reporting via the Scottish Radiotherapy Advisory Group (SRAG). The report was commissioned following various issues raised from the experience of the NoS Brachytherapy services review and the need to understand better the future indications of Brachytherapy treatments and resultant service impacts. Presently, bracytherapy is administered in predominantly gynae-oncology cancers though there are emerging roles for its use in multiple other tumour groups which may increase clinical demand significantly. The draft report also includes a national contingency plan which was developed by Peter Gent on behalf of the working group. The report is currently being reviewed by SRAG and will be reported back to NoSPG and the Regional Cancer Advisory Forum over the next few months. Scottish Chemotherapy Advisory Group Following the last meeting Chemotherapy Advisory Group, it was agreed that the North should seek to appoint a regional group to take forward the actions arising form the national work programme. A representative group for the North of Scotland Cancer Centres has since met, Chaired by Dr Marianne Nicolson. A regional action plan has been agreed and a progress report will be submitted to the RCAF in time for the next meeting. The aims of the north group include: Improving cross centre communication A regional approach to benchmarking compliance against the national HDL Undertake a regional audit in relation to 30 Day Mortality Regional agreement on consenting for chemotherapy treatment Seek advice from the East & West networks with regards to their service reviews Review of current quality assurance systems in place for the north chemotherapy services. CEPAS (upgrade version of Chemocare-chemotherapy electronic prescribing system) A finalised regional business case has been submitted to the NHS Boards for local actioning. The regional case was successful in assuring national funding for the license costs ( 447k). NHS Highland has approved funding support for the local capital and revenue costs and NHS Tayside and Grampian are each formalising their cases locally through the local funding approval structures. The final report favoured upgrading each of the current ChemoCare systems to CEPAS in each of the 3 cancer centre Boards, with a hub and spoke system to support local delivery units in the Islands, District General and remote delivery units. Other options included single or partially shared systems, which offer some longer term financial benefits but at this time carried high risk around satisfactory implementation, mainly due to migration of information and concerns around IT linkage across the Boards. It is however noted that future CEPAS system upgrades should include reconsidering opportunities to reduce the number of CEPAS systems across the region if at all possible. Key learning points from the CEPAS work: Successful bids against national funding to assist what might otherwise be a major financial challenge to cancer centre Boards. A number of Clinicians had significant concern around operating a shared system and potential prescribing control measures that may emerge as a consequence of sharing a system. This inevitably was a major bias that led to the preferred outcome. Page 1 of 31

2 Lack of clinical confidence in cross Board electronic systems and the potential day to day disruption as a consequence on clinical care delivery. Stronger Operational involvement at Board level may have helped to more robustly challenge the decision making around the options. The financial element of CEPAS was (and continues to be) significant. The developers most likely have a strong hand in how future upgrades and maintenance / support is traded with the Boards and therefore CEPAS in future needs to be more robustly managed, and technology allowing, as a national single system or at very least, regional, to optimise value for money. CEL Guidance on The Introduction and Availability Of Newly Prescribed Medicines In The NHS In Scotland The three Pharmacy leads for the cancer centre Boards have completed systems checks to make sure that each Board area has a compliant set of practices with regards to CEL 17. David Pfleger is helping to articulate the regional component of the guidance, which will be consulted across all of the NoS Boards and communicated thereafter back to Dr Aileen Keel. The regional elements are likely to include consistency of uptake of newly available treatments and review of individual patient request data at a regional level for consistency. Scottish Cancer Taskforce Group Cancer Workplan A 4 th version of the national draft workplan is being agreed at National Cancer Taskforce level. Chief Executives have been briefed at Government level regarding the direction and contents of the workplan. The key themes covered include: Improved efforts in prevention; Earlier detection & diagnosis; Surgical oncology (would fewer operating centres help to improve outcomes across tumour groups); Safer and more efficient delivery of chemotherapy services; Optimal use of radiotherapy capacity. The north is well engaged in the safer chemotherapy and radiotherapy elements already and this work will continue in line regionally and nationally as per national workplan. The NoS Oncology Efficiency Group are preparing a briefing for NoSPG and Board Finance Teams that will outline current and future service efficiency opportunities which is an integral part of the national workplan. Prevention is something that will require considerable sustained effort for many years ahead. Presently, obesity is the second most common risk factor for developing cancer and presents Boards with challenges around what more can be done within the health service to promote healthier lifestyle. A way forward would be to strengthen the common work and links between networks, where similar lifestyle factors are prevalent and thereby sharing effort more effectively and efficiently. In terms of surgical oncology, this agenda poses a significant challenge to existing services and will generate significant debate at clinical level. The issue ought not to be considered as just clinician workload but how well services are structured to provide all the necessary components of care. The progress of this is awaited but it is essential that Boards begin to consider the implications of any surgical oncology review, how best services might be organised in future and what level of data is necessary to evaluate which (if any) services need to change. There are major implications for patients, positive and negative which require to be factored into the decision making, as well as the potential impact upon other clinical services as a collateral consequence. ecase Project Board Progress Work to develop the ecase system has continued and remains a priority for the network. Last year, NOSCAN Boards provided 51k towards the project. The outcome of the most recent project board meeting was that further work is required and that the West and North should continue to support and develop ecase as a national cancer audit tool. The East has been asked to review their own position through their regional planning group and hopefully realign to ecase development in future. An incentive for the Boards to maximise support for ecase is the implementation of cancer Quality Performance Indicators (QPI s), which Boards will require to report against in future and thus escalating the future importance of ecase. Looking ahead, the Project Board have proposed that further development work and resources/support is required. Page 2 of 31

3 Presently, an IT developer in NHS Orkney is piloting involvement and potential future support though ongoing funding will be required. NoSPG members are asked to consider inviting a proposal to reinvest in the project for at least a further 12 months, up to a comparable level of last year. NoS Breast Cancer Report The draft NoS Breast Report has been circulated for comment. The report aligns closely to the nationally agreed QIS standards for breast cancer services and is consistent in its messages with other key national breast cancer best practice guidance(s). There are a series of key recommendations set out in the report, which have predominantly been commented against positively. Concerns have been raised through an Islands based surgeon with regards to locally based services and the impact of recommendations for Island / rural locations. The key recommendations from the report include (not word for word from report): In most cases, the diagnosis of breast cancer is co-ordinated via the specialist breast centres in Aberdeen, Dundee and Inverness. Islands patients in Orkney & Shetland currently have their diagnosis spread over a number of visits, including attending Aberdeen for imaging / specialist pathology intervention not available locally. Investigation and diagnosis can be achieved on a single visit by referring direct. The recommendation should however be flexible to take account of individual patients considered unfit e.g. elderly, those with multiple other heath problems, to travel to Aberdeen. The Boards appoint a breast lead to help co-ordinate service requirements across services. This may not be feasible or practical for the Islands but would be strongly encouraged for the mainland Board areas. Clinicians continue to work in teams to support good clinical decision making as to the best management of individual patients. The existing MDT s are examples of good practice that should be sustained and where possible, strengthened. Teams of staff working in smaller volume services should get support from the specialist centres for training etc that will help keep skills current (all members of the clinical team). Treatment options should be delivered locally wherever possible, including surgery, and an informed dialogue with patients regarding treatment options and where these are available engaged with individual patients. The aim of the report is to point out how best quality of services can be sustained. The report does not set out to diminish the role of certain current services. NHS Western Isles already have moved to manage all breast cancer via specialist services in NHS Highland. NHS Orkney AMC has broadly agreed the recommendations and an ACF decision to confirm support is awaited. NoS Gynaecology Cancer Report A final report has been prepared on behalf of the NoS Gynaecology Cancer Service Review SLWG and which is anticipated will be available for sharing in advance of the meeting. The report makes a number of recommendations which have followed only after many months spent gathering information from colleagues and service providers across the North of Scotland, and consideration of the changing health needs of women and the need to deliver quality cancer care within evolving resource. The paper suggests how best it believes service should be arranged and highlights some of the most likely risks to service in the event that this is not achievable or should an alternative delivery model be chosen or emerge. Musculoskeletal Surgical Sarcoma service The national MCN for this is being de-designated back to Boards. It is now on the agenda of the NoS IPG and RCAF to advise Boards on the options for local management. The tumour group that this is relevant for is small though the costs for individual treatments may be significant. An updated options appraisal will be presented to NoSPG members for consideration, which is likely to include a range of risk-sharing options. Page 3 of 31

