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Prepared for the Auditor General for Scotland

A review of bowel cancer servicesAn early diagnosis

March 2005

Auditor General for ScotlandThe Auditor General for Scotland is the Parliament’s watchdog for ensuring propriety andvalue for money in the spending of public funds.

He is responsible for investigating whether public spending bodies achieve the bestpossible value for money and adhere to the highest standards of financial management.

He is independent and not subject to the control of any member of the Scottish Executive orthe Parliament.

The Auditor General is responsible for securing the audit of the Scottish Executive and mostother public sector bodies except local authorities and fire and police boards.

The following bodies fall within the remit of the Auditor General:

• departments of the Scottish Executive eg, the Health Department• executive agencies eg, the Prison Service, Historic Scotland• NHS boards • further education colleges• Scottish Water• NDPBs and others eg, Scottish Enterprise.

AknowledgementsThe report was produced by a project team consisting of Antony Clark, Jillian Matthew andCarole Morton (Colorectal Cancer Screening Project Manager, NSD). Audit Scotland would liketo thank Carole’s employer, National Services Division of the Common Services Agency forallowing her to work on secondment with Audit Scotland during the period of the review.Audit Scotland would also like to thank:• All members of the Expert Advisory Group (Appendix 1), for their guidance and support

during the review.• The lead clinicians and staff at each of the 26 hospitals visited as part of the review.• The lead clinicans of Scotland’s three Bowel Cancer Managed Clinical Networks,

for providing access to their meetings.• Consultant surgeons: Mr Terry O’Kelly, Mr Jim Docherty, Mr Robert Diament and Professor

Robert Steele, for technical advice on matters of clinical practice.• The three Regional Cancer Network Managers and their audit staff, for facilitating the

provision of clinical performance and waiting times data.• Information and Statistics Division, in particular Kathy Clarke (Cancer Information

Coordinator) and David Brewster (Director of Cancer Registration) Cancer Registry, for theirsupport in providing incidence and survival data for inclusion in the report.

• The Scottish Cancer Coalition for their assistance in the recruitment of bowel cancer patientsto participate in our in-depth qualitative research.

Audit Scotland is a statutory body set up in April 2000 under thePublic Finance and Accountability (Scotland) Act 2000. It providesservices to the Auditor General for Scotland and the AccountsCommission. Together they ensure that the Scottish Executiveand public sector bodies in Scotland are held to account for theproper, efficient and effective use of public funds.

Contents1

Summary

Page 2

BackgroundThe studyKey findings

Part 1. Introduction

Page 4

What is bowel cancer?Page 4

Population bowel screeningPage 8

Part 2. Where are we going with

bowel cancer services in Scotland?

Page 9

Has the Health Department set aclear agenda for bowel cancerservices in Scotland?Page 9

How effective have networks beenin improving the quality of servicesand delivering value for money?Page 11

Part 3. Referral and diagnosis

Page 15

Identifying and referring patientsPage 15

Choice of diagnostic methodPage 18

Making best use of existingdiagnostic resourcesPage 19

Part 4. Quality of care and

treatment

Page 22

Coordination of care, communicationand support for patientsPage 22

The quality of clinical management ofbowel cancer patientsPage 28

Patient care before surgeryPage 28

Patient care during and after surgeryPage 33

Clinical audit and follow-upPage 34

Part 5. Waiting times performance

Page 38

How likely is it that the HealthDepartment’s 2005 ‘2-month’ waitingtimes target will be met?Page 38

Waiting times from GP referral toinitial contact with a hospital clinicianPage 41

Waiting time for diagnosisPage 43

Waiting time to surgery or othertreatmentPage 44

Part 6. The agenda for the future

Page 45

The challenge aheadPage 45

Improving management at primarycarePage 45

Making efficient use of resourcesPage 46

Getting the right staff, with the rightskills in the right placePage 48

Improving management informationPage 50

Glossary

Page 52

Appendix 1

Expert advisory groupPage 57

Appendix 2

Bowel cancer clinical compliance withbowel preparation standard 9f (1-3)Page 58

Appendix 3

Bowel cancer clinical compliance withstandard 10 (1-2) margin clarityPage 59

Appendix 4

Bowel cancer clinical compliance withstandard 11c (1-3) anastomicdehiscence after surgeryPage 60

High quality bowel cancer care needs good partnershipworking between GPs and specialist services, effectivecommunication and coordination, and efficient use ofdiagnostic resources.

2

Summary

3Summary

Background

1. Tackling cancer is one ofNHSScotland’s priorities, togetherwith heart disease and mentalhealth.

1

2. Cancer affects almost everyone atsome point in their life, not just thepeople who are diagnosed with thedisease every year in Scotland, buttheir families and friends, and themany health professionals and othersinvolved in their care.

3. Colorectal cancer (sometimesknown as large bowel cancer) is thethird most common cancer inScotland, with on average about3,500 cases diagnosed each year. Itis the second most common causeof cancer deaths in Scotland. Overthe past 50 years its incidence hasrisen and is predicted to continue togrow for the next ten years.

2

The study

4. In carrying out this study on bowelcancer services we:

• reviewed how health bodies areimplementing the Cancer inScotland strategy

• evaluated the impact of the ‘new’cancer monies

• considered how effectivelyregional cancer networks andbowel cancer managed clinicalnetworks (MCNs) are helping toimprove patient care

• examined how bowel cancerservices in Scotland areperforming against clinicalstandards and national waitingtimes targets

• commissioned independent in-depth qualitative research onthe experiences of bowel cancerpatients

• audited the current capacity andperformance of colonoscopy andother diagnostic tests. Thisexercise was to help regionalcancer networks, and the ScottishBowel Cancer Framework Group intheir planning for implementationof a national bowel cancerscreening programme.

5. The review took account of the2002 Clinical Standards Board forScotland (CSBS) national overview ofcolorectal cancer services, andprovides a measure of the progressthat has been made since then inimproving bowel cancer services.

Key findings

6. Our main findings are outlinedbelow and are developed furtherin the main body of the report:

• The future direction for bowelcancer services in Scotland isclear but more emphasis isneeded on securing better valuefrom existing resources (see Part 2).

• Variation in practice by GPs iscontributing to delays in referral(see Part 3)….

• …and better use can be madeof existing diagnostic resources(see Part 3).

• Most bowel cancer patients inScotland receive high quality,well coordinated care (see Part 4).…

• …but many patients are waitingtoo long for diagnosis andtreatment. It is unlikely that thetarget of all patients startingtreatment within two monthsfor all urgent referrals will bemet by the end of 2005 (see Part 5).

• Big challenges lie ahead, butopportunities exist to delivermajor improvements inperformance (see Part 6).

1 Our National Health, a plan for action, a plan for change: Scottish Executive, Edinburgh, December 2000.2 Cancer Scenarios: An aid to planning cancer services in Scotland (03: Colorectal Cancer), Scottish Executive, Edinburgh, 2001.

4


invasion indicates that cancer hasdeveloped. The risk of invasivecancer increases once the polypdiameter has exceeded 1cm. Polypscan be either sessile or pendunculated.

10. About 30% of bowel cancersarise from flat lesions. Thisparticularly occurs with cancers ofthe proximal (right-sided) colon andcaecum (Exhibit 1).

11. If the cancer is not removedquickly, cancerous cells can break offfrom the tumour and move throughveins or lymph vessels to formtumour growths (called metastasesor secondaries) elsewhere,particularly in lymph glands or in theliver. Once this has happened, thecure rate falls sharply.

Symptoms of bowel cancer

12. The most common symptoms ofbowel cancer include change inbowel habit, rectal bleeding,abdominal pain and those associatedwith anaemia, such as pallor andtiredness. The non-specificsymptoms make assessing an

individual’s risk difficult. They alsomean that patients may be referredto a wide range of hospital specialties.

Diagnosis and treatment

13. In cases of suspected bowelcancer, there are two main types ofinvestigation: endoscopy (flexiblesigmoidoscopy or colonoscopy) andimaging (barium enema, computedtomography (CT) and CTcolonography). Each method hasspecific advantages anddisadvantages that make it more orless appropriate for particularpatients.

14. Endoscopy: The maininstruments used in endoscopicexamination of the large bowel areeither a colonoscope or a flexiblesigmoidoscope. A colonoscope is along, thin, flexible tube with a tinyvideo camera and a light at the end.By adjusting the controls it can beguided in any direction to look at theinside of the colon. It can be used toview the whole of the large bowel. A flexible sigmoidoscope is a longthin flexible tube which contains a

What is bowel cancer?

7. Bowel (colorectal) cancer is cancerof the colon or rectum. Around 65%of bowel cancers occur within thecolon and around 35% in the rectum,or the section where the rectum andthe colon join.

8. Bowel cancer develops when cellsin the colon undergo a series ofchanges in some of the genes thatcontrol how the cell divides andsurvives. As a result, the cell dividesuncontrollably to form a clump ofcells. Initially, these cell changesoften produce a pre-cancerous polyp(a clump of abnormal cells the size ofa pea on the end of a stalk of normalcells) called an adenoma. Only aboutfive per cent of polyps progress tobecome life-threatening cancers.

9. The polyp enlarges very slowly,typically over around ten years, tobetween 1cm and about 5cm indiameter. The abnormal cells invadethe stalk of the polyp first, then theunderlying tissue of the colon towhich the stalk is attached. This


Source: Copyright 2005 Nucleus Medical Art, Inc. All rights reserved. www.nucleusinc.com

Exhibit 1Illustration of the anatomy of the large bowel (the colon and the rectum)

5

tiny video camera. Because it isshorter than a colonoscope it canonly reach the rectum, sigmoid anddescending colon as far as thesplenic flexure. For some patients,sedation will be required for either acolonoscopy or flexiblesigmoidoscopy.

15. Using an endoscope to view thebowel has the advantage ofpermitting biopsy andhistopathological assessment of anysuspicious lesion and removal ofpolyps. Colonoscopy involves littlerisk when carried out as a diagnosticprocedure by experienced operators.It is, though, associated with a higherrisk than flexible sigmoidoscopy orbarium enema. The overallprocedure-related mortality isapproximately 1 in 5,000. Themajority of adverse effects occurwhen polyps are removed duringtherapeutic colonoscopies rather thanduring diagnostic colonoscopies.

3

18. Positron emission tomography(PET) imaging (often used incombination with CT scans

6) has in

recent years established itself as atool for restaging recurrent diseasebefore further surgery.

7This

technology is not widely used inScotland as at present there is onlyone PET scanner in the countrywhich is located in Aberdeen,although a national procurementprogramme is now underway.

19. Following the investigationsdescribed above, a definitivediagnosis is made. For patients witha diagnosis of bowel cancer, thereare a number of treatment options:

• Surgery: For most patients,surgery is the first-line treatment.The surgeon will remove theportion of the colon or rectumcontaining the cancer, togetherwith a healthy margin of tissueeither side of the tumour and the

16. Imaging: Barium enema is wellestablished in the NHS. It is safe,widely available, and there is no needfor sedation. CT colonography (alsoknown as ‘virtual colonoscopy’) is arelatively new technology.

4Patients

with abnormal findings may require asubsequent colonoscopy to biopsy orremove suspicious lesions.

17. Ultrasound and CT scans areused to investigate the diseasefurther, usually for staging the cancerrather than for diagnosis. Staging isthe process of determining the size,site and spread of the disease.Magnetic Resonance Imaging (MRI)is used for the staging of rectal andmore advanced colon cancers.Imaging tests are safe but notentirely risk-free. Barium enema andCT colonography carry a lifetimeadditional risk of cancer perexamination of between one in10,000 and one in 100,000.

5

3 Endoscopic perforation of the colon: Lessons from a 10-year study, Monte L, Anderson M D, Tousif M, Pasha T M, Leighton J A.Am J Gastroenterology 2000: Vol 95: 12 3418-3422.

4 CT colonography practice in the UK: a national survey, Burling D, Halligan S, Taylor SA, et al. Clin Radiol 2004; 59:39-435 X-rays. How safe are they? NRPB, 2001.6 PET/CT in Oncology: Integration into Clinical Management of Lymphoma, Melanoma, and Gastrointestinal Malignancies,

Schoder H, Larson M L, Yeung H, The Journal of Nuclear Medicine. Vol 45, No 1, (Suppl) January 2004.7 PET imaging in assessing gastrointestinal tumors, Hustinx R, Radiol Clin N Am 42 (2004) 1123-1139.

6

surrounding lymph nodes to helpreduce the chances of thedisease spreading or recurring.For patients with rectal cancer,the use of total mesorectalexcision (TME) is now routinepractice for cancer in the middleor lower two-thirds of the rectum.The mesorectum is a fatty tissuedirectly adjacent to the rectumthat contains blood vessels andlymph nodes. When rectalcancers recur, it is often in theselymph nodes. TME surgery(removal of the mesorectum)therefore leads to a very low riskthat cancer will recur in this partof the bowel.

• Chemotherapy and radiotherapy:Chemotherapy and radiotherapyare used for patients with bothearly and advanced cancers.Chemotherapy can be given astablets, a weekly injection, aninfusion or continuously through apump after surgery. Radiotherapyis used more commonly to treatcancer of the rectum and can begiven prior to or following surgery.Prior to surgery radiotherapy canbe used to down-stage thetumour. In cases of advancedbowel cancer, chemotherapy andradiotherapy are given to shrinkthe cancer, slow the rate ofgrowth and control any symptoms.

Bowel cancer – the third most

common cancer in Scotland

20. Bowel cancer is the third mostcommon cancer in Scotland for bothmen and women, with on averageabout 3,500 bowel cancer casesdiagnosed each year. It is the secondmost common cause of cancer deathin Scotland. Over the past 50 years itsincidence has risen.

21. It has been estimated that theincidence of bowel cancer willcontinue to increase over the nextten years, with the total number ofcases set to rise from 3,390 in 1995-96 to 4,467 in 2011-15.

8This

projected increase will place asignificant demand on bowel cancerservices.

22. Bowel cancer can develop inmen and women of any age but ittends to be a disease of late middleage or older. In the UK, about 75% ofcases occur in people over the age of 55 (Exhibit 2).

23. Although the exact cause ofbowel cancer is unknown, there areseveral factors that make peoplemore at risk:

• In the UK, 5-10% of all peoplediagnosed with bowel cancerhave a family history of thedisease. Often if there is a familyhistory the disease appears at anearlier age – under 45.

• People who have an inflammatorybowel disease (IBD), such asCrohn’s disease or ulcerativecolitis, tend to be more at risk.The duration and extent of IBD isan important indicator ofheightened risk.