4 Regional Oncology Efficiencies Group Progress The regional group, chaired by Mr Gerry Marr, Chief Executive of NHS Tayside has continued to progress an agreed regional action plan. An outline of progress is as follows: Systems check that Boards are purchasing against the national procurement scheme where ever possible; Cancer chemotherapies are moving to dose-banded preparations, purchased through national procurement wherever possible which has both cost and shelf-life benefits; An audit of top 25 most expensive treatments across the 3 cancer centres is underway, which is being population based and significant variations explored further; Significant VAT savings opportunities are being identified. Discussion at Finance Director level has been sought by way of gaining support in accounting terms for the VAT opportunities; Grampian is piloting a virtual GP prescribing system (also being piloted within WOSCAN) which will help maximise the Vat savings opportunities; A detailed report with individual cost efficiency initiatives is being prepare for NHS Board Finance committees. The group has achieved significant progress in creating a direction of travel to achieve improved efficiencies. It is noted also that many of the expensive treatments currently being utilised in cancer also have license indications in a range of benign conditions and therefore wider benefits than just specialist oncology and haematology. Colorectal Cancer Waiting Times A paper for discussion is attached at Appendix 1 that outlines work in relation to issues raised through the Scottish Cancer Taskforce Group, specifically in relation to colorectal cancer. The paper has been compiled by Mr Malcolm Loudon (CRC MCN Clinical Lead), Neil McLachlan and Tony Rafferty. The paper, using data gathered across NHSG, identifies the lack of specificity of present referral criteria and the burden of impact upon services and the resultant challenges for compliance against current waiting time requirements. The paper outlines an alternative strategy. Better Together Patient Experience Service Improvement Project Cancer & Haematology services Project Update, May 2011 The national Better Together team has drawn up an interim reflection report summarising the progress and key learning points from the 3 national pilots. Although each pilot site has taken very different approaches, there are a number of common themes and learning points emerging. The NHS Grampian pilot team has completed its report on the Upper GI service and is due to present the findings to the NESCCAG Upper GI Focus Group at the end of May. The team has visited Orkney to gather patient feedback and look at the impact for people in Orkney of travelling to Aberdeen for much of their care and treatment. The project team has also been evaluating public awareness of bowel screening home testing kits and people s understanding of the risk factors for bowel cancer using CRT Kiosks (electronic touch screen survey units). This work will be completed by June The team is also beginning to build up a library of patient stories which are being used to good effect in planning and training events to communicate the patient experience. SRAG Update Work to review treatments protocols across the 5 Scottish Cancer Centres is underway. A review of breast cancer XRT protocols has been concluded and lung is scheduled for May 11. The work is being co-ordinated by Dr David Dunlop, Dr David Linden and additional support from Peter Gent. An outcome of the breast protocols review was that there is some variance in protocols, mainly in one centre, and there is scope to improve linac capacity through reviewing such protocols. National Cancer Quality Steering Group Papers are attached for information. Within the newsletter is a timetable of future QPI development work. NoS clinicians have been centrally involved in the work so far and commitment appears to be Page 4 of 31

5 strong for this work. Discussion is underway with NHS Boards to agree how in future the QPI s will be performance measured and where responsibilities and accountabilities for this will rest. NoS Regional Lung Cancer Service Pathway Review Project management support has been identified to help take this review forward. The work has been commissioned by members of the Lung MCN group and supported at Medical Director level. The review is expected to commence in June 11 and progress will be reported back to the RCAF. The review specifically aims to address issues pertaining to the regional surgical pathway. Aberdeen is the regional provider however patients are being referred by both NHS Highland & NHS Tayside to other operating centres, hence the review. MOHs Surgery Dr Colin Fleming and his colleagues presently provide this service in Ninewells, Dundee. In keeping with the fast increase of skin cancer lesions, the current regional service is considering options for providing an additional day of MOHs surgery service. Initial clinical stakeholder and operational management discussions, principally between Aberdeen and Dundee, have agreed that the service should continue to be provided on a regional basis, and co-ordinated by its current team. The opportunities to expand include working with an Aberdeen clinician (currently providing input through an EPA). NoSPG are being advised at this early stage that revised plan, including options, will be presented to IPG for consideration of support. North of Scotland Cancer Network Lead Pharmacist Mark Parsons has been appointed NoS Lead Cancer Pharmacist. He will formally take up the position in June 11 and will lead the key pharmacy strands of the workplan for the NOSCAN region. The position has been funded on a Macmillan grant for a fixed period up to 2 years. Mr Peter King NOSCAN Clinical Lead Peter Gent NOSCAN Manager Page 5 of 31

6 Appendix I Colorectal Cancer and Cancer Waiting Times: A North of Scotland proposal Executive Summary Colorectal cancer is a common malignancy and a major public health concern in Scotland, and following the introduction of Cancer Waiting Times (CWT) in 2005, clinical and service activity has been dominated by the need of Boards to comply with nationally set targets (ie 62-days from referral to first treatment, and 31 days from decision to treat and first treatment ). In November 2010, the North of Scotland CRC Managed Clinical Network (MCN) expressed its concern to the North of Scotland Cancer Network (NOSCAN) regarding the continued need of service to deliver against these national service delivery targets, and the deleterious effect on service and on other patient groups. The following paper has been prepared in response to a request made thereafter by the Scottish Cancer Task Force for more information of the North of Scotland Colorectal Cancer MCN to support their original expression of concern. Using emerging data from NHS Grampian, the following paper provides evidence to support the NoS CRC MCNs claim that the existing CWT requirement particular to CRC fail to make appropriate use of available resources, are unsustainable and lead to detriment for other patient groups, before proposing an alternative and more appropriate strategy in the light of changing health priorities, together with more relevant measurable service criteria. The authors acknowledge the support of Paulette McCouaig - Cancer Audit Manager, NHSG, and Tony Rafferty - Cancer Pathways Facilitator, NOSCAN, who were able to provide the required data. Introduction: Since the introduction of the Cancer Waiting Times in 2005, considerable resource and effort has been expended nationally and by Board service providers across Scotland to reduce the time patients have had to wait prior to receiving a cancer diagnosis and/or subsequent first therapy. This has resulted in an ever increasing burden on service through the increase in patients now being referred and requiring investigation to exclude the presence of malignancy. Furthermore, these factors have led to concerns amongst clinicians about the ability of local services generally to sustain existing demand, in their ability to continue delivering quality and clinically relevant patient focused care and the negative impacts on other patient groups. With a higher rate than in most other countries in the Western world, colorectal (or bowel ) cancer is a major national public health problem in Scotland. Though there has been identification of, and national agreement on the clinically appropriate criteria required to precipitate an Urgent Suspected Cancer (USC) referral, the lack of specificity and heterogeneity of final diagnosis contributes to further difficulty in the management of the referral group. As a consequence, a significant number of patients continue to be referred (by Primary Care physicians) for investigation (to Secondary Care) via the USC route As has been evidenced by the reported data, overall national compliance with the CWT requirement for colorectal cancer has improved from around 57% (in the final quarter-year of Page 6 of 31