• Those who have had a polypremoved in the past may be at anincreased risk.

• Diets high in fat and low invegetables, combined with aninactive lifestyle, can increase therisk of developing the disease.

• Long-term smoking; it has beenestimated that one in fivecolorectal cancers in the USAmight be attributed to tobacco use.

International comparisons of

incidence and survival

24. A number of powerful studieshave shown substantial variations insurvival from bowel cancer. Theseshow Scotland in an intermediategroup for bowel cancer survival(along with England, Wales, andDenmark), with higher survival ratesthan East European countries, butconsistently lower survival rates thanother Western EuropeanCountries

9(Exhibit 3).

25. It has been argued that theseinternational variations can in part beexplained by the fact that patients inScotland tend to have moreadvanced disease before theycontact the health service,

10, 11but the

availability and quality of clinicalservices are also important.

26. International comparisons doneed to be treated with somecaution. Scotland’s cancer registry isrecognised as one of the best in theworld. The level of completeness ofScottish data gives high levels ofconfidence that published figurespresent a true position of Scotland’s

8 Cancer in Scotland: Sustaining Change – Cancer Incidence Projections for Scotland (2001-2020) An Aid to Planning Cancer Services, Scottish Executive 2004.

9 Clinical Outcome Indicators, Clinical Outcomes Working Group, December 2000.10 Understanding variations in survival for colorectal cancer in Europe: a EUROCARE high-resolution study, Gatta G, Capocaccia R, Sant M,

Bell CMJ, Coebergh JWW, Damhuis RAM, Faivre J, Martinez-Garcia C, Pawlega J, Ponz de Leon M, Pottier D, Raverdy N, Williams EMI, and Berrino F (2000), Gut; 47: 533-538.

11 Are differences in stage at presentation a credible explanation for reported differences in the survival of patients with colorectal cancer in Europe? Woodman C, et al, Br J Cancer, 2001. 85(6): 787-790.


Exhibit 3Incidence (1995) and survival rates (1987-89) for bowel cancer: international comparisons

12

Scotland has a higher incidence and lower survival rate for bowel cancer than most other Western European countries.

Source: Clinical Outcome Indicators, Clinical Outcomes Working Group, (CRAG) December 2000

0

10

20

30

40

50

60

70

80

90

100

Denmark Scotland England Germany Italy Sweden Netherlands France

Male incidence (per 100,000)

Female incidence (per 100,000)

Male five-year Survival (%)

Female five-year Survival (%)

7

Source: Scottish Cancer Registry, Information Services Division (ISD), October 2004

Inci

denc

e ra

te p

er 1

00,0

00 p

erso

n –

year

s at

risk

15-1

9

20-2

4

25-2

9

30-3

4

35-3

9

40-4

4

45-4

9

50-5

4

55-5

9

60-6

4

65-6

9

70-7

4

75-7

9

80-8

4

85+

Male

Female

Age

600

500

400

300

200

100

0

Exhibit 2Incidence of bowel cancer by age and gender, 1997–2001

12 Note: incidence rates for colorectal cancer in England also include Wales.Wales is not included in the English survival rate statistics.

Source: Scottish Cancer Registry, ISD, August 2004

Perc

enta

ge

1987-91 1992-96 1997-2001

One-year survival ratemales

One-year survival ratefemales

Five-year survival ratefemales

Five-year survival ratemales

100

90

80

70

60

50

40

30

20

10

0

8

Exhibit 4Relative survival at one and five years for bowel cancer 1987-89 to 1997-2001

13

There is an upward trend in survival at both one and five years.

performance.14,15,16

However, thereare several other European countrieswhich have less well developedregistries and relatively low levels ofcancer registration. These countriesmay be over-estimating their survivalrates, as the relatively smallproportion of patients for whom datais available may not be representativeof all cancer patients.

27. While Scotland still lags behindits European neighbours, bowelcancer survival rates for both oneyear (up from 67% to 75% for menand from 63% to 72% for women)and five year-survival (up from 44%to 51% for men and 41% to 51% forwomen) are improving,

17 and

Scotland’s most recent statisticsshow a marked improvement insurvival (Exhibit 4).

Population bowel screening

28. A pilot project to establish theeffectiveness of Faecal Occult BloodTesting (FOBT) in screening forbowel cancer started in Tayside,Grampian and Fife in Scotland inMarch 2000 and the West Midlandsin England in September 2000. Theevaluation showed that screeningenabled patients with cancer to beidentified earlier.

29. It is estimated that in the longterm 150 deaths per year could beprevented in Scotland by introducingpopulation screening for bowelcancer.

18In comparison, the current

breast and cervical cancer screeningprogrammes prevent 40 and 26deaths per year respectively.

30. The Scottish Executive HealthDepartment (SEHD) has announcedthat the screening programme will berolled out across Scotland. The SEHDhas convened a bowel cancerframework group which will workwith it and regional cancer networkson implementation.

31. The roll-out of bowel cancerscreening, combined with theincreased incidence of bowel cancerover the next decade, will present asignificant challenge for bowel cancerservices. But ultimately screeningmay also prevent some cancersdeveloping by removing polypswhich might later have becomecancerous.

13 Cases diagnosed 1999-2001 do not have five years' follow-up.14 Registration of colorectal cancer in Scotland: an assessment of data accuracy based on review of medical records, Brewster D, Muir C,

Crichton J, Public Health 1995; 109: 285-92.15 Completeness of case ascertainment in a Scottish Regional Cancer Registry for the year 1992, Brewster D, Crichton J, Harvey JC, Dawson G,

Public Health 1997; 111: 339-343.16 Reliability of cancer registration data in Scotland, 1997, Brewster DH, Stockton D, Harvey J, Mackay M, Eur J Cancer 2002; 38: 414-417.17 Scottish Cancer Registry, ISD, August 2004.18 Cancer Scenarios: an aid to planning cancer services in Scotland in the next decade (03 Colorectal Cancer), Scottish Executive Health Department

(SEHD) (2001) Edinburgh: The Scottish Executive.

The Scottish Cancer Plan and theBowel Cancer Framework providea clear direction for cancerservices, but the absence ofspecific improvement measuresmakes it difficult to judgeprogress.

Scotland’s managed clinicalnetworks for bowel cancer havemade good progress in auditingclinical practice and promotinghigh quality care. But they need todo more to support improvementsin waiting times and make bestuse of resources. Their work, andthat of the three Regional CancerNetworks, has so far focusedlargely on the new funds availableunder the Scottish Cancer Plan,but the real challenge will come inredesigning existing services.

Has the Health Department set a

clear agenda for bowel cancer

services in Scotland?

32. Tackling cancer is one ofNHSScotland’s three clinical priorities.But the Cancer in Scotland strategy(sometimes called the ScottishCancer Plan),

19published in 2001,

acknowledged that more could andmust be done to reduce cancer’simpact. The strategy was designed to:

• help modernise cancer services

• meet waiting times commitments

• deliver Clinical Standards BoardScotland (CSBS) requirements

• provide patients with high qualityfacilities, care and support.

33. To back up the strategy theScottish Executive committed:

• an additional £25 million annuallyring-fenced until at least the endof 2005-06 (Exhibit 5 overleaf).

• £33 million for modernisingradiotherapy equipment

• £87 million to build a new Westof Scotland Cancer Centre

• £1 million annual equivalent forthe cancer services improvementprogramme (CSIP).

34. These funding streams, which arecommonly known as the ‘new cancermonies’ represent significant publicinvestment in cancer services. Theycover all cancer types, not just bowelcancer. At the same time, many otherimprovements in bowel cancerservices have also taken place; forexample, the development of bowelcancer clinical nurse specialists (CNS),and developments in surgical practice.

35. The SEHD published a BowelCancer Framework for Scotland

20in

2004 as the starting point fordeveloping a national strategy forbowel cancer services.

9

Part 2. Where are we going with bowel cancer services in Scotland?

19 Cancer in Scotland: Action for Change, SEHD (2001), Edinburgh: The Scottish Executive.20 Bowel Cancer Framework for Scotland, SEHD (2004), Edinburgh: The Scottish Executive.

Source: Cancer in Scotland: Action for Change Annual Report 2003

10

Exhibit 5Cancer in Scotland: ‘new monies’ 2001/02 – 2003/04

For example:

• survival rates

• waiting times

• equity of access to care

• patient satisfaction.

Efficiency and value-for-money

37. More emphasis is needed onsecuring better value for moneywithin the Cancer in Scotland strategy.The document neither considers thebalance of resources committed topreventing, detecting and treatingcancer, nor does it detail how toachieve value for money in futurepolicies and investments. These areboth important requirements of WorldHealth Organisation (WHO) guidelineson National Cancer ControlProgrammes.

22,23Considering these

factors when developing future

strategies for cancer services inScotland would provide an opportunityfor the health department to linkfuture plans with two importantstrands of government policy:

• the ‘Wanless’ agenda,24

whichanticipates a shift of resourcesfrom treatment to prevention as a central strand of improving NHS performance over thecoming decades

• the ‘Efficient Government’ agendawhich sets challenging targets forcost savings and efficiencyimprovements across all publicservices, including the NHS.

25

More needs to be done in

measuring the impact of these

strategies

36. Cancer in Scotland sets a clearstrategic direction for services basedon high-quality research,

21but it lacks

specific targets for improvement ormeasures to assess the impact andeffectiveness of service changes.There are only six measurable targetswithin the document, and thesederive from earlier national policydocuments such as Our NationalHealth (2000). The bowel cancerframework also concentrates onprocess (policy and service reviews,research and evaluation) rather thanimpact and outcomes. Bothdocuments could usefully includemeasures against which to routinelyassess how cancer services areimproving and the impact of newinvestment and changes to services.

2001-02 2002-03 2003-04

Access to diagnosis and treatment £3,880,000 £7,123,000 £7,007,000

Improving treatment and care £2,240,500 £7,847,500 £7,685,830

Palliative care £1,023,000 £1,909,000 £2,372,000

Staff and technology £2,669,000 £2,858,700 £2,993,700

Making it Happen £990,000 £3,232,000 £2,549,000

West of Scotland Cancer Centre (Beatson) £2,000,000 £2,000,000

Scottish Cancer Research Network £500,000 £500,000

Central implementation costs £100,000 £200,000 £200,000

Total £10,902,500 £25,670,200 £25,307,530

21 Cancer Scenarios: an aid to planning cancer services in Scotland in the next decade, SEHD, (2001), Edinburgh: The Scottish Executive

22 National Cancer Control Programmes: Policies and Managerial Guidelines, (1st edition), Geneva, WHO, 1995.23 National Cancer Control Programmes: policies and managerial guidelines (2nd edition), Geneva, WHO, 2002.24 Securing our Future Health, Wanless Report: Final Report 2002. 25 Building a Better Scotland, Efficient Government – Securing Efficiency, Effectiveness and Productivity, Scottish Executive, Edinburgh, 2004.

Part 2. Where are we going with bowel cancer services in Scotland? 11

The type and scale of service

changes that are required

38. The Bowel Cancer Framework isnot explicit about the scale of changethat is required, for example, it doesnot specify extra endoscopyequipment requirements andadditional staffing numbers. Thedocument also lacks clarity on whetherthe required change will be achievedby further investment, redeployingexisting resources, or a combination ofboth. The SEHD intended the strategyto set the agenda rather than to act asan operational plan for deliveringservice change. Detailed strategies arenow required to address priority areassuch as endoscopic capacity,workforce planning and training. It isplanned that the national bowel cancerframework group, together withrepresentatives from Scotland’s threeregional cancer networks will furtherdevelop the framework in this wayduring 2005.

39. Given the long-term nature of theobjectives set out in Cancer inScotland, sufficient time is needed forits progress to be assessed. The healthdepartment has put in place clearmechanisms for public reporting ondelivery of the Cancer in Scotlandstrategy. There are six-monthlyprogress reports, two annual reports(2002 and 2003) have been publishedand in 2004 Sustaining Change set outthe next steps for cancer services inScotland. This monitoring andreporting, although welcome, isweakened by the absence of specificimprovement measures within theinitial strategy.

Recommendations:

The health department should:

• set clear and specific measuresagainst which progress inimproving cancer services can beassessed and reported (forexample, survival, waiting times,patient satisfaction)

• analyse the balance of resourcescommitted to preventing,detecting and treating cancer

• set out how improvements invalue for money for cancerservices are to be achieved.

How effective have networks been

in improving the quality of services

and delivering value for money?

Regional Cancer Advisory Groups

are working well in delivering the

Cancer in Scotland strategy

40. The Scottish Cancer Groupoversees implementation of Cancer inScotland. It is closely linked to threeRegional Cancer Advisory Groups(RCAGs)

26which provide advice to

their local NHS boards and cancerservices. The three RCAGs are:

• North of Scotland (NOSCAN) –Tayside, Highland, Grampian,Orkney, Shetland and WesternIsles NHS Boards.

• South East Scotland (SCAN) –Fife, Borders, Dumfries &Galloway and Lothian NHS boards.

• West of Scotland (WOSCAN) –Argyll & Clyde, Ayrshire & Arran,Forth Valley, Lanarkshire andGlasgow NHS Boards.

41. The RCAGs have an importantrole in shaping and delivering servicechange, and are designed to act as abridge between the SEHD and NHSboards.

42. They are delivering their core roleof implementing the Cancer inScotland strategy and havedeveloped robust arrangements inrelation to:

• monitoring how the regionalaction plans are being delivered

• reporting publicly via websitesand annual reports

• accounting for the new cancermonies with six-monthlymonitoring reports.

43. There is evidence that they usedthe new cancer monies allocated tothem to relieve immediate servicegaps and pressure points. We found:

• an emphasis on investments thatwere likely to provide a direct andimmediate impact on patient care

• clear links between how theyused the new monies andimprovements recommended bythe CSBS in 2001

• strong local clinical support forinvestment decisions.

Bowel cancer MCN arrangements

are working well to address issues

of quality and clinical practice

44. Managed Clinical Networks(MCNs) are linked groups of healthprofessionals and organisations fromthe community (GPs and others),general hospitals and specialistcentres. These groups work togetherto ensure that high quality, clinicallyeffective services are provided

26 HDL(2001)71 Cancer in Scotland: Action for Change, Regional Cancer Advisory Groups (RCAG).

Source: Modified version of NHS HDL(2001)71, Annex 2

12

Exhibit 6The relationship between RCAGs, SEHD, health boards and MCNs

• sharing and discussing clinicalaudit data

• promoting consistent practice toaddress issues of equity

• maintaining and improving clinicalstandards

• developing high-quality patientinformation.