7 2004) to just over 95% (in the final quarter-year of 2010), However, during the same period there has also been an increase of around 85% in the number of patients now being referred 1. In NHS Grampian, over a similar five-year period (Oct-Dec 2004 to Oct-Dec 2009), the number of eligible referrals has increased by around 80% (from 15 to 27) and compliance has gone up from 53.3% to around 88.9%. [Latest figures (Oct Dec 2010) particular to CWT and CRC in Grampian, indicated that there were 29 patients - excluding Screened - who fulfilled the USC CRC referral criteria, of which just under 82% fulfilled first-treatment target] 2 However successful these figures appear, they fail to explain firstly, the energies and resource inputs that have been required of all services in NHS Grampian to secure their delivery, and overlook the risk of detriment to other patient groups as a consequence of the service need to focus on CWT. Furthermore, disappointingly there remains absolutely no evidence for survival advantage in shortening diagnosis to treatment times for colorectal cancer despite the disproportionate resource required, and the creation of considerable tension around the management of other patient groups. In late November 2010, the North of Scotland Colorectal Cancer MCN wrote to the NOSCAN senior management team requesting that concerns they had with regard to the continued CWT delivery requirement and how they were impacting on other service delivery and the potential for resource exhaustion be raised with the Scottish Cancer Task Force (SCTF). [Appendix A] Their request was duly discussed at the SCTF meeting held on 8 th December 2010, where the views expressed by the NOSCAN CRC MCN were contested, and Mr Peter King - NOSCAN Clinical Lead - was requested to obtain further evidence from the MCN in support of their concerns. [Appendix B] The following paper is a response to that request for additional information. It details both the background and progress made to date in the North of Scotland with regard to CWT, before suggesting an alternative and appropriate way forward that both acknowledges the public aspiration for shortened and measurable targets, but which are also clinically meaningful, measurable and sustainable within existing (and foreseeable) service resource. The authors believe the findings presented will be mirrored elsewhere. Background: As has been set out in Cancer Scenarios (2001), colorectal cancer is a common malignancy in the combined male and female population (Harris et al, 1998), with approximately an equal male to female ratio overall for both incidence and death When records first commenced in 2004 (Oct Dec), there were 171 referrals, compared to 316 patients (screened excluded) referred during the same period in 2010, which is an increase of 84.7% 2 ISD New Cancer Waiting Times Table 1b: Performance against the 62-day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by Cancer type 3 There are some minor gender differences between on which side colonic primaries tend to be found and in the predominance of rectal primaries 4 Latest figures (for 2008) indicate that colorectal cancer is third most commonly diagnosed cancer in both men and women in Scotland, and in 2009 was overall the second leading cause of cancer death (totalling 1555 out of a 15,119 total). Page 7 of 31

8 However, large improvements in survival are beginning to be seen In Scotland for cancers of the colon and rectum, with around 55% of patients now surviving at least five years after diagnosis (compared to only around 38% of those diagnosed between ). Though improvements in peri-operative care, and more aggressive and effective Systemic Anti Chemotherapy Treatment (SACT) and other intervention modalities (such as secondary surgery or radio frequency ablation, or RFA) may have individually or in combination contributed in part to the increase in survival, early detection and diagnosis of these cancers remains very important in helping determining options for treatment and increasing the probability of cure for the patient. 5 As has also been set out in Cancer Scenarios (2001), there is regrettably little evidence or little prospect of benefit thought to be gained through primary or preventive interventions with respect to colorectal cancer, though data continues to be collected and further investigative studies are being progressed with regard to this. However following the demonstrated benefits to be gained form controlled trials of faecal occult blood testing (FOB) when combined with subsequent screening of selective populations and polypectomy and a pilot screening programme conducted in NHS Grampian and NHS Tayside, a national programme of bowel screening commenced roll-out across Scotland (in June 2007). This programme is anticipated to further increase early detection, and thereby improve patient outcomes. However evidence to date 6 indicates that overall and excepting in a few specific cohorts (ie some groups of females in each of NHS Grampian, NHS Orkney, NHS Tayside and NHS W.Isles), uptake remains currently at around only 53% overall for both sexes combined, and which is significantly less than the national target of 60%. Furthermore, when looking in more detail at overall screening uptake in relation to colorectal cancer, social deprivation (SIMD) and sex, it is only in females within the least deprived populations that the screening uptake exceeds the target 60% (for all Board areas excepting NHS Lanarkshire) Since it is well documented that social deprivation equates very strongly with both late presentation and poorer outcomes (Coleman et al: 2004 & Shack et al: 2007), this persistent low uptake (especially with regard to males in NHS Lanarkshire where it is as low as 34.2% ) continues to be of particular concern. A further unanswered concern, as was first suggested by Hardcastle et al (in 1989), and by Kay and Witte (in 1991) is that there is risk of screening test bias in the detection of slowgrowing cancers which may never have become apparent during the patients lifetime. As has been recently suggested by the Lanarkshire Colorectal Study Group (Macdonald et al. 2011), this brings into question once more the accepted view to date of the perceived public health benefits to be gained overall from the existing strategies with regard to colorectal malignancies and early intervention. Cancer Waiting Times (or CWT): In December 2000 the Scottish Executive published Our National Health: A plan for action, a plan for change, which set out the first treatment targets specifically for cancer patients. With regard to colorectal cancer this was that: By 2005, the maximum wait from urgent referral to treatment would be two months [which was further defined as 62 days] Following on from this, and to account for patients for whom it is not clinically appropriate to expedite treatment, the government announced (in May 2006) a 5% tolerance for the 62-day target: at that time, there was around a 65% compliance nationally with the 62-day requirement. Since then (in October 2008), the Scottish Government published Better Cancer Care, an Action Plan that announced new targets to reduce waiting times for cancer treatments by 5 Clark AJ, Stockton D, Elder A, Wilson RG, Dunlop MG. (2004) Assessment of outcomes after colorectal cancer resection in the elderly as a rationale for screening and early detection. British Journal of Surgery. 91: Scottish Bowel Screening Programme - Key Performance Indicators Concise Report: May 2010 data submission [Accessed 22/04/2011] Page 8 of 31

9 2011. For the first time, these targets were to also include patients referred from the cancer screening programmes (ie breast, colorectal or cervical), and any direct referral to hospital (for example self-referral to A&E) The Action Plan also saw the introduction of a new 31-day from decision to treat target for all patients diagnosed with cancer (whatever their route of referral), and which was also to be delivered by Subsequently from the quarter ending December 2011, the scope for new waiting time targets has been defined as follows: 95 per cent of all patients diagnosed with cancer to begin treatment within 31 days of a decision to treat being made and 95 per cent of those patients referred urgently with a suspicion of cancer, are required to begin treatment within 62 days of receipt of referral. The current cancer waiting targets, are therefore as follows: 62-day target from receipt of referral to treatment for all cancers. This applies to each of the following groups: o o o any patients urgently referred with a suspicion of cancer by their primary care clinician (for example GP) or dentist any screened-positive patients who are referred through a national cancer screening programme (breast, colorectal or cervical) any direct referral to hospital (for example self-referral to A&E) and 31-day target from decision to treat until first treatment for all cancers, no matter how patients are referred. (For breast cancer, this replaced the existing 31-day diagnosis to treatment target). Progress made to date: Since the concept of Cancer Waiting Times (CWT) was first initiated a decade ago, considerable operational effort and service resource has been expended across Scotland by all of the Boards to ensure that as local service providers they have been able to comply with the required national targets. In Grampian for example and as with most other Health Boards in Scotland not only have a number of individuals been appointed or identified as having special responsibility to ensure that patients so referred are progressed from initial GP referral to first treatment within the timeframe stipulated, but many other clinicians and support personnel from all levels have increasingly also found it to be taking time over from their other clinical priorities or service workload. For example: CWT teams have been established, meetings are scheduled (weekly) to monitor individual referral progress and to precipitate any pathway problems that might be predicted, additional theatre sessions and Initiatives have been implemented, mobile services have been contracted to support core diagnostics, Page 9 of 31

10 services have been re-aligned, IT systems have been developed and implemented, Furthermore, at a national level, CWT definitions have been periodically clarified or reconfirmed and any reasons considered appropriate for data exclusion have been re-defined, with considerable time spent thereafter analysing and interrogating data to ensure reporting consistency with neighbour Boards. However, and despite all of the aforementioned activity above, the most recent figures demonstrate that services are still struggling to deliver compliance for colorectal cancer: the latest CWT figures available (for October to December 2010) 5 would suggest that across Scotland, we are only just (95.6%) managing to ensure that all of the required eligible colorectal cancer referrals start treatment within 62 days of first referral. However, when including those coming through the screening programme, this fell nationally to 90.1% overall (or 79.9% if looking at screen detected patients only). More specifically, in the North of Scotland Cancer Network area 6, the latest CWT figures particular to CRC (Jan March 2011) would suggest that overall, of the 33 eligible referrals (excluding Bowel Screening) made in NHS Grampian during this time, only 81.8% successfully met the 62 day referral to treatment target. 7 Furthermore, and despite however they may have been manipulated or presented to sit comfortably within the required parameters, the CWT figures fail to account for the many other patients who have presented by other routes to the service (ie emergency presentation, nonurgent or routine referral) and have subsequently been diagnosed with a colorectal cancer requiring also to be treated within a specified period (ie 32 days). In NHS Grampian during this period, this amounted to a further 32 patients (65 total) of which 96.9% successfully progressed to first treatment within 31 days of a decision to treat being made. To date, the inability of boards to deliver against required CWT targets has consistently been put down to the failure of local service being able to appropriately align their resources. Whilst this may have been true initially, in light of the greatly increased number of patients now being referred as Urgent Suspected Cancer requiring to be priority investigated, and the requirement for all other cancer patients to meet the 31-day decision to treat requirement, this is no longer applicable. Early analysis of emergent data in NHS Grampian revealed that despite the very best intentions of all concerned to ensure that patients at risk are initially identified by their GP, and thereafter referred, investigated, diagnosed and progress to treatment as speedily as is possible (or at the very least) within 62 days, around 50% of all patients with a colorectal malignancy in NHS Grampian continue to present via the non-urgent or other pathways. When the CWT data is compared with ISD Cancer registration data, and even allowing for a number of different permitted exclusions and any changes in definitions there might have been, we see (Table 1: that nationally across Scotland following the introduction of the CWT, that a fairly consistent and significant numbers of patients subsequently found to have a colorectal malignancy (around 63%), continue to first present via one of the non-usc routes. It was through becoming increasingly aware of this disparity of patient care that first led to the NoS Colorectal Cancer MCN raising concern within NOSCAN 5 Table 1b: Performance against the 62-day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by Cancer type [Accessed 22/04/2011] 6 NOSCAN is defined as including the six health boards of NHS Grampian, NHS Highland, NHS Orkney, NHS Shetland, NHS Tayside and NHS W.Isles 7 ISD New Cancer Waiting Times Table 1b: Performance against the 62-day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by Cancer type Page 10 of 31

11 Table 1: New Colorectal Cancer Registrations [ICD-10 C18-C20] and proportion of Urgent Cancer referrals during year (Scotland: ) National CRC statistics Year New Colorectal Cancer Registrations [ ICD-10 C18-C20] in year* Urgent Cancer referrals during year# n/a (171 last quarter only) (or 29.55%) (or 37.73%) (or 36.79%) (or 35.79%) * ISD Scottish Cancer Registry, Scotland: trends in incidence Numbers of registrations, with crude and agestandardised incidence rates, by age and year of diagnosis ISD Data extracted: September 2010 # Waiting-Times Statistics by Health Board of Diagnosis for Patients Diagnosed with Colorectal Cancer This Excludes patients; who died prior to receiving treatment, who refused treatment, with a patient induced non-clinical delay, who had co-morbidities, for clinical reasons and initially referred to an other non-cancer specialty. Further Analysis of NHS Grampian Data: Methodology In order to provide some objectivity and to support its claim, all of the relevant 2010 data particular to colorectal cancer was pulled by the authors from both the NHS Grampian endoscopy ( Unisoft 8 ) and the NHS Grampian CWT tracking system (Cancer Care Pathways, or CCP 9 ) databases. This was then interrogated to provide a more detailed understanding of the patients journey and to try and understand better the resource that has been required to facilitate the clinical management of all patients who had been diagnosed with a colorectal malignancy in NHS Grampian. Results NHS Grampian ( Unisoft ) data (for the period Jan Oct:2010) indicated that there had been a total of 5156 lower GI endoscopic procedures (3286 colonoscopies and 1870 flexible sigmoidoscopies) performed on patients under the heading of colorectal cancer. Of these, only 247 (or 4.8%) were subsequently found to have cancer. 8 Unisoft is a GI reporting tool developed by Unisoft Medical Systems, which interfaces with other clinical and hospital management systems to provide information on clinical and service activity Iit allows convenient electronic capture of full data on eosophageal, pancreatic and colorectal tumours, and can interface with other electronic patient management or clinical systems. 9 Cancer Care Pathways Database (CCPD) was developed by NHS Grampian in 2005 in accordance with ISD Dataset (covering the waiting times aspects), The initial purpose for CCPD was to support the administration of the cancer waiting timesand was constructed in such a way that other tools could be added to suit any changes to cancer waiting times demands in the future and other associated tasks. CCPD is now used for: - Tracking / reporting the now complex cancer waiting times criteria, throughout NHS Grampian / Orkney / Shetland and cross referral patients to and from NHS Highland / Tayside / Lothian. As an administration tool for all Multi Disciplinary Team meetings both locally and cross border patients. (NHS Grampian / Orkney / Shetland / Tayside / Lothian / Highland. As a clinical tool connecting hospices in Orkney and Western Isle with Consultant Palliative cover in Roxburgh House, Aberdeen. and for carrying out various audits of all cases recorded on CCPD, covering 2006 to present day. Page 11 of 31