47. The West of Scotland (WOSCAN)bowel cancer MCN has beenparticularly successful in addressingequity of access to services andconsistency of clinical practice. Forexample, it has developed astandardised follow-up protocol forthe whole of the West of Scotland,and produced a network-widestandardised and evidence-basedpatient information pack.

48. But there are three areas wherethe MCNs do not comply withguidance from the healthdepartment. These are:

• accreditation by NHS QualityImprovement Scotland (NHS QIS)

• the circulation of staff betweenprimary and secondary care

• value for money.

49. NHS QIS is currently in theprocess of accrediting Scotland’sthree regional cancer networks and itis anticipated that, if successful, theywill be given a role in quality assuringthe work of the tumour-specificMCNs in their own area.

50. Although the MCNs have not yetaddressed the issue of the circulationof staff between primary andsecondary care, it is not clear whatvalue circulation of staff in this waywould add to bowel cancer services.

51. Value for money is dealt withlater in the report (See parts 3 and 6).

equitably.27

MCNs report to their localRCAG. They are seen by the ScottishExecutive (SE) as the ‘cornerstone ofthe new planning process for cancerservices’ and the main vehicle for theredesign of services, particularly forbowel and lung cancer services

28

(Exhibit 6).

45. MCNs were expected toredesign bowel cancer services byApril 2002 to improve patients’experiences of care and deliveringwaiting times and CSBS standards.

29

Bowel cancer MCNs were in place inthe West and East of Scotland by2002 but took longer to introduce inthe North of Scotland, where theMCN only became fully operational in2004.

46. The three bowel cancer MCNshave progressed at different pacesand with different emphases. Allhave made good progress inaddressing clinical issues by:

Scottish ExecutiveHealth Department

Managed Clinical Networks

Managed ClinicalNetworks

Managed ClinicalNetworks

27 MEL (1999)10 Introduction of Managed Clinical Networks within the NHS in Scotland.28 Cancer in Scotland: Action for Change, chapter 9, SEHD (2001), Edinburgh, Scottish Executive.29 (HDL(2001)71), Cancer in Scotland: Action for Change, RCAG.

South East of Scotland RCAG

& Unified Boards (SCAN)

North of Scotland RCAG

& Unified Boards (NOSCAN)

ScottishCancer Group

West of ScotlandRCAG

& Unified Boards(WOSCAN)

Part 2. Where are we going with bowel cancer services in Scotland?

Source: Audit Scotland 2005

Exhibit 7The contrasting management and accountability models of mainstream service arrangement and RCAGs/MCNs

There are inherent tensions between traditional lines of accountability and the influencing model of network working.

agenda is being delivered in cancercare.

32Capturing meaningful

information which links expenditurewith activity and ultimately outcomesof cancer services in this way is,however, not easy as many servicesprovided by NHSScotland (radiology,endoscopy, pathology, outpatientsclinics) are not cancer specific.

Delivering mainstream service

change through network working

will be a major challenge

54. The challenge of improving bowelcancer services needs to beconsidered in the wider context ofmodernising the NHS in Scotland.The Scottish Parliament has in recentyears increased NHS spending,including additional funding for cancerservices. However, the future agendafor modernising the NHS in Scotlanddepends increasingly on securingmore efficient and effective services(including reallocating existingresources) rather than relying onadditional funding.

33,34,35

13

A better understanding of the cost

and performance of existing

cancer services is needed

52. Financial monitoring of Cancer inScotland focuses almost entirely on thenew cancer monies with littlereference to spending on staff andequipment tied up in existing cancerservices. But the new cancer moniesreflect only a small fraction of overallspending on cancer services. Althoughthe health department is currentlyunable to identify what proportion oftotal NHS Scotland costs is dedicatedto cancer services,

30estimates by ISD

indicate that £460 million was spent oncancer care in 2003/04, making the £25million of new monies equate to 5.4%of total cancer spend.

53. Better cost and performanceinformation is needed to manage theservices and identify expenditure ontreatment, detection, andprevention.

31This information would

also help the department to assesswhether the ‘Efficient Government’

Scottish Executive Health Department (SEHD)

Scottish Cancer Group

Regional Cancer Advisory Groups(WOSCAN, SCAN, NOSCAN)

Managed Clinical Networks

Responsibility fornew monies butno authority overmainstreamservices

NHSBoards

Clear line ofaccountability &responsibility formainstreamservices

30 The Cost of Cancer Care in Scotland 2002, B M J Graham, ISD Cancer Information Group, 2 September 2003 (Final Version).31 Securing our Future Health, Wanless Report: Final Report 2002.32 Building a Better Scotland, Efficient Government – Securing Efficiency, Effectiveness and Productivity, Scottish Executive, Edinburgh, 2004.33 Ibid34 The Politics of Health Divergence, Scott L Greer, The Constitution Unit, University College London. Institute of Public Policy Research (IPPR) Seminar,

16 September 2004, Edinburgh.35 The Barnett Formula, Robert Twigger, Economic Policy and Statistics Division, House of Commons Library, Research Paper 98/8, 12 January 1998.

55. The RCAGs and MCNs havemade good progress in using newmoney to build capacity and improveservice quality, and in promotinghigh-quality clinical practice. Work hasalso begun on more strategic serviceshifts. There is little evidence yet, ofsignificant progress in securing theefficient use of mainstream NHSresources dedicated to bowel cancercare and improving value for money.

56. The SEHD will face a majorchallenge in delivering significantmainstream change to servicesthrough the network arrangements.There are inherent tensions betweenthe two different models ofmanagement and accountability ofNHS boards and RCAGs/MCNs. NHS boards have a direct linemanagement relationship with thehealth department, whereas theirrelationships with the RCAGs andMCNs are based on negotiation andinfluence. Networks have no directresponsibility or authority over the

14

use that is made of the mainstreamcancer services. Yet, it is onlythrough redesigning existingmainstream cancer services, whichaccount for around 95% of cancerservices in Scotland, that efficientpatient-centred services will beachieved (Exhibit 7, page 13).

Recommendation:


• consider how best to deliverimproved efficiency and theredesign of existing serviceswithin the network-basedmodel of working

• develop a more sophisticated(programme-based)understanding of current spendacross all aspects of cancerprovision (tumour types,prevention, detection andtreatment), and use this as thebasis for future decisions onhow to allocate resources

• develop formal measures for reporting on the cost andperformance of current cancer services.

National referral guidelines havebeen prepared to help GPs identifythose patients who should bereferred to hospital for specialistdiagnostic tests, but GPs do notalways follow these guidelines.Fewer than half of health boardshad agreed formal referralarrangements with primary care.This can lead to inconsistentreferral information, making itdifficult to identify the mostappropriate diagnostic tests forindividual patients, or initialreferrals being directed to non-specialist staff. Both can lead todelays in diagnosis.

The choice of diagnostic methodcan also be complicated, andneeds to take account of thepatient’s symptoms, age, familyhistory and other risk factors,together with the relative benefits,risks and costs of the diagnosticmethods themselves. This is

important to diagnose patientsaccurately, reduce waiting timesand make best use of finiteresources. In spite of this, only 5out of 26 hospitals (19%) providingbowel cancer services in Scotlanduse risk-based diagnosticpathways to guide the choice ofdiagnostic method, although allothers are working to introducethem. Some hospitals offercolonoscopy as the maindiagnostic test for almost allpatients, regardless of theirsymptoms. This is not costeffective.

Identifying and referring patients

Why GP referral guidelines are

important

57. Promptly identifying and referringpatients suspected to have bowelcancer is essential if they are tobenefit from high quality care. But itis not a straightforward processbecause the most common

symptoms are non-specific, occurrelatively frequently in the generalpopulation, and have a wide varietyof causes. This can lead to problemswith diagnosis, and referral to a widerange of hospital specialties. Also, aGP will see on average only one newcase a year (Exhibit 8 overleaf).

58. Most of the delays between theonset of symptoms and the start oftreatment for bowel cancer occuroutside of hospital (either before thepatient visits his/her GP, or whilstunder the care of the GP).

36This

highlights the importance ofeducating the public aboutsymptoms which may indicate bowelcancer.

59. The SEHD and the Association ofColoproctology have preparednational evidence-based referralguidelines for suspected cancer.

37,38

These help GPs identify patients whoshould be referred to hospital forspecialist diagnostic tests. The referralguidelines recommend that GPs carry


36 Delay in diagnosis and treatment of symptomatic colorectal cancer, Holliday, H W and Hardcastle J D (1979), Lancet 1, 309-311.37 Scottish Referral Guidelines for Suspected Cancer (NHS HDL (2002) 45), SEHD, 2002. 38 Guidelines for the Management of Colorectal Cancer (2001), The Association of Coloproctology of Great Britain and Ireland. London, 2001.

15

16

Source: Diagnosis of colorectal cancer in primary care: the evidence base for guidelines. William Hamilton and Deborah Sharp. Family Practice, 2004, Vol. 21, No. 1, 99-106

Exhibit 8Incidence of rectal bleeding in the community and in primary careThe figures have been adjusted to an approximate GP list size of 2,000 patients.

out a clinical examination of therectum and abdomen for patientswith symptoms of bowel cancer.

60. Earlier research in this area hasraised concern about the extent towhich GPs undertake theseexaminations.

39Evidence shows that

patients who are not given a rectal orabdominal examination at their firstmedical consultation experienceconsiderably more delays in beingreferred for a specialist opinion.

40

We found that some GPs fail toundertake rectal or abdominalexaminations. A third of patientsinterviewed reported major delays attheir GP practice before referral tohospital for diagnosis for this reason.It would be wrong to generalise toowidely from these findings, especiallyas the presentation of gastrointestinalsymptoms in general practice isoften vague. But it does show thatthe way some patients are managedin the community could be improved.

Quotes from patients:

“The first two years, at GP level, Iwasn’t aware I had colorectal cancer. I kept presenting with this bleeding.He said ‘Oh, don’t worry about it. It’sonly haemorrhoids…If it’s notbothering you, just let them...’However, I did have other symptoms.I work for the manufacturing industryand I have to have a yearly medical,and the yearly medical said I hadanaemia. I was also very lethargic andI reported that to the GP but theynever seemed to link it at all. Whydidn’t they pick up that there wassomething wrong... instead of thisdamned two years?”

(Respondent 7)

“That is what he actually said: ‘Thelonger it goes on, the less likely it isto be anything serious.’ This is aqualified GP.”

(Wife of Respondent 10)

Are GPs and hospitals working

well together to improve referral?

61. National bowel cancer referralguidelines, which specify whichpatients are to be referred, and towhom, should be used to develop andagree formal referral arrangementsbetween local GPs and hospital-basedspecialists. For GPs, however,responding to a large number ofcondition-specific protocols can be asignificant burden. This means thatprotocols between specialist hospitalservices and GPs need to besupported by good liaison andcommunication. Writing and agreeinglocal protocols is relatively easy,securing effective implementation andcompliance is a greater challenge.

62. There is some evidence thatwhere jointly agreed protocols are inplace GPs will be better at identifyingsuspected bowel cancer. This in turnleads to speedy referral to theappropriate hospital specialists withclear benefits for patients (Goodpractice example 1, quote byrespondent 9).

2,000 population

280-660 have rectal bleeding sometime in their life.

280-380 have rectal bleeding in last year, 44 for the first time.

14-30 report it to their GP

One has bowelcancer

39 Delay in diagnosis and treatment of symptomatic colorectal cancer, Holliday, H W and Hardcastle J D (1979), Lancet 1, 309-311.40 Delay in the diagnosis of colorectal cancer, MacArthur, C and Smith, A, Journal of the Royal College of General Practitioners,1983, 33,159-61.

Part 3. Referral and diagnosis 17

Good practice example 1Primary/secondary care interface/triage – Borders Colon Service

divisions in Scotland have agreedreferral guidelines and protocols withGPs (Exhibit 9 overleaf).

65. Even where referral protocols arein place, most hospitals reportedpoor compliance in the use ofstandard referral forms. This leads toinadequate referral data, making itdifficult to identify the mostappropriate diagnostic test(s) forindividual patients, and can lead todelays in diagnosis. The need forprogress in this area has beenrecognised by the three RCAGs.

66. There are practical resourceissues which are acting asconstraints on progress in this area.Developing and agreeing referralprotocols takes time and carries anopportunity cost. Many specialistservices have, over recent years,been working hard to ensure thattheir multi-disciplinary workingarrangements are effectivelyorganised. This has left little space fordevelopmental work with primary care.

67. The health department plans tomake the referral process moreefficient by introducing electronicreferral systems between GPs andhospital services. Technologicalchanges of this kind can helpimprove performance, but they needto be complemented by local workwith GPs and hospital specialists.This is particularly challenging in largeurban areas and geographicallywidespread areas.

68. These technological changes alsopresent the opportunity for improvedinformation on referral and diagnosisto be captured at a national level.

69. Identifying those GP practiceswhere improvement is necessary willbe a challenge for NHS boards. GP diagnostic and referralperformance is not routinelymonitored and this will not changeunder the new General MedicalServices (GMS) Contract. Of the 146 quality indicators withinthe new contract only two relate tocancer, and neither of these concern

63. The non-specific nature of bowelcancer symptoms means thatpatients with symptoms are ofteninitially referred to gastroenterologydepartments. Therefore it is importantthat other hospital departments andbowel cancer specialists also agreeformal arrangements so that theappropriate onward referral of patientsruns smoothly.

41

Patient quotes:

“I went to my GP and said to him thatI’d had some rectal bleeding. Hecouldn’t find anything but he said ‘Ithink I’ll send you in to the consultant’…He just said ‘Well as it’s unexplainedand it’s rectal it’s got to be investigated,one way or another’. You don’t knowwhether it’s going to get worse!”

(Respondent 9)

64. Since the 2002 CSBS review ofbowel cancer services in Scotlandlimited progress has been made inthe agreement of referral protocolsbetween GPs and hospital services.Less than half of the acute hospital

Objective

The objective of the Borders Colon Service is to streamline clinical activity by having a single referral point, in theform of a clinical coordinator for all patients requiring colonic investigation. Depending upon presenting symptoms,medical history, or the suspicion of colorectal cancer, patients are then triaged to radiology, colonoscopy, or for asurgical opinion. There is an agreed referral protocol with local GP practices.

Why was this needed?

Prior to this service, patients attending their GP with colonic symptoms were referred for investigation andassessment by multiple routes. The period of time until diagnosis was unnecessarily extended by multiple referralswith trips back to the GP in between. There were also often multiple referrals (eg, referrals by GP for both bariumenema and colonoscopy) which increased waiting lists unnecessarily and often led to unnecessary clinic visits andtests. All disciplines functioned independently and were not necessarily aware when a diagnosis has beenreached.

What are the benefits of the new service?

• The waiting time for urgent barium enema appointments has dropped from 3-4 weeks to nine working days, and the yearly volume of barium enemas has also reduced.

• Urgent colonoscopy waiting times have reduced from 8-10 weeks to approximately two weeks.• The number of inappropriate barium enemas performed as a precautionary stopgap until a colonoscopy

appointment could be booked has dramatically reduced.• Most patients only have one test performed and are diagnosed more quickly.

41 CSBS standards for the care of patients with colorectal cancer (standard 1) – essential criteria.

18

Source: Audit Scotland fieldwork 2004

Exhibit 9Proportion of acute divisions which have agreed referral guidelines with primary care

Limited progress has been made in this area since the earlier CSBS reviews.

Choice of diagnostic method

70. The Scottish IntercollegiateGuidelines Network (SIGN) guidelineon managing bowel cancer identifiesthree methods which are effective inthe primary diagnosis of bowelcancer, but it does not specify whichshould be the investigation of choice.

71. The most recent review of theevidence suggests that flexiblesigmoidoscopy is the mostappropriate initial investigation for themajority of patients with symptomsthat suggest possible lesions in theleft (descending or distal) colon,sigmoid or rectum.

42This is because

it is relatively quick, virtually risk-freeand because there is evidence tosuggest that for patients whopresent with symptoms alone(usually rectal bleeding, changedbowel habit or pain), furtherinvestigation after a negative flexiblesigmoidoscopy is rarely necessary.Ongoing research to furtherstrengthen the evidence base in thisarea would be of value.

72. Diagnostic colonoscopy is usuallyappropriate for patients with right-sided symptoms, except for thosewith palpable masses, for whomimaging (barium enema or CT) islikely to be more suitable. If acomplete colonoscopy is notachieved and clinical doubt remains,imaging is necessary. When patientspresent with iron deficiency anaemia,investigation should continue untilthe cause is found.

Value for money in diagnostic

testing

73. As well as having varied clinicalrisk, the time and resources requiredto carry out each test varyenormously. The average time toconduct a colonoscopy in Scotland isbetween 30 and 45 minutes, overtwice as long as an average flexiblesigmoidoscopy (15 minutes).

the speed or quality of diagnosis andreferral of suspected cancer patients.Given that GPs are likely on averageto see only one new bowel cancercase per year, it would beinappropriate for specific informationon this condition to be routinelymonitored. Instead, ongoing dialoguebetween specialist bowel cancerservices and primary care colleaguesshould provide a means foraddressing poor compliance with localreferral guidelines. Any significantfailures of performance should beresolved through local primary caregovernance arrangements.

Recommendations:

• The national bowel cancerframework group should reviewexisting GP referral guidelinesand work with health boards inraising awareness of risk factorswith GPs.

• All NHS boards should agree localreferral protocols between GPsand specialist bowel cancerservices.

42 Effective Health Care, Vol 8, No 3, 2004, The Management of Colorectal Cancers. The University of York Centre for Reviews and Dissemination, 2004.

2002 2004

Formal arrangements are in place for thereferral of suspected bowel cancerpatients, jointly agreed between GPs andspecialists working within the bowel cancermultidisciplinary team.

39% 46%



Perc

enta

ge

0

10

20

30

40

50

60

70

80

90

100

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Colonoscopy

Flexible sigmoidocopy

Colonoscopy & Flexible Sigmoidoscopy as a proportion of all lower endoscopy activity

19

74. Some hospitals offercolonoscopy as the main diagnostictest for almost all patients, regardlessof their symptoms. This offers poorvalue for money, and is unlikely to bethe best approach for all patients.

75. Data collected from several sitesacross Scotland show a considerablerange in colonoscopies and flexiblesigmoidoscopies undertaken as aproportion of all lower endoscopyprocedures: from 94% colonoscopyand 6% flexible sigmoidoscopy to54% colonoscopy and 46% flexiblesigmoidoscopy (Exhibit 10). Given thatover 35,000 lower gastrointestinalendoscopies were carried out in2003/04,

43a change in the balance of

lower endoscopy proceduresundertaken would have significantimplications for throughput and theefficient use of resources.

Making best use of existing

diagnostic resources

76. There are long waiting times forroutine diagnostic tests at many sitesin Scotland, but there is a developingbody of evidence which shows thattargeting the most expensive andtime-consuming diagnostic teststowards those patients with thehigher risk symptoms can lead tosignificant efficiencies in the use ofresources and reduced waitingtimes.

44,45Clinicians in Scotland have

already begun to develop risk-baseddiagnostic models, building on theresearch which has taken place inEngland in this area (Exhibit 11 andGood practice example 2 overleaf).The Bowel Cancer Framework Groupis currently considering how this workcan be rolled-out across Scotland sothat diagnostic tests (colonoscopy,flexible sigmoidoscopy and bariumenema) are effectively targeted andvalue for money achieved.

How common are risk-based

diagnostic models in Scotland?

77. Currently less than one in fivebowel cancer services in Scotland haverisk-based diagnostic pathways inplace, although the rest are working todevelop and introduce them. In themeantime, individual clinical preferenceis often the most important factor indetermining which diagnostic testspatients receive, rather than theirsymptoms or other risk factors such asage or infirmity. This means that somepatients are being exposed tounnecessary risk and the NHS is notdelivering value for money resources.Availability of staff and equipment alsoskew clinical practice, with cliniciansoften opting for those tests with theshortest waits; for example, wherethere are long waits for colonoscopy,clinicians may shift to flexiblesigmoidoscopy and barium enema.

43 Scottish Cancer Registry, ISD.44 M R Thompson, I Heath, B G Ellis, E T Swarbrick, L Faulds Wood, W S Atkin. Identifying and managing patients at low risk of bowel cancer in general

practice. BMJ: 2003. 327; 263-265.45 The diagnostic value of the common symptom combinations of bowel cancer in a surgical clinic. M R Thompson, A Senapati, S Dodds, 2004 (awaiting publication).

Exhibit 10Variation in colonoscopy and flexible sigmoidoscopy activity

Hospitals

20

Good practice example 2Gartnavel Hospital, NHS Glasgow (North)

Surgeons at Gartnavel General Hospital have published a randomised trial46

that shows that patients with largebowel cancer symptoms referred by GPs should go directly to an appropriately staffed direct-access large bowelinvestigation unit. The Clinical Nurse Specialist in bowel cancer vets and triages all referrals into one of threetreatment pathways:

• Direct access colonoscopy, flexible sigmoidoscopy or barium enema

• Nurse-led clinic

• Consultant-led clinic.

The benefits of this approach are that:

• Most patients are able to have their investigations completed at one hospital visit.

• Consultant time can be directed towards those patients with more complex symptoms who are likely tobenefit from it

• Waiting times have reduced by 10-14 weeks.

As the cost per patient in the consultant-led group was almost £105 more than the direct-access large bowelinvestigation unit, this approach has the potential to deliver savings.

Exhibit 11Risk-based strategy for investigation of suspected bowel cancer patients in secondary and intermediate care

Patients can be stratified towards appropriate diagnostic test depending upon risk.

Source: A pragmatic and risk-based strategy for managing patients with rectal bleeding and associated symptoms (Draft 2). Terry O’Kelly (paper presented toBowel Cancer Framework Group, 7 January 2005)

Symptomatic individuals

Higher risk features

Lower risk features

Asymptomatic individualaged 50-69 Faecal OccultBlood Test (FOBT) positive

Colorectal cancer screening Symptomatic service

Colonoscopy Colonoscopy Flexible sigmoidoscopy and barium enema

Flexible sigmoidoscopyOutreach serviceIntermediate care

First choice investigation

Secondary route to accommodate demand and take account of waiting times

46 MacKenzie S, Norrie J, Vella M, Drummond I, Walker A, Molloy R, Galloway D.J, O'Dwyer P.J. Investigation of large bowel symptoms. British Journal of Surgery 2003; 90, no. 8: 941-947(7).

Part 3. Referral and diagnosis 21

How good is colonoscopy practice

in Scotland?

78. Colonoscopy is likely to remain asan important diagnostic test forsuspected bowel cancer patients forthe foreseeable future. It is importanttherefore that high quality colonoscopyservices are available in Scotland.

79. Recent publications47

haveacknowledged that currentendoscopic practice across theUnited Kingdom is variable and thereare concerns that within Scotlandcurrent practice does not conform tothe standards set out in ScottishIntercollegiate Guidelines Network(SIGN) and British Society ofGastroenterology (BSG) guidelines.

48

If risk-based diagnostic models aremore commonly adopted, fewercolonoscopies are likely to beneeded. This could help rationalisecolonoscopy within properly trainedspecialist teams.

80. In England, £8.2 million has beenmade available through the NationalCancer Plan to fund endoscopytraining over the years 2003-06. Thishas funded three national trainingcentres and seven regionalendoscopy training centres.

81. In Scotland, the issue of trainingfor endoscopists to address capacityand quality-related issues has beenrecognised by the SEHD within theBowel Cancer Framework forScotland.

49The bowel cancer

framework group will be consideringthe overall quality of colonoscopy,initial training and regular refreshercourses, peer review and continuousaudit of standards during 2005.

82. We found strong evidence thatthe availability of qualified staff is asignificant constraint on the utilisationof existing endoscopy resources inScotland (see Part 5). If Scotland is notto lag behind England in terms ofendoscopic capacity and practice, it is vital that endoscopic training isgiven prominence, and funding ismade available.

Recommendations:

• NHS QIS and SIGN shouldincorporate guidance on risk-based model(s) for diagnosingsuspected bowel cancerpatients when reviewingexisting clinical standards forcolorectal cancer.

• NHS QIS should developquality indicators forendoscopic practice.


• determine how endoscopytraining in Scotland will besupported

• introduce an accreditationprogramme for endoscopypractitioners (current and future).

47 Palmer K, Morris A I. A snapshot of colonoscopy practice in England: stimulus for improvement. Gut 2004;53:163-165.48 Bowles C J A, Leicester R, Romaya C, et al. A prospective study of colonoscopy practice in the UK today: are we adequately prepared for national

colorectal cancer screening tomorrow? Gut 2004;53:277-83.49 Scottish Executive Health Department (2004). Bowel Cancer Framework for Scotland (p.13). Edinburgh: The Scottish Executive.

22

Multi-disciplinary teams (MDTs)are working effectively at almostevery hospital in Scotland thatprovides bowel cancer services.Good progress has been made indeveloping information forpatients, and in training staff ineffective communication.

Patients generally feel thatcommunication is honest and clear,and that they are included indecisions about their treatment.They particularly value thecontribution that clinical nursespecialists (CNS) make incoordinating care and offeringsupport to patients and their families.However, national guidance on theirrole is needed to ensure theirexpertise is directed to best effect.

Most hospitals comply with clinicalstandards. But, a small number ofstandards have not kept pace with

Part 4. Quality of care and treatment

clinical practice and are in need ofupdating. Clinicians at somehospitals need to record moreaccurately the care that patients arereceiving if they are to demonstratethat standards are being met.

Coordination of care, communication

and support for patients

Bowel cancer MDTs in Scotland

83. Good cancer care requires thecollaboration of professionals fromdifferent disciplines.

50This principle is

reflected in:

• Cancer in Scotland51

• Clinical Standards Board forScotland (CSBS) (now NHSQuality Improvement Scotland,(NHS QIS)) clinical standards

52

• Scottish Intercollegiate GuidelinesNetwork (SIGN) national clinicalguidelines on the management ofbowel cancer.

53

Bowel cancer MDTs in Scotland –

an improving position

84. In 2001, the CSBS nationaloverview of bowel cancer services inScotland reported that all trusts inScotland recognised the value of amulti-disciplinary approach to makingdecisions and planning how theytreat patients:

54However, at that time

only half of the trusts had clearlydefined bowel cancer MDTs whichmet on a regular basis and haddeveloped local protocols for themanagement of bowel cancer.

85. In 2001, the majority of truststhat were unable to meet thestandard failed to do so for one ormore of the following reasons:

• because specific elements of thebowel cancer service, such as theoncology and/or pathologyservices, were not provided on-site

• difficulties with finding anappropriate time for all of the

50 Department of Health and Welsh Office. A policy framework for commissioning cancer service. A report by the Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. Calman-Hine report. London, UK: Department of Health,1995.

51 Cancer in Scotland: Action for Change – 05. Improving Cancer Treatment and Care, SEHD 2001.52 CSBS, Clinical Standards, Colorectal Cancer (Standard Statement 2 – Multi-disciplinary Working), CSBS, January 2001. 53 Scottish Intercollegiate Guidelines Network, 67: Management of Colorectal Cancer. A national clinical guideline. SIGN, March 2003.54 National Overview: Colorectal Cancer Services. CSBS, March 2002.

Part 4. Quality of care and treatment 23


MDT arrangements across acute divisions in Scotland

Bowel cancer MDT in place

Alternative MDT arrangements in place

No MDT arrangements in place

69%

23%

8%

69%

23%

8%

Exhibit 12Multi-disciplinary care planning arrangements for bowel cancer patients – 2004

Good progress is being made across NHSScotland in implementing MDT planning for bowel cancer patients.

88. The core membership of a bowelcancer MDT attends ‘almost always’or ‘frequently’ at over 90% of thesites in Scotland which have anoperational MDT in place (Exhibit 13overleaf) (ie, 9 out of the 13 acutedivisions). At most sites the MDTwas clearly seen as the focal pointfor all major care planning and reviewdecisions. At several sites the MDTwas central to the whole bowelcancer service and served as a forumfor assuring clinical audit data,reviewing overall service quality andidentifying improvements.

89. Patients recognise and value theimportance of multi-disciplinary careplanning:

Patient quote

“What difference do you think itmakes, that they get together to lookat the scans?”

(Researcher)

“I'm more confident. Now I feel, bythem all working as a team, if one ofthem misses... It actually was spelledout to me, coz I talked about thisteamwork, and they said 'If one of ushas a concern, then we'll bring all theothers in'.”

(Respondent 7)

“How well do clinicians andoncologists communicate together?”

(Researcher)

“Well I would say 100% because, asI've said, they work as a team. In thisparticular hospital, it is all a team. It'snot just the oncologist. It's thesurgeon, the radiologist andeverything.”