12 Table 2: Cases of positive CRC in patients having had an endoscopy in NHS Grampian by referral source (Jan Oct 2010) Data from Unisoft Route of Referral Number of patients Percentage Primary care clinician USC % Screening service % GP referral directly to hospital (A&E or other) % Primary care clinician Routine % Primary care clinician Urgent % Review clinic % Incidental finding 7 2.8% GP referral then admitted to hospital (A&E or 2.0% other) 5 Self-referral to A&E 4 1.6% Other 2 0.8% Referral from private healthcare 1 <0.5% Total number % From the above data (Table 2) it is apparent that only around 25% of patients subsequently diagnosed with a cancer originated via the Urgent Suspected Cancer route, and which is on a par with that which originated via the Screening programme (22.3%) supporting the argument for a low discriminant value for symptoms. These were further broken down to identify route of access (ie elective, emergency, out of hours etc) being established or determined by the colonoscopist (Table 3.) [Note: A more detailed breakdown of figures is provided in Appendix: H] Page 12 of 31

13 Table 3: NHSG Endoscopy requirement for CRC referrals by source (Jan Oct 2009)[Total number of investigations = 5156] Flex Sigmoidoscopy Colonoscopy Elective Repeat Urgent Emergency (in hrs) Emergency (out of hrs) Open access Unspecified TOTAL From the Unisoft data above, it can be seen that the vast majority of patients investigated for CRC originated via the Elective route (ie 2967 or 57.54%), less than 15% (13.59%) of them had first presented during this period either as an Urgent or Urgent Suspected Cancer. Though it is acknowledged that some of the 4909 other patients investigated and found not to have a cancer would clinically have required an endoscopy for assessment or confirmation of other functional bowel problems etc it is nonetheless reasonable to assume that the majority of them were exposed to potential risk of medical complication and investigated needlessly during this 10-month period. 10 Furthermore, on the basis that each procedure costs to undertake, this equates to significant service resource. A separate audit analysis was made of all the CRC referrals received during 2009/10 in NHS Grampian and recorded in CCP. This included: All USC Cancer referrals All Screening referrals All routine / incidental findings / review clinic / consultant to consultant that turned out to be cancer All UNC, routine referrals that were upgraded to USC on vetting and subsequently tracked. but excluded: UNC / Routine GP referrals that were seen at clinic and discharged UNC / Routine direct to test referrals that were scoped and discharged 10 The BSG Guidelines ( Complications of gastrointestinal endoscopy ) published in 2006 have suggested that by its nature lower GI endoscopy is invasive and thus carries with it an intrinsic potential for a range of adverse events ranging from quite mild right up to and including death Furthermore, complications may be either early or late onset and as a result of the pre-preparation or the procedure itself. Though death (within 30 days) is very rare (between around 1:1000 to 1:1500 being reported), most of those occurred in symptomatic patients who were elderly with co-morbidity and at risk from any interventional procedure. Depending on sources, risk of other serious complication combined is however around 1:300 to 1: 500. Page 13 of 31

14 The data was analysed in two ways: firstly to investigate referral type, and thereafter to investigate time to diagnosis. Table 4 (below) shows that of the 2500 referrals received between April 2009 and March 2010, there were a total of 350 cancers treated in NHS Grampian. Of those who subsequently were diagnosed, only 120 (or 34.29%) of them originated via either the Urgent Suspected Cancer or Urgent route, with the remainder presenting by a variety of other pathways. It is worth noting that almost the same proportion of patients presented via one of the Emergency routes (ie GP or direct/self-referral to A&E:19.71%) as did via the Screening programme (21.71%). Further detail is provided in Appendix D. More recent data [obtained from e-case as part of a formal retrospective 2009 NHSG CRC audit: Appendix G] supports these figures Table 4: Colorectal Cancer (by referral type) and treated in NHSG (April 2009 March 2010) GP referral directly to hospital (A&E or other) An Previous GP referral but subsequently admitted to hospital (A&E or other) Incidental finding Other PERCENTAGE Primary care clinician Urgent Suspected Cancer Primary care clinician Urgent Primary care clinician Soon Primary care clinician Routine 26 Referral from private healthcare 5.00 Review clinic Referral Type 3 Screening Self-referral to A&E analysis of time from first referral to diagnosis was also made of the 1944 patients referred in 2010 (Jan Dec) and recorded in CCP, which found that overall of those diagnosed with a CRC, around 65% received a cancer diagnosis within 6 weeks, and when looking at all Screening referrals only, around 79% of patients received a cancer diagnosis within 6 weeks. [Further details in Appendix: E] In a separate medical study in NHS Grampian of all patients referred to the service by Primary Care (screening programme excluded) and diagnosed with a CRC malignancy and discussed at the regional CRC MDT from January 2009 to December 2010 (369 patients), demonstrated that urgency of referral did decrease time to diagnosis. However, the evidence also suggested that this did not adversely affect resection rates or staging, and therefore (by implication), survival (Ramsay G et al 2011). As was intimated to the SCTF in Feb 2010 [Appendix D], a prospective audit analysis has recently been completed of the first 500 patients in NHS Grampian referred by their GP for urgent investigation of colorectal cancer symptoms since 4 th October 2010: the 500 th patient was referred on 15 th April Relevant data pulled from the Grampian CCP Database indicates (on 16 th May) that there remain around 75 patients awaiting completion of initial investigation to either confirm the presence of a malignancy, or which will exclude them from further analysis. To date (out of the Page 14 of 31

15 425 patients on whom the necessary data complete) there have only been 23 receiving a confirmed cancer diagnosis (or around 5.4%) [In addition to the 23 patients isolated from the 500 in the Urgent CRC GP referred group, a further 4 patients have been confirmed as having CRC cancer and presenting to service in NHSG during this time: 2 referred initially with symptoms via UGI pathway, 1 presented as an Emergency Admission (but not via their GP), and 1 patient from the North Isles]. A sub-analysis was made of the 23 identified patients presenting symptoms against the current NHS Grampian referral template (See Appendix I) to try and identify any patterns emerging. However, as can be seen from Table 5, there was no dominance amongst any of the subject group s presenting symptomology [Note: NHS Grampian reviewed its CRC Referral criteria in response to user feedback and to try and specify more clearly the patients at risk according to clinical symptoms in late The pre-october 2010 template is provided in Appendix J for comparison] Table 5: Referral symptoms present Key: CIBH Change in Bowel Habit IDA Iron Deficient Anaemia FH Family History Key Referral Symptoms Frequency Rectal Bleeding, CIBH 1 Rectal Bleeding, CIBH, IDA 2 Rectal Bleeding, CIBH, IDA, FH. 1 Rectal Bleeding, Tenesmus, CIBH 1 Rectal Bleeding, Tenesmus, CIBH 1 Rectal Bleeding, CIBH, R-sided Mass 1 Rectal Bleeding, CIBH, Rectal Mass * 1 Rectal Bleeding, R-sided Mass, Rectal Mass* 1 Rectal Bleeding, Tenesmus, Rectal Mass* 1 Tenesmus 1 Tenesmus, Anal Symptoms, Rectal Mass FH* 1 Tenesmus, CIBH, Rectal Mass* 1 USS / CT Finding 1 IDA, R-sided Mass, weight Loss 2 IDA Weight Loss 1 IDA R-sided Mass 2 IDA 1 Previous colorectal history (not CA) 1 Weight loss 1 CIBH, Weigh Loss 1 Total number 23 A further sub-analysis was made of the duration of Altered Bowel Habit (ABH) to separate those with symptoms of <6 weeks or >weeks duration (Table 6: below) Table 6: Duration of bowel symptoms in patients subsequently confirmed CRC Duration of Symptoms n % < Six Weeks > Six weeks Total Page 15 of 31