(Respondent 7)

90. There are areas where MDTworking can be strengthened:

• Radiology shortages acrossNHSScotland affect the ability ofradiologists to participate fully inbowel cancer specific MDTmeetings, with radiologistsattending 'almost always' at justover 60% of sites.

essential members of the team tomeet (although this was beingovercome in some areas throughthe use of teleconferencing)

• staff vacancies.

86. In 2002, only 43% of bowelcancer services had MDTarrangements in place. Since then,there has been a 26% increase inMDT planning for bowel cancer inNHSScotland (Exhibit 12).

How well are MDTs working?

87. The CSBS standard sets out theminimum ‘core’ membership for abowel cancer MDT. It is:

• surgeon

• oncologist

• pathologist

• specialist nurse

• a radiologist and colonoscopist co-opted when necessary.

55

55 Clinical Standards Board for Scotland. Clinical Standards – Colorectal Cancer, 2001.

24


Perc

enta

ge

MDT Attendance

Never

Occasionally

Sometimes

Frequently

Almost always

0

10

20

30

40

50

60

70

80

90

100

Lead

col

orec

tal c

ance

r sur

geon

Spec

ialis

t col

orec

tal c

ance

r nur

se

Lead

pat

holo

gist

Oth

er s

urge

ons(

s)

Non

-sur

gica

l onc

olog

ist

Rad

iolo

gist

Stom

a ca

re n

urse

Regi

stra

rs/S

enio

r Hou

se O

ffice

rs

MD

T cl

erk

Clin

ical

aud

it/ef

fect

ivene

ss s

taff

Nur

se e

ndos

copi

st

Phys

icia

n

Pallia

tive

care

phy

sici

an

Pallia

tive

care

nur

se

Phar

mac

ist

Exhibit 13Frequency of attendance at bowel cancer MDTs by professional discipline

Recommendation:

• Regional Cancer AdvisoryGroups should ensure that allacute divisions are compliantwith the CSBS standard forbowel cancer MDTs.

Pathology: at the centre of the MDT

91. Pathology is the diagnosis andmanagement of disease through theprocessing and examination of cellsand tissue. It has a major role inmultidisciplinary management ofbowel cancer services.

92. After surgery, pathologicalexamination of the resectionspecimen helps determine prognosisand decide treatment. For thisreason, the pathologist is a keymember of the core multidisciplinarybowel cancer team and often leadsthe discussions at MDT meetings.

93. The specialty is, however, facingparticular problems in staffing andresources. This has beenacknowledged by the healthdepartment in commissioning theScottish Pathology Action GroupReport

58and the Recruitment,

Training and Retention of MedicalLaboratory Scientific Officers(Biomedical Scientists) report.

59

94. We found no evidence that staffshortages were affecting the speedof pathology reporting for bowelcancer services. This may, however,mask difficulties in other non-cancerpathology services.

Bowel cancer clinical nurse

specialists (CNS)

95. The role of bowel cancer CNS hasdeveloped since the early 1980s whenit emerged as a distinct area building onstoma care, palliative care and otherrelated disciplines. The role is nowrecognised as an important aspect ofpatient care.

• Clinical audit staff attend 'almostalways' at just over a third ofMDT meetings.

• MDT coordinators are only inplace at 40% of sites despite theguidance that they be appointed

56

on the basis that betterorganisation of meetings leads tomore efficient use of time andallows more patients to bediscussed. It also results in morepatients being managed inaccordance with guidelines. Theabsence of dedicatedadministrative support for MDTsmeans that at many sites clinicalnurse specialists (CNS) orconsultant surgeons were forcedto spend time ensuring thatagendas were prepared, patients’records collected: a questionableuse of their valuable time.

57

56 Cancer Services Collaborative ‘Improvement Partnership’. Multidisciplinary Team Resource Guide [monograph online]. London: NHS Modernisation Agency, 2004.

57 Kelly MJ, National Cancer Service Collaborative colorectal cancer workshop, (2002) Birmingham (minutes).58 Scottish Pathology Action Group SEHD Unpublished Data.59 The Recruitment, Training and Retention of Medical Laboratory Scientific Officers, (2001) SMASAC.



MDT arrangements across acute divisions in Scotland

Dedicated bowel cancer CNS

Combined bowel cancer CNS/nurse endoscopist

Combined bowel cancer/stoma/benign disease nurse

Combined bowel cancer/stoma nurse

Combined bowel cancer/oncology nurse

Combined bowel cancer/oncology/stoma nurse

Combined bowel cancer/oncology/endoscopy nurse57%

10%

3%

17%

7%

3%3%

57%

17%

10%

7%

3%

3%

3%

Exhibit 14Bowel cancer clinical nurse specialists roles

96. Bowel cancer CNS play animportant role in coordinating thecare of patients and providingreassurance through what can be acomplex and worrying series ofencounters with the health service.

97. Bowel cancer CNS are nowrecognised as central to bowelcancer services. At many sitesdoctors had been instrumental insecuring funding to create and fillthese posts, demonstrating the valuethat surgical and medical staff placeon this role. At the time of ourfieldwork, all NHS boards in Scotlandhad at least one bowel cancer CNS inpost, and they were in place atalmost every hospital site in Scotlandthat provides bowel cancer services.

98. A significant minority of bowelcancer patients will require atemporary or permanent stoma. Forthem, access to a stoma CNS isvitally important. These specialistnurses provide pre and post-operative support and care to bowelcancer patients and are importantmembers of the care team.

99. Patients reported varying levelsand types of contact with bowel nursespecialists. They were reported towork very well with surgeons at thetime of initial diagnosis, and beforeand after surgery. As well asemotional support and guidance, theyprovided patients and their carers withdetailed information about treatmentand prognosis, and acted as anongoing point of contact. In a numberof cases they also recommendedsources of further information, forexample, on the internet, andsometimes provided emotionalsupport to other family members. Thisinformation enabled patients to feelmore in control of their lives.

100. At some sites, they played animportant role in co-ordinatingtreatment and care by liaisingbetween the other professionals inthe multi-disciplinary care team; forexample, finding out test results,arranging appointments and helpingto minimise delays in care.

Patient quotes:

“She is the bowel cancer specialistnurse who works with the clinicianunder who I am being treated. Andshe is my link. If I want to talk to theoncologist, she is the person I wouldchat to first about whether I need aclinic appointment or whether Iwould do it over the phone. Shesupports people going through theclinic… she is very much the supportperson who helps you get a handleon what is going on for you.”

(Respondent 3)

“She has 20 years’ experience.Seven years colon rectal. Great helpto the coordination. To make itstreamlined.”

(Respondent 10)

Bowel cancer CNS roles

101. Although clinical standardsrequire that all patients with bowelcancer have access to a namedcancer nurse with expertise in bowelcancer,

60there is no national guidance

on how this specialist role should beorganised; for example, how manyCNS might be required per hospital,

60 Clinical Standards Board for Scotland. Clinical Standards Colorectal Cancer (January 2001) Standard Statement 2c (Multidisciplinary Working) Essential Criteria 1.

26

what qualifications they should holdand what their role might entail. Thereis little reliable information that wouldpermit estimates to be made of howmany CNS in cancer are needed,where and for what purpose.

61This

has led to a wide variety ofapproaches being adopted to meetingthat particular clinical standard (Exhibit 14, previous page). CNS are avaluable, highly-skilled resource and itis important that their expertise isdirected where it can bring best effectso that value for money is achieved.

102. In general this diversity reflectsthe conscious decision by localbowel cancer services to develop thelocal bowel cancer CNS role to meetlocal needs and circumstances in acost-effective way. For example,where the volume of bowel cancerpatients does not justify a dedicatedbowel cancer role it is common forthe bowel cancer CNS role to becombined with other cancer or gastrointestinal related activities.

103. However, there was evidencethat where the bowel cancer CNSrole is split with another aspect ofpatient care, the joint role wasperceived by some patients to benegatively affecting the quality ofcare (See quote by respondent 8).The tension between developing thebowel cancer CNS role cost-effectively whilst at the same timemeeting the needs of all patientsclearly needs careful management.

Patient quote:

“She didn’t come to me. I assumedit was because I wasn’t goingthrough chemotherapy… Myhusband says I should have (seenthe nurse specialist). He said he feelssomebody should have spoken tome before and after.”

(Respondent 8)

104. A number of workforce planningactions are included within the recentlypublished Framework for NursingPeople with Cancer in Scotland

62so

that a consistent approach to the CNSrole can be introduced throughout thecountry. This will allow sufficientflexibility for local service needs to bemet while at the same time providingassurance that value for money isachieved. As part of that process thehealth department should considerhow cost-effective split bowel cancerCNS roles can be introduced withoutcompromising the needs of allpatients. It should also clarify therespective roles of specialist andgeneralist nurses in the planning anddelivery of care (Good practiceexample 3).

Recommendation:

The health department shouldconsider issuing guidance on goodpractice in relation to:

• the role of the bowel cancerCNS, so that their expertise isdirected to best effect

• coordination of the dual CNS role to avoid compromisingpatient care.

The importance of providing good

communication and information

to bowel cancer patients

105. Information and communicationdirectly affect the patient’sexperience of NHS services. TheScottish Cancer Plan

63made a

commitment that patients and theircarers must be:

• involved as equal partners indecisions about their care andtreatment, and

• provided with the informationthey need, when they need it.

106. The CSBS Clinical Standards for Colorectal Cancer

64also require

services to provide patients withinformation, and to communicatesensitively with patients and theirfamilies.

65

107. In 2001, the CSBS found that all trusts had written informationabout bowel cancer and several haddeveloped local leaflets withadditional information about theservices provided within their trusts.At that time, while some staff hadattended communication skillstraining, these courses were notgenerally attended by senior medicalstaff: the very people who are oftenresponsible for discussing sensitiveor bad news with patients and their families.

61 SEHD (2004). Nursing People with Cancer in Scotland. A Framework. Edinburgh: The Scottish Executive.62 Ibid.63 SEHD (2001). Cancer in Scotland: Action for Change (p. 28). Edinburgh: The Scottish Executive.64 CSBS Standard Statement 4 (Communication and Information Sharing). Essential Criteria 2. Written information leaflets (including information about local

support groups) are available for all patients (including those with disabilities and those requiring translation services).65 CSBS Standard Statement 4 (Communication and Information Sharing). Essential Criteria 1. Patients with cancer receive information about their illness at

all stages. The treatment options are discussed and decisions taken in partnership with the patient. Essential Criteria 3. The breaking of bad news is handled in a sensitive manner.


Good practice example 4West of Scotland Cancer Network (WOSCAN) evidence-based patient information

Good practice example 3A strategic approach to the development of the clinical nurse specialist role

Ayrshire & Arran has a clear and well thought through strategy for the development of CNSacross a range of specialties. The overall approach reflects good practice in a number of ways,as it is:

• Seamless – clear links have been made between CNS and primary care so that there is good coordination and communication.

• Based on shared learning – approaches to knowledge transfer between specialist and generalist nurses, many of whom will care for patients with cancer, are well thought through.

• Sustainable – the acute division has carefully considered how to develop new services and devised effective strategies to integrate them into their mainstream services once specific funding ends.

• Linked to the MDT – CNS are key members of the MDT and are well supported by the team.• Inclusive – supervision and support for CNS staff is well developed, recognising that this

can at times be an isolating role.

In 2003/04, WOSCAN undertook a large scale project to generate a flexible, evidence-basedinformation pack which could be used by professionals across the Network when sharinginformation with bowel cancer patients. It could also be used by patients to keep records and asa document in which they could record questions or queries they might wish to ask theprofessionals who were providing their care. The material has been organised and presentedso that it can be used flexibly in response to the particular needs of individual patients, and canalso be added to as patients’ information needs change over time.

The process of developing the material reflected many aspects of good practice, as it was:

• Patient-centred – research took place with past and current patients to identify what they would like to have known/know.

• Network-wide – all of the patient information currently in use across the WOSCAN area wasgathered, from which the best was selected.

• Evidence-based – teams of patients and professionals graded material according to evidence-based criteria (research, patients’ views).

• Inclusive – plans are in place for versions of the information to be developed for patients who are deaf, blind, or for whom English is not their first language.

• Based on the principles of continuous improvement – the process includes patient and professional evaluation after six months and a re-audit of the materials after two years.

28

Information

108. In 2004, all sites had eitherdeveloped their own information forpatients or were using appropriatematerial prepared by specialistcharities such as Colon CancerConcern, Cancer BACUP orMacmillan Cancer Relief. InWOSCAN, Grampian, and Taysideextensive research had taken placewith patients and their families todetermine the types of informationwhich they found to be of greatestvalue at the different stages ofdiagnosis and treatment (Goodpractice example 4, page 27).

Communication

109. Peoples’ responses andexpectations vary enormously interms of how much information theywant, and when. This makes itdifficult to specify hard and fast ruleson how to communicate withpatients and their families.

110. Clinicians’ communicationregarding diagnoses and treatmentoptions was generally regarded as verygood. In particular, clinicians’ frankness,honesty and willingness to sharemedical information (See patients’communication quotes below).

Patients’ communication and

information quotes:

“She said I have some good newsand some bad and she drew where itwas, why it could not be saved at allbecause it was right on the edge.There was a specialist rectal nursethere. Excellent.”

(Respondent 10)

“I have a great relationship with mysurgeon and oncologist, you know?Not just that (cancer). We talk aboutother things. He’s checking ‘How areyou getting on?’ and discussing my

last scan. I have a slight surgicalhernia now and we discuss that, butwe discuss other little things; youknow, things that we might have alaugh over. A passing conversation. Ithink that’s more personal.”

(Respondent 7)

Patients’ choice quotes:

“So she (the anaesthetist) talkedthrough that and I opted for theepidural because it sounded a betterway of coming through surgeryafterwards and would reduce theamount of pain control I would haveto have in the high dependencyunit.”

(Respondent 3)

“How did that make you feel: tohave a choice?”

(Researcher)

“I was surprised but pleased theydidn’t just do unto me. I felt I had gotsome say in what was going on.”

(Respondent 3)

111. Clearly, these findings reflect inpart the continuing commitmentshown to developing staff skills inthis important area of service quality.However, as in the earlier CSBSfindings, there is continuing evidenceof some senior clinicians failing toengage in training and developmentopportunities concerned withensuring effective communicationwith patients.

Recommendation:

• NHS boards should considerissuing formal guidance oncommunication training forsenior clinicians.

The quality of clinical management

of bowel cancer patients

The overall position

112. There are clear clinical standardsin place for the treatment of patientswith bowel cancer

66which set out the

quality of clinical service that patientsshould receive. They arecomplemented by clinical guidelinesfor the management of bowelcancer.

67We found that most hospitals

comply with clinical standards but:

• a small number of pre-operativestandards have not kept pacewith clinical practice and are inneed of updating, and

• clinicians at some hospitals needto record more accurately the carethat patients are receiving if theyare to demonstrate that standardsare being met (Exhibit 15).

Patient care before surgery

113. Pre-operative diagnostic testsand investigations are essential for allpatients if the extent of the cancer isto be fully assessed and the decisionabout the approach to treatmentmade. Prior to surgery taking placepreparations are also required, forexample, to ensure that antibioticsare administered properly to reducethe risk of infection, and measuresare taken to reduce the prospect ofthe patient suffering from deep veinthrombosis (DVT) after the operation.These requirements are all reflectedin the CSBS preoperativepreparations/investigations clinicalstandards for colorectal cancer.

66 CSBS. Clinical Standards. Colorectal Cancer, January 2001.67 Management of Colorectal Cancer. A national clinical guideline (67), SIGN, 2003.

Part 4. Quality of care and treatment

sigmoidoscope is a lighted tubewhich allows the health professionalto look into the rectum and a portion ofthe lower large intestine (ie, thesigmoid colon). It can be used to takea sample of tissue (a biopsy) from thesigmoid colon.

116. Three sites in Scotland met thestandard. However, at all sites exceptone over half of patients receiveeither or both of these diagnosticinvestigations (Exhibit 16 overleaf).The most reasonable explanations forthe apparent poor performance is acombination of the following:

• the use of rigid sigmoidoscopy has, at several sites, been largelyovertaken by flexiblesigmoidoscopy, a change inclinical practice which is not recognised in the clinicalstandard

• at other sites, clinicians are failingto record in patients’ case notesthat these tests have taken place.This failure of documentationmeans that they are not able todemonstrate whether or not theyare complying with the standard.

Recommendations:

• NHS QIS should review thisclinical standard to ensure that itmore accurately reflects desiredclinical practice, consistent withdevelopment in clinicalmanagement, in this area.

• Bowel cancer MCNs shouldreinforce to clinicians the needfor accurate recording of alldiagnostic tests andpreparations that have takenplace and audit improvements incompliance in this area.

• Bowel cancer lead clinicianswithin acute divisions shouldconsider how best to deliverintegrated record keeping fordiagnostic testing and staging ofbowel cancer patients.

114. We found that:

• only one of the seven essentialcriteria for the management ofpatient care before surgery (9f-2)was fully met at all sites

• one of the seven essential criteria(9f-3) was either fully or almostmet at all sites

• two of the seven essential criteria(9d and 9f-1) were either fully oralmost met at all but one site

• three (9a, 9b and 9c) were unmetat more than one site acrossNHSScotland.

Standard 9a: All rectal cancer

patients are assessed by digital

examination and rigid

sigmoidoscopy

115. For patients with rectal cancer arectal examination is needed toassess whether surgery is possibleand if so whether preoperativeradiotherapy is required. The clinicalstandard suggests that a rigidsigmoidoscope should be used aspart of this process. A rigid

29

CSBS Clinical Standards for Colorectal Cancer

Sites in ScotlandMet Almost met Not met

9a – digital exam & rigid sigmoidoscopy (rectal cancer)

9b – pre-operative visualisation of rectum & colon

9c – pre-operative chest x-ray or CT scan

9d - pre-operative & intra-operative imaging of abdomen

9f-1 – bowel preparation

9f-2 – DVT prophylaxis

9f-3 – antibiotic prophylaxis

10-1 – clarity of distal resection margins

10-2 – clarity of circumferental margins (rectal tumours)

11c-1 – anastomotic dehiscence after colonic anastomosis

11c-2 – anastomotic dehiscence after rectal anastomosis

11c-3 – anastomotic dehiscence with TME for rectal cancer

0 2 4 6 8 10 12 14

Pre-operative management of patients

Post-operative management of patients

0 2 4 6 8 10 12 14Sites in Scotland

Source: NOSCAN, SCAN, WOSCAN

Exhibit 15Bowel cancer compliance with clinical standards across NHSScotland (2002)

30


2002 data by site

9a – Digital exam

9a – Rigid Sigmoidoscopy

CSBS target

1 2 3 4 5 6 7 8 9 10 11 12 13 14

100

90

80

70

60

50

40

30

20

10

0

Perc

enta

ge

Exhibit 16Clinical compliance with Standard 9a – all rectal cancer patients are assessed by digital examination and rigid sigmoidoscopy

Recommendation:

• Bowel cancer MCNs shouldreport back to their RCAG onaction taken to secure sustainedcompliance with the standard.

Standard 9c: Chest X-ray or chest

CT scan is performed

preoperatively for all patients

120. Patients’ chests need to beassessed before surgery to detectwhether cancer has spread to thelung. This standard, that all patientsreceive either a chest X-ray or chestCT scan before surgery, was not metat any site in Scotland (Exhibit 18page 32). The vast majority of siteswere, however, close to compliance.

121. The most likely explanation forour findings relate to the practicalarrangements for reviewing X-rays atmany hospitals. It is common for X-rays to be reviewed by theconsultant surgeon in charge of thecase rather than being formallyreported by radiology staff. If nometastatic disease is found X-rays arenot always returned to patients'records. When checking patients’

records, clinical audit staff are unableto record an X-ray has taken place. Ata practical level this has no negativeconsequences for patient care. It doesthough make it difficult for clinicians todemonstrate compliance with therequired clinical standard. It is alsoinconsistent with the IonisingRadiation (Medical Exposure)Regulations 2000 which came intoforce in January 2001. These specifythat a clinical evaluation of theoutcome of each medical exposureshould be recorded.

68

122. These findings highlightgovernance issues which need to beaddressed by acute divisions andbowel cancer MCNs.

Standard 9b: The rectum and

whole colon is visualised

preoperatively in a minimum of

70% of patients

117. Visualising the rectum andwhole colon of patients with bowelcancer before surgery should takeplace to ensure that no tumours aremissed. The 70% visualisation targetset within the clinical standardsreflects the fact that around 30% ofbowel cancer patients present asemergencies and, for these patientsvisualisation before surgery may notalways be possible.

118. This clinical standard was met atall but three sites in Scotland (11 outof 14) (Exhibit 17).

119. Further investigations are takingplace on the reasons for non-compliance at those three sites (forexample, resource constraints orexceptionally high levels ofemergency admissions) which will bereported to the appropriate bowelcancer MCN. The report will includedetails of any improvement actionsthat need to be put in place to securefuture compliance with the standard.



2002 data by site

9b – Visualisation ofwhole colon

CSBS target

1 2 3 4 5 6 7 8 9 10 11 12 13 14

100

90

80

70

60

50

40

30

20

10

0

Perc

enta

ge

Exhibit 17Bowel cancer clinical compliance with Standard 9b – the rectum and whole colon is visualised preoperatively in aminimum of 70% of patients

Standard 9d: Abdomen is imaged

preoperatively by ultrasound or CT

or MRI or intraoperatively by

ultrasound in a minimum of 80%

of patients

123. This standard is designed to:

• check whether cancer has spreadto the liver

• avoid any inappropriate surgery

• check for fluid in the abdominalcavity, kidney enlargement, and

• assess the extent of the primarytumour.

124. The standard was met at 12 outof 14 sites. Of the two non-compliantsites one was very close to thestandard (79%). As with standard 9b,the appropriate bowel cancer MCN isreviewing the reason for significantnon-compliance at the other site(51%) and will be reporting back toits RCAG on action taken to securesustained compliance with the standard (Exhibit 19 overleaf).

Standards 9f (1-3): Bowel

preparation

125. The purpose of bowelpreparation is to ensure that thebowel is clear of faeces, antibioticsare administered properly to reducethe risk of infection, and measuresare taken to reduce the prospect ofthe patient suffering from deep veinthrombosis after the operation.

126. We found that:

• The target for standard 9f(1), that aminimum of 80% of patientsshould have bowel preparation,was met at 10 out of 14 sites. Allbut one of the four non-compliantsites were close to the standard(53%, 72%, and at two sites 73%).

• The target for standard 9f(2), thata minimum of 70% of patientsshould have DVT prophylaxis, wasmet at all sites in Scotland.

Recommendations:

• Clinicians should ensure that arecord of all chest imaging isplaced in patient notes and thatall chest X-ray films arereturned to the imagingdepartment for reporting.

• Bowel cancer MCNs shouldreport back to their RCAG onaction taken to securesustained compliance with thestandard.

68 Paragraph 8 of the Regulations.

32


Exhibit 19Bowel cancer clinical compliance with Standard 9d – abdomen is imaged preoperatively by ultrasound or CT or MRIor intraoperatively by ultrasound in a minimum of 80% of patients


2002 data by site

Standard 9c

CSBS target

1 2 3 4 5 6 7 8 9 10 11 12 13 14

100

90

80

70

60

50

40

30

20

10

0

Perc

enta

ge

2002 data by site

Standard 9d

CSBS target

1 2 3 4 5 6 7 8 9 10 11 12 13 14

100

90

80

70

60

50

40

30

20

10

0

Perc

enta

ge

Exhibit 18Bowel cancer clinical compliance with Standard 9c – chest X-ray or chest CT scan is performed preoperatively for all patients


• The target for standard 9f(3), that allpatients are to have antibioticprophylaxis, was only met at foursites, although this standardremains consistent with recentresearch.

69 All the other sites were

close to the standard (80-99%)(Appendix 2).

127. The performance in relation toStandard 9f(1) has highlighted an areawhere the clinical standards has notkept pace with developments in bothevidence and clinical practice. There isno compelling evidence that backs upthe selection of 80% as a target figure.In fact, current evidence does notsupport its routine use. The mostrecent SIGN guideline on theManagement of Bowel Cancer

70

recommends that the decision to usebowel preparation must beindividualised according to the patient'sneeds and the surgeon's experience.

Recommendation

• NHS QIS should update standard9(f)1 to bring it into line with mostrecent evidence and currentclinical practice in consultationwith bowel cancer MCNs.

Patient care during and after surgery

128. Performance in this area is verygood, with high levels of compliancewith clinical standards. All of the fiveclinical standards were either fully oralmost fully met at all sites inNHSScotland. Where the standardswere not fully met, all sites wereclose to the target performance level.

Standards 10 (1-2): Clarity of

tumour margin after surgery

129. The aim of surgery for bowelcancer is to remove the primarycancer with a complete outercovering of normal tissue. This outercovering is known as the tumourmargin and exists in threedimensions related to the primarycancer, proximal, distal andcircumferential (lateral).

130. If surgical resection is feasibleand appropriate it is generallyaccepted that a clear margin shouldalways be achievable unless a smallnumber of specific circumstancesexist; for example, if the surgery is apalliative debulking operation.

131. Attaining a cancer-freecircumferential margin can beparticularly challenging in rectal cancerwhich is reflected in the 70% targetset in the CSBS standard 10(2). It isbecause of this added technicalanatomical difficulty that radiotherapyhas a supporting role to surgery in thetreatment of rectal cancer.

132. We found that:

• Standard 10(1), that all distalresection margins for all tumoursare clear, was met at only twosites. However, at all but one ofthe remaining sites, performancewas at over 90%. At one site, thehigh levels of ‘missing data’ madeit impossible for definitivejudgements about performance tobe made. The appropriate bowelcancer MCN is reviewing thepathology data for those patientsto provide assurance thatappropriately high standards ofclinical practice are being achieved.

• Standard 10(2), that a minimum of70% of circumferential margins(for rectal tumours) are clear, wasmet at all sites (Appendix 3).

Standards 11c (1-3): Anastomotic

dehiscence after surgery

133. After part of the colon or therectum has been removed duringsurgery, normal practice is to attemptto join the two ends together again(with the exception of an abdominalperineal excision of rectum wherethe whole rectum and anal canal hasto be removed and the patienttherefore has to have a permanentcolostomy). A recognisedcomplication of a colonic resectionwhere a join (anastomosis) has beenmade is dehiscence or breakdown ofthis anastomosis. This is animportant complication as it leads tointra-abdominal infection and has a highmortality rate (in the region of 50%).

134. We found that:

• Standard 11c(1), that anastomoticdehiscence is not more than 5%after colonic anastomosis, wasmet at all but one site. The non-compliant site is very close to thetarget figure (6%).

• Standard 11c(2), that anastomoticdehiscence is not more than 10%after rectal anastomosis, was metat all but two sites. The two non-compliant sites were both closeto the target figure.

• Standard 11c(3), that anastomoticdehiscence is not more than 20%after anterior resection with TMEfor rectal cancer, was met at allsites (Appendix 4).

69 Glenny AM, Song F. Antimicrobial prophylaxis in colorectal surgery. Qual Health Care 1999; 8: 132-6.70 Scottish Intercollegiate Guidelines Network, 67: Management of Colorectal Cancer. A national clinical guideline. SIGN, March 2003.

34

Recommendation:

• When updating standard 11c(3),NHS QIS should considersetting a more stretchingstandard for future performancebased on current internationalbest practice, in line with its goalof ensuring that targets ofachievement are ratcheted upas performance improves.

Surgical sub-specialisation

135. There is good evidence thatpatients with rectal cancer who areoperated on by a specialist surgeonhave better outcomes than thosewho are operated on by ageneralist.

71However, there is no

nationally accepted definition of whatconstitutes a specialist surgeon. Forthe purposes of our review, weincluded within our definition of aspecialist surgeon someone who:

• has either undergone specialisttraining

• is on the appropriate register ofthe Royal College of Surgeons, or

• is working within a bowel cancerservice where the lead clinicianhas adopted a formal policy of onlyallowing surgeons who have asub-specialist interest in rectalsurgery to operate on patientswith rectal cancer.

136. On that basis, there has been aclear improvement in surgical sub-specialisation in this area over thelast three years (Exhibit 20).

137. Improvements in the levels ofsub-specialisation were found acrossScotland. At every site, at least 75%of patients with rectal cancer wereoperated on by a surgeon with a sub-specialist interest (range 75%-97%).

Updating of clinical standards and

minimum data sets

138. Clinical standards reflect the bestknowledge available at the time thatthey were developed. As soon as theyhave been approved and published,they run the risk of becoming out-datedas a result of developments in clinicalpractice. This situation has arisen with anumber of the CSBS standards forbowel cancer which now present apotentially misleading negative pictureof clinical performance. It wouldtherefore be timely for them to besubject to review.

139. The current clinical standardsprovide for periodic judgements to bemade about the safety with whichchemotherapy is prescribed,dispensed, administered andsupervised through the NHS QISinspection process. Existing clinicalstandards do not, apart from onestandard concerning waiting timesbetween surgery and the start ofadjuvant chemotherapy, provide forthe routine monitoring and reporting ofoncology services for those patientsfor whom oncology is either the maintreatment regime or a significantadjunct to surgery or palliative care.