16 . This data demonstrates that whilst every one of the patients fulfilled all of the required referral criteria, only the presence of a rectal mass (in 5 out of the 23 patients, or 21%) was subsequently predictive of a final cancer diagnosis. Furthermore, of the patients referred, the majority (or 39%) were within the age group (Table 7:), which lies well within the Bowel Screening Programme. Table 7: Age of patient at time of referral AGE 10 9 NUMBER Series TO TO TO 88 RANGES though it is not known at this stage how many may of these patients had previously participated or declined participation. (The authors intend to explore this data further in due course) Summary Key points: While everyone would wish that CWT are shortened or improved, this needs to be looked at from a strategic perspective and how patients eligibility (criteria), treatment risk and accessibility are aligned to the available evidence Despite all the energies that have been input to date, evidence shows that there has been little difference to outcomes. Furthermore, services are unable to consistently deliver on the targets demanded. GP referral urgency has very low specificity or sensitivity for colorectal malignancy Latest figures (from NHS Grampian) indicate that for every patient fulfilling the referral criteria and referred urgently by their GP for investigation during 2010 and subsequently found to have a colorectal cancer, a further 24 similarly referred patients required to be investigated and excluded. The majority of patients diagnosed with a colorectal malignancy (around 60%) continue to present to secondary care via the non-urgent or routine referral pathways There are risks associated with preventative screening while intellectually exciting, overtreatment presents its own risk Even though the peak age distribution of incident cases for CRC is years (with the highest age-specific rates are in the oldest age groups), current screening is weighted by design towards the younger population cohorts (ie age group). Though prophylactic polypectomy (of Page 16 of 31

17 adenomatous polyps) for this patient group is well intended, it remains uncertain about what impact this has on overall life expectancy, and it may be that resources could be better and more appropriately targeted at the more elderly cohorts.. The majority of patients diagnosed with a colorectal malignancy in NHS Grampian during 2010 were aged 70 years or above [Median age of 73 years in 2009: NHSG CRC Audit] The suggestion that Consideration should be given to the study of screening modalities in the elderly population (p53 Cancer Scenarios: 2001) remains valid Furthermore, assessment of the value of such an approach needs to be urgently reappraised to take into account the overall benefits to society in light of other competing causes of death (Macdonald et al 2011). To quote one operational manager, boards are not allowed to fail with regard to the CWT: regardless of the other competing clinical demands being made of service, they must be met. Consequently, considerable service resource continues to being haemorrhaged away from supporting core service purpose - which must be the delivery of quality and evidence based care - in order only that local services can ensure compliance with constantly evolving targets which have no clinical justification. Conclusion: As was stated in Cancer Scenarios a decade ago, if we are to deliver real and worthwhile improvements in colorectal cancer survival, a coherent strategy of early investigation of symptoms, screening and centralised delivery of specialist multidisciplinary cancer management (page 60) continues to be the only appropriate way forward. The only difference between when that statement was first shared in 2001 and now, is the need to ensure that the revised strategy takes account of: the clinical evidence that has become available the raised public expectation in the interim, and to appropriately reposition them within the revised and more limited - financial landscape that is going to be available to support their successful future delivery. By its nature, colorectal cancer (and bowel disease generally) lacks specificity of symptoms, meaning that in the absence of clearer or more definitive risk criteria being identified, considerable numbers of patients will almost certainly continue requiring to be investigated (and exposed to unnecessary risk of clinical complication and worry) in order to isolate the very few patients who are truly at risk of having malignancy. Furthermore, by continuing to focus on this identified patient group diverts attention and resource from supporting the vast majority (around 60%) of patients who will continue to present via other routes and be diagnosed with a colorectal malignancy. Whilst it may be desirable to offer patients a time limit within which their treatment should be commenced, there is no evidence to date to indicate that accelerated progress from referral to first treatment for patients with a colorectal malignancy affords any benefit on outcomes: what does afford benefit is improved treatment options and rapid access to further therapies thereafter if required. Any new time to treatment requirements therefore, should afford complete transparency, be clinically appropriate and realistically achievable within existing service resources. Page 17 of 31

18 The very real prospect of future revenue constraint demands that we must ensure best treatment is provided to those who will most benefit. Consequently, the authors recommend that the existing 62-day target should be abolished as it is without any clinical significance and simply exhausts resource: as has been suggested by MacDonald et al (2011) it would seem difficult to justify the use of significant resource into fast-tracking patients without distressing colorectal symptoms or to investigate the asymptomatic (page 524) It is suggested that in view of the poor discriminant value of symptoms and lack of significant difference between cancer outcomes in different referral groups, that a more appropriate planning guideline would be 62-days from any pathway to final diagnosis. However, the present 31 day target (from diagnosis to treatment) continues to be a valuable and relevant planning tool in ensuring continued focus on the delivery of tailored, timeous and appropriate treatment for patients with colorectal cancer. Furthermore, and for the purpose of consistency nationally, we would recommend that start times should be the point (and thereby the date) at which the patient is discussed at a colorectal cancer multi-disciplinary team meeting with the necessary diagnostic and clinical information required to arrive at an appropriate treatment decision. This measure would not only be more clinically relevant than those currently in existence, but also highlight any areas of underservice (eg linear accelerator time) and prevent administrative manipulation of treatment times The authors are fully cognoscente of the desire of health strategists and policy makers to be able to demonstrate some form of health improvement in both the short and the longer terms. However, they share the view of MacDonald et al (2011) that any improvement in clinical outcomes must be placed within the context of a background of rising life expectancy within the population generally, whether that be specific to colorectal malignancy or any other health condition. Whereas the focus to date with colorectal cancer has been predominately based on the perceived benefits to be gained from earliest surgical or oncological intervention, the authors would instead recommend that the underpinning cumulative benefits to be gained from the many other health strategies ongoing should be given more prominence. Furthermore, they should be complemented by more clinically appropriate service delivery requirements, rather than to those which simply raise further the concerns and expectations of many. Mr Malcolm Loudon NOSCAN CRC MCN Lead Neil McLachlan NOSCAN MCN Manager (CRC, Gynaecology, Page 18 of 31

19 Haematology & Upper GI Cancer) References: Coleman MP, Rachet B, Woods LM, Mitry E, Riga M, Cooper N, Quinn MJ, Brenner H, Estève J (2004) Trends and socioeconomic inequalities in cancer survival in England and Wales up to 2001 Br J Cancer. 5;90 (7): Hardcastle JD, Thomas WM, Chamberlain J (1989) Randomised, controlled trial of faecal occult blood screening for colorectal cancer. Results for the first 107,349 subjects. Lancet 1: Harris V, Sandridge A L, Black R J, et al (1998). Cancer Registration Statistics Scotland Edinburgh: ISD Scotland Publications. Kay BR, Witte DL. (1991) The impact of cancer biology, lead time bias, and length bias in the debate about cancer screening tests Journal of Ins Medicine 23:102-4 Macdonald AJ, McEwan H, McCabe M, Macdonald A (2011) Age at death of patients with colorectal cancer and the effect of lead-time bias on survival vs elective surgery. Colorectal Disease 13: Ramsay G, Mackay C, Craig W, McAadm TK, Loudon MA (2011) Effects of urgency of referral on outcomes in patients with colorectal cancer. [Poster: AGSBI, Bournemouth. 11 th May 2011] Scottish Executive Health Department (2001). Cancer Scenarios: An aid to planning cancer services in Scotland in the next decade. Edinburgh: The Scottish Executive. Shack LG, Rachet B, Brewster DH, Coleman MP (2007) Socioeconomic inequalities in cancer survival in Scotland Br J Cancer. 8;97(7): [Accessed 22/04/2011] The Scottish Government (2008) Better Cancer Care, an Action Plan. Edinburgh: The Scottish Government [Acessed 22/04/11) 2004 CWT Figures Oct Dec CWT Figures Jan-March e/3 Page 19 of 31