140. For pathology too, althoughclinical standards are in placeconcerning compliance with the jointnational guidelines minimum data setfor colorectal histopathology, thetimeliness and quality of pathologyreporting is not part of themanagement information that iscaptured for the routine performancemanagement of bowel cancer services.

141. When reviewing existing bowelcancer standards there will be valuein considering:

• where changes need to be madeto reflect changes in currentclinical good practice

• how the standards can bedeveloped so that acomprehensive perspective onthe quality and timeliness of allaspects of bowel cancer care isbest achieved.

142. The results should be clear,measurable and linked to evidence.At the same time as drafting therevised standards, informationrequirements and current dataavailability should be considered and addressed.

Recommendation:

• NHS QIS should consider allthe issues highlighted abovewhen reviewing the bowelcancer clinical standards.

Clinical audit and follow-up

Clinical audit

143. Good progress has been madein bowel cancer clinical audit sincethe 2002 CSBS visits with reliabledata now available nationally.However:

• further work is needed to ensureconsistency of data reportingbetween all three bowel cancernetworks

• improvements are needed atsome sites in the recording of thecare provided to patients onclinical records

• staffing levels are an issue atsome sites. There is evidence ofa clear linkage between adequatestaffing and the extent to whichclinical audit can help the serviceidentify improvements neededand measure whether they arebeing achieved.

71 Martling AL, Holm T, Rutqvist LE, Moran BJ, Heald RJ, Cedemark B. Effect of a surgical training programme on the outcome of rectal cancer in the County of Stockholm. Stockholm Colorectal Cancer Study Group, Basingstoke Bowel; Cancer Research Project. Lancet 2000; 359: 93-6.


Source: Audit Scotland fieldwork

Good practice example 5

2002 data by site

100

90

80

70

60

50

40

30

20

10

0

Perc

enta

ge

2001 2002 2003

Exhibit 20The percentage of patients with rectal cancer in Scotland operated on by a specialist surgeon 2001-03

Surgical sub-specialisation in this area is improving year on year.

Clinical audit

Ayrshire & Arran: combining strong governance and continuous service improvement

There are two ways in which clinical audit in Ayrshire works well. First, as well as coordinating and reporting onnational minimum data sets, clinical effectiveness staff assist clinicians and other staff in analysing local data that isthen used to develop services. Second, the clinical effectiveness role has been designed so that it is integrated withthe routine care of patients.

Continuous service improvement

There are three Lead Cancer Audit Facilitators within the clinical effectiveness department – one covers bowel cancer,gynaecology, upper gastroenterology, and head and neck. Data collection is carried out for local audit and MCN audit,they liaise with QIS and ISD. The MCN dataset is used so they can compare data with other trusts. Regular reports aredistributed to the trust, NHS board and SE. In addition, they respond to requests received for specific audit work fromthe trust and individual consultants, and they support all cancer projects conducted in the trust.

Linking good governance and care planning

The facilitator for the bowel cancer MDT is part of the clinical effectiveness department in Ayrshire & Arran. As partof her role she:

• provides administrative support to the MDT • organises slides and reports • takes minutes which are checked for accuracy by the lead clinician, and • generates letters summarising decisions made at the MDT which are sent to GPs and placed in patients’ notes.

This partnership approach with clinicians linking in with the work of the bowel cancer MDT and supporting widerservice developments has led to clinical effectiveness being seen as part of, and adding value to, the wider bowelcancer service rather than another burden upon hard-pressed clinical and nursing staff.

36


Cos

t (£)

0

500

1,000

1,500

2,000

2,500

1 2 3 4 5 6

Exhibit 21'Average' patient five-year surveillance costs for bowel cancer patients across NHSScotland

Only six datasets are included, as a common follow-up protocol has only been agreed in the West of Scotland and isbeing followed by all acute divisions within the WOSCAN network.

144. The support provided by clinicalaudit departments to colleaguesranged from full involvement in MDTworking and the provision of tailoredad-hoc pieces of data analysis, tobasic level compliance with nationalclinical data returns. The extent towhich clinical audit staff were able toadd value depended critically upon anumber of factors:

• Resources – particularly staff whoare not diverted to other non-auditduties.

• Support from clinicians.

• Specialist training.

• Technology.

145. An extended role for clinicalaudit staff where they are fullyinvolved in organising bowel cancerMDT meetings has begun to evolveat a number of larger acute divisions.For example, Tayside and Ayrshire &Arran. This model ensures that theclinical audit process is fullyintegrated with the routinemanagement of patient care. (Good practice example 5, page 35).

146. These local new approaches toclinical audit support need to bebalanced against the need for regularconsistent reporting of national dataon bowel cancer clinical performance.To date, national reporting has beenco-ordinated in an ad-hoc fashion,relying on the support of the threebowel cancer MCNs. As the nationalbowel cancer framework developsfurther a stronger national lead maybe required by the health department.

Recommendations:

• Acute divisions should:

- recognise that clinical audit andinformation are a central aspectof a quality service and ensurethat staff are not diverted toother non-audit duties

- ensure that IT and auditstrategies are integratedwherever possible to maximiseopportunities to mechanisedata collection and analysis.

• The health department shouldcreate a framework for nationalreporting of bowel cancerclinical audit data under theleadership of cliniciansrepresenting each bowelcancer MCN.

Acute Divisions


Follow-up

147. Patients who have had curativesurgery for bowel cancer arefollowed up for four reasons:

• To detect any spread of thedisease to another part of thebody in the hope that earlydetection and treatment willresult in improved survival.

• To survey the remaining colonand rectum to detect recurrenceand/or other cancer or benignpolyps.

• For the psychological support ofthe patient.

• For audit purposes.

148. The follow-up of bowel cancerpatients although useful forreassurance and surveillance is of littleclinical value and is labour-intensiveand expensive. Follow-up issometimes perceived as low priorityso target dates for surveillance are notalways being met when services areunder pressure.

149. The Association ofColoproctology

72acknowledges the

absence of evidence fromrandomised trials of survival benefitsfrom routine follow-up and cites themost persuasive arguments forroutine follow-up as being patientsupport and audit. It endorses the useof colonoscopic follow-up on thebasis that it has been shown toproduce a high yield of treatableadenomatous

73polyps and cancers,

but recognises the risks to patients ofthe invasive nature of colonoscopy.

150. The most recent SIGNguideline

74recommends follow-up of

patients who have undergonecurative surgery to facilitate the earlydetection of spread of the disease inthe hope that detecting and treatingcancer early will improve chances ofsurvival. It does not specify thefrequency or detailed clinical protocolthrough which follow-up should takeplace. Recent research

75concluded

that, based on available data andcurrent costs, intensive follow-upafter curative resection for bowelcancer is economically justified andshould be normal practice. Furtherresearch is required though to gain afull understanding of the efficacy ofspecific surveillance tools.

151. As part of the audit weexamined local policies in relation tofollow-up and found significantvariations in practice. Using unit costestimates for surveillance of bowelcancer

76we have calculated how the

cost of the different practices varies,as shown in Exhibit 21. For an'average' patient, five-yearsurveillance costs range from £580 -£2,001. Linked with the surveillancecosts are the resource demands thatthe various practices place onNHSScotland.

152. There are also cost andeffectiveness issues associated withwho undertakes follow-up. For thosepatients for whom follow-up is purelypsychological, it could be argued thatusing a CNS rather than physicians orsurgeons to undertake follow-upprovides opportunities to reduce thecost of follow-up. Nurse-led follow-upis beginning to be adopted in severalsites in Scotland. Further research is

required on the cost and efficiency ofnurse-led follow-up. Research intopatient preferences in this area wouldalso be of value, as would researchinto other options such as GP-ledfollow-up.

Patient quote:

“It's a whole team work. It's teameffort looking after you. I'm seeingsomebody nearly every six weeks. Iknow when my scans are this yearand next. I know when all myappointments at the oncologist's andsurgeon's are, right up to a yearahead. It's all ordered. I know that ifthere was a little problem, they'd sortit straight away. Now I don't worry. I know my dates, everything. It putsme a lot more at ease.”

(Respondent 7)

Recommendations:

• NHS QIS should considerissuing guidance on theappropriateness and cost-effectiveness of differentfollow-up models/regimes.

• The health department shouldconsider commissioningresearch on the cost andefficiency of nurse-led follow-up, including patientpreferences in this area.

72 Association of Coloproctology of Great Britain and Ireland. Guidelines for the management of colorectal cancer. London: Association of Coloproctology of Great Britain and Ireland, 2001.

73 An adenoma is a benign tumour.74 Management of Colorectal Cancer. A national clinical guideline (67). SIGN, March 2003.75 Renehan AG, O’Dwyer ST, Wynes DK (2004) Cost-effectiveness analysis of intensive versus conventional follow-up after curative resection for colorectal

cancer. British Medical Journal, 328, 81-4.76 Sources of costs are taken from the Renehan et al. research cited earlier, and are based on estimates including direct, indirect and overhead costs based

on 2002 prices. Sources of cost estimates are from Department of Health reference costs, Gilbert et al., multicentre aneurysm screening study and their in-house financial department.

How likely is it that the Health

Department’s 2005 ‘two-month’

waiting times target will be met?

153. Cancer in Scotland recognisesthe importance that patients placeupon waiting times and the anxietythat waiting for diagnosis andtreatment can create. Our NationalHealth

77pledged that by 2005 the

maximum wait from urgent referralto treatment for all cancers will betwo months.

154. At the time of the 2001 CSBSnational overview report on ColorectalCancer Services ‘it [was] difficult toassess Trust performance againsttreatment standards, particularly wherethose involved waiting times, as therewere inadequate data collection andanalysis systems in place in mostTrusts’.

78Since that time, good

progress has been made and nationaldata is now routinely available.

155. Slow and uneven progress isbeing made in improving overallwaiting times (Exhibit 22).

156. The most recent data whichdistinguishes between urgent andnon-urgent referrals does thoughshow improved performance in thisarea, with six in ten of all patientsreferred urgents by their GP startingtreatment within the two-monthtarget period. If current trendscontinue the 2005 two-month targetwill not be met. (Exhibit 23).

157. Waiting list initiatives monieshave been used at many sites acrossScotland to shorten waiting times fordiagnosis and treatment. Their usehas focused on catching ‘long-waiters’ who would otherwisebreach existing waiting timesguarantees. But it is clear that thegap between current performanceand the 2005 bowel cancer waitingtimes target is so great thatexpanding the use of waiting listinitiatives monies for bowel cancerservices will not be affordable andsustainable in the future. A differentapproach will need to be taken.

Many patients are waiting too longfor diagnosis and treatment. Basedon current trends it is unlikely thatthe target of all patients startingtreatment within two months for allurgent referrals will be met by theend of 2005.

For most patients, the shortest waitis from first clinical contact inhospital to diagnosis; the longestwait is for treatment to start afterdiagnosis. Once patients have beenseen by the clinical team, diagnosisis relatively fast: more than halfreceive a diagnosis within a week,and almost 75% within a month.

Big challenges lie ahead in meetingthe 2005 waiting times target for thediagnosis and treatment of urgentbowel cancer patients andimplementing national bowelscreening in such a way that it doesnot slow up diagnosis and treatmentfor non-screened patients.

Part 5. Waiting times performance

77 SEHD (2001). Our National Health: A plan for action, a plan for change. Edinburgh: SE.78 CSBS. National Overview: Colorectal Cancer Services (p7). CSBS, March 2002.

38

Part 5. Waiting times performance 39

Exhibit 23Performance against the national target, that by 2005 the maximum wait from urgent referral to treatment for allcancer will be two months (October – December 2003 to July – September 2004)

Source: Colorectal Cancer Waiting Times Quarterly Report January 2005 (Compiled by ISD on behalf of the Regional Cancer Networks)/Audit Scotland fieldwork

100

90

80

70

60

50

40

30

20

10

0

Perc

enta

ge o

f pat

ient

s m

eetin

g ta

rget

All urgentreferrals

diagnosedwith bowel

cancer(July -

Sept 2004)

All patientsdiagnosed withbowel cancer

(July -Sept 2004)

All patientsdiagnosedwith bowel

cancer(April -

June 2004)

All patientsdiagnosedwith bowel

cancer(Oct -

Dec 2003)

Nationaltarget

National target

Urgent referrals

All patients diagnosedwith bowel cancer

Source: NOSCAN, SCAN and WOSCAN

Perc

enta

ge o

f com

plia

nce

with

targ

et

All sites in Scotland

1 2 3 4 5 6 7 8 9 10 11 12 13 140

10

20

30

40

50

60

70

80

90

100

Scotl

and a

verag

e

GP urgent referrals only

GP referral totreatment – all referrals

National target

Exhibit 22Illustrates the percentage of bowel cancer patients in Scotland seen within the two-month 2005 ‘urgent referral’waiting times target (July – September 2004)

40


Cum

ulat

ive

perc

enta

ge

1-2

mon

ths

2-3

mon

ths

3-4

mon

ths

4-5

mon

ths

5-6

mon

ths

6-7

mon

ths

7-8

mon

ths

8-9

mon

ths

Diagnosed bowelcancer patients

100

90

80

70

60

50

40

30

20

10

0

3846

5566

8694

98 99 99 99 99 100

1 w

eek

2 w

eeks

3 w

eeks

4 w

eeks

Exhibit 25Bowel cancer waiting times from GP referral to first clinical contact at hospital across Scotland (October – December 2003)

Exhibit 24Average waiting times for the three main stages of the bowel cancer patient journey across Scotland (October – December 2003)

Source: NOSCAN, SCAN and WOSCAN

Perc

enta

ge o

f pat

ient

s

1 w

eek

2 w

eeks

3 w

eeks

4 w

eeks

1-2

mon

ths

2-3

mon

ths

3-4

mon

ths

4-5

mon

ths

5-6

mon

ths

6-7

mon

ths

7-8

mon

ths

8-9

mon

ths

9-10

mon

ths

The time betweenGP referral andinitial contact witha clinician

The time betweenfirst clinical contactand definitivediagnosis

The time betweendiagnosis and firstdefinitive treatment

100

90

80

70

60

50

40

30

20

10

0


Are there specific bottlenecks that

need to be tackled?

158. We analysed detailed waitingtimes information on the three mainstages of the bowel cancer patientjourney (GP referral to initial contactwith a hospital clinician; initial contactwith hospital clinician to diagnosis;and, diagnosis to first treatment) toidentify whether any specificbottlenecks exist within bowelcancer services (Exhibit 24).