20 Appendix A: Original letter from Mr Malcolm Loudon (NOSCAN CRC MCN Lead) to Mr Peter King (NOSCAN Lead Clinician) NHS Grampian Mr M A Loudon Ward 32 Aberdeen Royal Infirmary Aberdeen AB25 2ZQ Direct Line Fax MAL/EY elaine.young1@nhs.net Mr Peter King Clinical Lead, North of Scotland Cancer Network, Rosehill Annexe Cornhill Road Foresterhill Health Campus Aberdeen AB25 2ZG Wednesday 10 th November 2010 Dear Mr King I am writing to you in my capacity as Lead for the North of Scotland Colorectal Cancer Managed Clinical Network, to request that you table the following item for discussion at the next meeting of the Scottish Cancer Task Force (Wednesday 8 th December 2010). As you will recall, it is now seven years following the piloting and subsequent introduction of the 62 day target for the diagnosis and treatment of patients referred urgently with suspected cancer. Last year this was supplemented by a 31 day limit from a Decision to Treat being made and treatment being commenced. Following a recent period of consultation, with opinion widely canvassed from colleagues involved in the management of colorectal cancer and from all of the 6 Health Boards that constitute the North of Scotland network, the view of the overwhelming majority is that a number of significant negative effects have emerged since the introduction of the Cancer Waiting Times (CWT) in 2003, There is a strong consensus of opinion within the MCN that it is not only important, but timely that these targets should now be critically reviewed in the light of the evidence and experience gained since CWT were first introduced, in order to ensure that they are clinically relevant and fulfil their intended purpose i.e. that patients are at all times afforded care that is of the highest quality and appropriate to clinical need. Appendix A (cont) An additional impetus to this requirement has been given by the developing financial pressures on the health service and the need to achieve maximum clinical benefit from available resources. I need not remind you that as with many cancers, the nature of the presenting symptoms of colorectal cancer often lack specificity, and consequently it will never be possible to accurately identify and clinically prioritise the majority of patients on symptomatic grounds alone. Regrettably, the prevailing view also being expressed within the MCN, is that the organisation has increasingly focussed more on the form of words used in the patient s initial referral documentation, rather than on the actual clinical requirement or expectation of the patient concerned. Furthermore, audit has consistently demonstrated that only around 7% of patients referred through this accelerated pathway have had a final positive diagnosis of cancer. The corollary of this, again evidenced from our audit, is that 80% of patients with a final diagnosis of colorectal cancer arrive via other routes or pathways. The administrative effort required to track the Page 20 of 31

21 Urgent Suspected Cancer patients is in practice considerable, and represents a disproportionate drain on diminishing health resources. Furthermore such processes have the effect of disenfranchising other patient groups, including those who may themselves have serious disease, but who are not prioritised either as a result of not being in a target group or due to the form of wording of referrals. Though it may have some limited pertinence to other tumour specific conditions and a very small subset of patients with bowel disease, the NOSCAN MCN would strongly recommend, that the current 62 day target is dropped on clinical and financial grounds at the earliest opportunity. It is however, the unanimous view of the clinicians who expressed an opinion (representing the majority of those involved in the management of colorectal cancer in the NOSCAN area), that the 31 day target from diagnosis to treatment of patients with colorectal cancer is a valuable and relevant planning tool in maintaining focus on the delivery of tailored, timeous and appropriate treatment for patients with a proven diagnosis of cancer. Furthermore, in the vast majority of cases and in most circumstances, this target should be entirely achievable. We would however strongly recommend that for the purpose of consistency nationally, start times should be the point (and thereby the date) at which the patient is discussed at a colorectal cancer multidisciplinary team meeting with the appropriate diagnostic and clinical information required to arrive at a treatment decision. This would prevent the date of first treatment and thereby the date of the decision to treat potentially being manipulated to fit according to service availability simply to comply with the 31 day target. Appendix A (cont) A further area of concern to many clinicians in the North of Scotland that has resulted consequent to the implementation of waiting times targets, is the increased commodification of patients with a potential for poorer clinical outcomes. A related further undesirable effect is that there is now evidence of considerable and routine sharing of clinical information (some of which is highly sensitive) among administrative staff. In some cases, this information is being made available to those involved only in the tracking of patients, and before the responsible clinicians themselves. At a time such as this, when all aspects of public and health expenditure are being subjected to rigorous re-evaluation, it is the overwhelming and supported view of the NOSCAN CRC MCN that we have an ideal opportunity to demonstrate leadership in re-focussing scarce resources upon areas of greatest patient benefit without a reduction in clinical standards. I would be grateful if you could make the views of the NOSCAN Colorectal Cancer MCN known to the Cabinet Secretary via the Scottish Cancer Task Force within 28 days of NOSCAN having considered them and comment at the next meeting. Supportive audit documentation together with e mail correspondence is available if required. Yours sincerely Malcolm A Loudon Consultant Surgeon and NOSCAN Colorectal Cancer MCN Lead Copies to: Mr Richard Carey - NOSCAN Chair Mr Peter Gent - NOSCAN (Interim) Manager Dr Aileen Keil - Deputy Chief Medical Officer, The Scottish Government and Chair Scottish Cancer Taskforce Dr David Linden Programme Manager, Cancer Performance Support Team Page 21 of 31

22 Appendix B: Response from Mr Peter King (NOSCAN Lead Clinician) to Mr Malcolm Loudon (NOSCAN CRC MCN Lead) Dear Malcolm 10th January, 2011 I want to give some feedback following the waiting times letter that you and your CRC MCN colleagues submitted via myself to the Scottish Cancer Taskforce Group. The letter was subsequently discussed by the Scottish Cancer Taskforce Group on 8th December 10, and as a consequence, Peter Gent (NOSCAN Manager) and I were asked to discuss further with clinical colleagues locally the issues raised within the letter, and also to facilitate some investigation work to understand better the service demand issues. As a network, we share the concerns raised in group s letter and the implications for current service demands and thereby seek to support the clinical teams in moving forward. For the next meeting of the Taskforce I am keen to present some progress around this and share data which may help highlight the current problems. In the first instance we have managed to gather some helpful evidence from within Grampian and would be keen to see if we can build upon this by adding similar data from both Tayside and Highland. The Grampian data has been extracted from the Unisoft and Cancer Pathways tracking database systems, and is illustrated below. In terms of the data currently available I have asked for further refinement of the screening activity in the overall numbers, and anticipate being able to add that to a final compilation. What the available Grampian data appears to suggest is that a large number of scopes are being performed annually for a comparatively small number of patients diagnosed with a positive cancer. Furthermore, it would appear that only 20% arrive via the urgent suspected cancer route. The available data has been further broken down to identify the source of referral for those diagnosed with a positive cancer. By the addition and analysis of any similar Tayside and Highland data, we can hopefully highlight any common themes and report back to the local Boards and Scottish Cancer Taskforce. From the discussions regarding the letter which the group supported, there appeared to be a breadth of agreement across the region around the issues being raised. With this in mind I would invite any questions and further suggestions of how the MCN would like to progress this. I would also welcome any further questions that the data raises with regards to recommendations around pathway management. In terms of sharing data from the other Boards, if it helps I can arrange for a member of the audit team to help pull the data, making sure that you and your colleagues have an opportunity to check over it for accuracy. Mr Peter King Lead Clinician NOSCAN Peter Gent NOSCAN Manager Page 22 of 31

23 Appendix C: From draft minutes of Scottish Cancer Taskforce meeting held on 8 th November FEBRUARY In light of discussions at the previous meeting it was confirmed by Peter King that Malcolm Loudon (Lead Clinician for NoSCAN Colorectal MCN) was undertaking further work to assess cancer pick up rates amongst patients with a referral of suspected urgent diagnosis of colorectal cancer. This work involved prospectively collecting data on these referrals in NHS Grampian. To date 350 such referrals had been looked at with a cancer pick up rate of 3%. Once the data on 500 patients had been collected further analysis will be undertaken. Jennifer Armstrong asked if this was an opportunity to also see how well the investigation guideline for colorectal cancer was being utilised. Peter King advised that this formed part of the work. Aileen Keel was keen to hear further detailed analysis at a future meeting Appendix D: Colorectal cancer referrals (by referral source) in NHS Grampian (April 2009 March 2010) COLORECTAL Number % GP referral directly to hospital (A&E or other) Previous GP referral but subsequently admitted to hospital (A&E or other) Incidental finding Other Primary care clinician Urgent Suspected Cancer Primary care clinician Urgent Primary care clinician Soon Primary care clinician Routine Referral from private healthcare Review clinic Screening Self-referral to A&E TOTAL Page 23 of 31

24 Appendix E: Time from referral to diagnosis NHSG all CRC Referrals during 2010 (n=1944) Selected Colorectal referrals 2010 (n=1944) Numbers Series1 Dx < 6/52 Dx > 6/52 < 8/52 Dx > 8/52 < 9/52 Dx > 9/12 <10/12 Dx >10/52 <11/52 Dx >11/52 <12/52 Dx >12/52 <18/52 Dx >18/52 Delay to Diagnosis Selected Colorectal referrals 2010 (n=1944) Percentage Series1 Dx < 6/52 Dx > 6/52 < 8/52 Dx > 8/52 < 9/52 Dx > 9/12 <10/12 Dx >10/52 <11/52 Dx >11/52 <12/52 Dx >12/52 <18/52 Dx >18/52 Delay to Diagnosis Selected Colorectal Referrals 2010 (n=1944) Number of Days Series1 Mean Median 90th Percentile Values Page 24 of 31

25 All Colorectal Screening Referrals 2010 COLORECTAL SCREENING REFERRALS 2010 (n=760) NUMBER Series Dx < 6/52 Dx > 6/52 < 8/52 Dx > 8/52 < 9/52 Dx > 9/12 <10/12 Dx >10/52 <11/52 Dx >11/52 <12/52 Dx >12/52 <18/52 Dx >18/52 DELAY TO DIAGNOSIS COLORECTAL SCREENING REFERRALS 2010 (n=760) PERCENTAGE Dx < 6/52 Dx > 6/52 < 8/52 Dx > 8/52 < 9/52 Dx > 9/12 <10/12 Dx >10/52 <11/52 Dx >11/52 <12/52 Dx >12/52 <18/52 Dx >18/52 Series1 DELAY TO DIAGNOSIS COLORECTAL SCREENING REFERRALS 2010 (n=760) number OF DAYS Series Mean Median 90th Percentile VALUES Page 25 of 31

26 Appendix F: Principle symptoms of patients (n=23) with confirmed CRC [GP referred] Rectal Bleeding CIBH Rectal Bleeding, CIBH, IDA Rectal Bleeding, CIBH, IDA, FH. Rectal Bleeding, Tenesmus, CIBH Rectal Bleeding, Tenesmus, CIBH Rectal Bleeding, CIBH, Mass Rectal Bleeding, CIBH, Rectal Mass Rectal Bleeding, Mass, Rectal Mass Rectal Bleeding, Tenesmus, Rectal Mass Tenesmus Tenesmus, Anal Symptoms, Rectal Mass FH Tenesmus, CIBH, Rectal Mass USS / CT Finding IDA, Mass, w eight Loss IDA Weight Loss IDA Mass IDA Previous colorectal history (notca) Weight loss CIBH, Weigh Loss Key: CIBH Change in Bowel Habit IDA Iron Deficient Anaemia FH Family History Page 26 of 31

27 Appendix G: Supplementary Information (from Draft NHS Grampian 2009 CRC Audit) Demographics There were a total of 365 patients diagnosed in 2009 with a new primary colorectal cancer, of which 181 (49.6%) were males and 184 (50.4%) were females, and the age range was from 26 years to 96 years [Mean age being 71.6 years and the Median age being 73 years. Referral source Table 1: Age & Sex Distribution Age Male Female n % n % < 40 years years years years years years >= 90 years Total The mode of referral and related urgency is shown in the Table 2 below. The majority (43.2%) of patients were referred by their GP and 21% presented as emergency admissions: the same proportion as via the Screening programme. Table 2: Source of Referral Source of Referral n % GP referral urgent GP referral soon GP referral routine Screening Incidental finding Review Clinic Self referral to A&E GP emergency admission (A&E or other) Previous GP referral but admitted as emergency Referral from private healthcare Total Note: These figures correlate well with the data presented in body of paper, some of which were obtained from other sources ie E-Case Page 27 of 31

28 Appendix H: Endoscopy requirement for CRC referrals breakdown by referral source (Jan-Oct 2010) UNISOFT DATA JAN TO Flex Combined Percentage OCTOBER 2010 Colonoscopy Sigmoidoscopy of total Elective % Repeat % Urgent % Emergency (in hrs) % Emergency (out of hrs) % Open access % Unspecified % TOTAL NHSG Unisoft Lower GI Scopes JAN TO OCT 2010 Elective Repeat Urgent NUMBER Colonoscopy Flex Sigmoidoscopy Emergency (in hrs) Emergency (out of hrs) Open access Unspecified Page 28 of 31

29 Appendix I: Screen shots from current NHS GSCI Gateway USC[GP referral] Appendix J: NHSG GP Referral criteria for Urgent Suspected Cancer (pre October 2010) Introduction This referral template is only for Urgent Colorectal Cancer Referrals Current waiting times for Colonoscopy: - Urgent 2 weeks Non Urgent 6 weeks Patients with one or more of the following clinical signs / symptoms should be referred Rectal bleeding with a change of bowel habit towards looser stools and/or increased stool frequency persisting for 6 weeks or more patients (age >40 years) Rectal bleeding persisting for 6 weeks or more without a change in bowel habit and without anal symptoms (aged >50 years) Change in bowel habit to looser stools and/or more frequent stools persisting for 6 weeks or more without rectal bleeding (age >50 years) Right lower abdominal mass consistent with involvement of the large bowel (any age) Page 29 of 31