159. The data shows a strikinguniformity in waiting timesperformance at each stage of thepatient journey for all patientsdiagnosed with bowel cancer. For thevast majority of patients time fromfirst clinical contact to diagnosis isthe shortest stage of their journey,with time from diagnosis totreatment the longest. This is at leastpartly because the data includesemergency patients. As around 35-40% of all bowel cancer patientsare treated as emergencies,

79this at

least in part explains the relativelygood performance in seeing,diagnosing and treating so manypatients in the first week of care.

The challenge of defining urgency

for suspected bowel cancer

patients

160. The health department hasbeen working with the InformationServices Division and RegionalCancer networks to agree a definitionof urgency which can be used acrossNHSScotland. As a result, accuratedata on the speed of diagnosis andtreatment of ‘urgent’ referrals maynow begin to be captured.

161. The risk of stratifying patients inthis way is that it may lead to a two-tier service, with ‘urgent’ cases beingseen rapidly but significant numbersof ‘non-urgent’ patients (who mayhave cancer) waiting unacceptable

periods of time. In England it wasfound that the introduction of the‘two-week rule’ (‘that all urgent cancerreferrals be seen within two-weeks’)led to longer waits for non-urgentreferrals. Unfortunately, a significantproportion of non-urgent patients wereactually suffering from cancer.

162. The definition of urgency whichhas been adopted is that thosepatients whose referral is marked asurgent by their GP will be classified asurgent referrals. There are sometimesdifficulties in securing agreementbetween GPs and hospital specialistson whether specific patients are‘urgent’. Hospital specialists have inthe past sometimes ‘adjusted’ theurgency of referral either upwards(from ‘non-urgent’ to ‘urgent’) ordownwards (from ‘urgent’ to ‘non-urgent’) based on their ownassessment of risk and urgency.

163. Stratifying patients into urgentand non-urgent groups should notcompromise the care of patients iftackled effectively.

164. In order to address concernsabout the potential creation of a two-tier system by introducingspecific waiting times for urgentreferrals, the health departmentintends to report waiting times forboth urgent referrals and all otherpatients diagnosed with bowel cancer.

Recommendations:

• The bowel cancer frameworkgroup should issue guidance onreferral and triage arrangements/handling of referrals and allocatingpriority in secondary care.

• The health department shouldaudit the implementation ofnational guidance on urgency ofreferral for bowel cancer. This

would allow relative waitingtimes to be measured based onurgency of referral (urgent andnon-urgent), together with therelative proportion of patientsdiagnosed through each referral route.

Waiting times from GP referral to

initial contact with a hospital

clinician

165. If the 2005 waiting times targetis to be met every stage of thepatient journey must proceed in atimely fashion. For the stage from GPreferral to initial contact with ahospital clinician we did not find thatto be the case (Exhibit 25):

• Only 46% of patients acrossScotland are seen within twoweeks (207 patients).

• Only 66% of patients are seenwithin a month (304 patients).

• 20% waited between four andeight weeks (96 patients).

• 14% of patients (63 patients)waited longer than two months.

166. It is possible that real waitingtimes may be longer than this, sincebetween 35% and 40% of bowelcancer patients are admitted asemergencies. As these patients willbe seen straight away, it might bemore realistic to assess waiting timesfor elective care by discounting thepatients who are seen in week one.

167. In England, all urgent bowelcancer referrals should be seen withintwo weeks. There are no Scottishtargets for the time from GP referralto first clinical contact. We found thatonly 45% of patients are seen withintwo weeks and 14% of patients waitlonger than two months.

79 WOSCAN Colorectal Cancer Report 2003.

42

Exhibit 26Bowel cancer waiting times from first clinical contact to definitive diagnosis across Scotland (October – December 2003)


Cum

ulat

ive

perc

enta

ge

All diagnosed bowelcancer patients

100

90

80

70

60

50

40

30

20

10

0

4655

66

8694

98 99 99

6571

7486

92 94 95 96 97 98 99 100

54

1-2

mon

ths

2-3

mon

ths

3-4

mon

ths

4-5

mon

ths

5-6

mon

ths

6-7

mon

ths

7-8

mon

ths

8-9

mon

ths

9-10

mon

ths

1 w

eek

2 w

eeks

3 w

eeks

4 w

eeks

Good practice example 6Single medical/surgical waiting list for diagnostic interventions – Grampian University Hospitals Trust (GUHT)

The Trust Endoscopy Group has persuaded physicians and surgeons to agree to introduce a common list forinvestigations and follow-up of upper and lower GI conditions between GI physicians and surgeons. Mechanismsto achieve this are currently being put in place.

The benefits of such an approach are:

• variations in waiting times are reduced as they are not determined by the activity of individual clinicians• the anxiety which patients experience while waiting for diagnosis is minimised.


Good practice example 7

170. If the 2005 waiting times targetis to be met then performance willneed to improve significantly. The number of bowel cancer patientsseen by hospital clinicians is a smallproportion of total patients withcolorectal symptoms. Only aroundone in ten suspected bowel cancerpatients is actually suffering from the disease, so improving bowel cancerwaiting times performance will havemajor implications for allgastrointestinal services.

171. Each of the three cancernetworks needs to identify the specificservice changes that are needed (ateach site) to deliver the required step-change in performance. Scotland’sthree bowel cancer MCNs have beentasked with identifying their keytargets for improvement actions. Thisbottom-up approach to identify serviceimprovement is more likely to achieveownership and secure change. Somework has already begun in improvingperformance in this area (Exhibit 11,page 20 and Good practice example 6).

Recommendation:

• The three regional cancernetworks’ improvement plansshould be used to inform thefurther development of theBowel Cancer Framework.

Waiting time for diagnosis

172. If the 2005 waiting times targetis to be met, every stage of thepatient journey must proceed in atimely fashion, including waitingtimes from initial clinical contact athospital to definitive diagnosis.

173. We found that:

• the vast majority of bowel cancerpatients (74%) received theirdiagnosis within four weeks offirst contact with a hospitalclinician (Exhibit 26). This reflectsthe relatively high proportion ofbowel cancer patients who areadmitted as emergencies

• 35% of patients waited morethan two weeks, and

168. The reasons for these waitingtimes are complex and include:

• the continued reliance uponpaper-based referral systemswhich creates a ‘paper-chase’ andsignificant delays

• ‘named’ referrals to individualconsultants, which creates delayswhen that consultant isunavailable for reasons such asannual leave or sickness absence

• unclear referral information fromGPs, which leads to potentiallyurgent referrals being treated aseither ‘soon’ or ‘routine’ with aconsequent delay in access

• the impact of the ‘New Deal’ forjunior doctors which has reducedthe time junior doctors are able tospend working with consultantsat outpatient clinics where manyinitial medical/surgicalconsultations take place.

169. There is some evidence thatwaiting times for gastrointestinalphysicians are significantly longer thanthose for bowel cancer surgeons.

NHS Glasgow (South)

Referral process

South Glasgow has developed a risk-based protocol in collaboration with primary care for all patients referred withbowel cancer symptoms. GPs now refer direct to one central point. All referrals are triaged and referred for theappropriate investigation, sometimes without the need to see a clinician. This began in 2002 and is being phased inacross all GP practices in South Glasgow.

The trust records details of patient demographics, symptoms and outcomes on a database. This allows the trust toadapt its risk-based protocol based on evidence and caseload experience.

44

two-month target from referral tofirst treatment and CSBS waitingtimes targets for other stages of thebowel cancer patient journey, it ispossible to infer a target of twoweeks from initial contact todefinitive diagnosis.

176. Some work has already begunin improving performance in this area(Good practice example 7, page 43).

177. It is likely that changes in bothadministrative/organisational anddiagnostic practices – actions whichare already taking place at many sites– will lead to significant improvementsin performance in this area. Theseissues are explored further in thefinal section of the report TheAgenda for the Future.

Waiting time to surgery or other

treatment

178. The CSBS sets a standard thattime between diagnosis and firstdefinitive treatment should be no morethan four weeks (CSBS Standard 8a).We reviewed whether this standardwas being met (Exhibit 27).

179. There is a significant gap betweenthe standard and current performance,with only six in ten patients startingtreatment within a month.

180. Two of the most commonreasons for the delays are:

• routine staging delays (eg, waitingtimes for CT and MR scans forstaging cancer) prior to surgery

• lack of facilities, including theatresand staff.

181. Our data does not distinguishbetween the various treatmentregimes (surgery, palliative care,chemotherapy). Further research isrequired to understand the reasonsfor these delays and whether thereare specific bottlenecks in any of thevarious treatment routes, either at anational level or within specificgeographical areas.


Cum

ulat

ive

perc

enta

ge

Diagnosed bowelcancer patients

100

90

80

70

60

50

40

30

20

10

0

32

1-2

mon

ths

2-3

mon

ths

3-4

mon

ths

4-5

mon

ths

5-6

mon

ths

59

86

48

96 98 99 100

38

1 w

eek

2 w

eeks

3 w

eeks

4 w

eeks

Exhibit 27Bowel cancer waiting times from definitive diagnosis to first definitive treatment across Scotland (October – December 2003)

• 26% of patients waited morethan a month for diagnosis.

174. The reasons for the diagnosticdelays for patients waiting longerthan two weeks (177 patients) andmore than a month (130 patients) arecomplex, and include:

• Capacity issues – the inability ofsome endoscopy and radiologyservices to cope with demand fordiagnostic tests because of staffand equipment limitations.

• Organisational issues – where thesequential booking of diagnostictests creates cumulative delays inthe process as a series of smalldelays between tests accumulatesinto an unacceptably long total wait.

• Failed or unclear tests – thisnecessitates repeat tests whichadd delays into the process.

175. There is no specificperformance target in place for thetime taken from initial contact with ahospital clinician to definitivediagnosis. However, using the SEHD

182. This section of the reportconsiders:

• How improvements in themanagement of suspected bowelcancer patients might beachieved at primary care.

• How best use can be made ofexisting diagnostic resources toenable patients to receive speedydiagnoses.

• What actions need to take placeto ensure that the right staff, withthe right skills, are in place todeliver high quality services.

• Implications for the futuremanagement and monitoring ofbowel cancer services.

The challenge ahead

183. Much good work is taking placeacross NHSScotland to improve thequality of care which bowel cancerpatients receive by:

• strengthening the partnershipbetween GPs and specialistservices to improve theidentification and referral ofsuspected bowel cancer patients

• implementing risk-baseddiagnostic models to speed upthe diagnostic process and securemore efficient use of resources

• capitalising on the opportunitiesthat new technology brings tostreamline and simplify thepatient pathway

• developing the nurse endoscopyrole to ensure that existingendoscopic resources are used tomaximum capacity.

184. But, big challenges lie ahead.Meeting the 2005 waiting timestarget for the diagnosis andtreatment of urgent bowel cancerpatients and implementing nationalbowel screening in such a way that itdoes not disadvantage symptomaticpatients will require a concerted andcoordinated agenda of change to be

delivered across all fronts; fromprimary care through to specialisthospital services and cancer centres.

Improving management at

primary care

185. As we have shown, promptlyidentifying and referring patientssuspected to be suffering frombowel cancer is not a straightforwardprocess. Although national evidence-based referral guidelines forsuspected cancer are in place forGPs it is clear that this is not enoughin itself to secure consistent highquality referral.

186. Local referral protocols, which arenow in place in most parts of Scotland,can help, but securing effectiveimplementation and compliance is achallenge and depends critically upon apartnership approach being developedbetween hospital-based specialists and local GPs.

187. Once GPs know which patientsto refer and to whom, and theyprovide accurate information on thepatients’ symptoms and history to

Part 6. The agenda for the future45

46

appointment or colonoscopy and yet apatient with the same symptomsreferred to his/her colleague in thesame building might experience a waitof 6-9 months for the same test,simply because of the different size ofthe two individual waiting lists.Increased adoption of joint waiting listsfor diagnostic tests will help to addressthis and should lead to more equitableaccess to services and more rationaluse of resources.

Coordinating and pre-booking

diagnostic tests

189. At some sites diagnostic tests arenot well coordinated between thedifferent parts of the service. Whereindividual diagnostic tests are bookedseparately one after another only oncethe results of the previous test areknown, cumulative delays aregenerated. These can be avoided bythe pre-booking of all of the tests thatare needed at the same time. Thisapproach, known as ‘partial’ or ‘fullbooking’ not only reduces delays but itcan also avoid unnecessary hospitalvisits. Pre-booking, and the coordinationof linked clinics (surgical, medical,radiological) are both beginning to beadopted within Scotland.

190. Much work still needs to be doneto improve the basic management ofthe patient journey, by:

• better coordinating the booking of tests

• redesigning patient pathways,removing unnecessary steps andprocesses

• capitalising on the opportunitiesthat new technology brings toreduce the reliance on paper-based systems which carry withthem inherent delays.

191. Staff from the Cancer ServiceImprovement Programme (CSIP)within the Centre for Change andInnovation (CCI) have been workingwith bowel cancer services staff toenable changes of this kind to beachieved and have been successfulin redesigning services at severalsites across Scotland (Exhibit 29).

Endoscopy capacity

192. Staff and diagnostic equipmentin endoscopy are clearly a constraintwithin bowel cancer services, as isaccess to CT and MRI scans for

hospital specialists, those specialistscan determine the urgency withwhich the patient should be seenand ensure that they are given themost appropriate diagnostic tests.This effective partnership can lead toa ‘virtuous circle’ of change whichmakes best use of resources,reduces waits and directs care tothose in greatest need, and supportscontinuous improvement (Exhibit 28).

Making efficient use of resources

Shared waiting lists

188. Significant improvements inefficiency can be created bystreamlining referral processes andimproving the coordination of waitinglist management. Traditional patternsof waiting list management fordiagnosis, where medical staff holdtheir own ‘individual’ lists and where‘named’ referrals skew referralpatterns, create sub-optimal use ofresources, and lead to significantvariability of waits within bowel cancerservices. For example, where ‘named’referrals are the norm, at the samehospital a patient referred to aparticular ‘named’ clinician may waitonly 2-4 weeks for a routine outpatient

Source: Audit Scotland 2005

Improvedidentification

and referral of suspectedbowel cancer patients

More efficient use of resourceseg, service redesign, improving

skill mix and thepre-booking ofdiagnostic tests

Risk-based diagnosisusing consistent and reliable

referral information

Quicker accessto high quality

care

Patient-centredservice

improvement

GPs and specialisthospital services

working inpartnership

Specialist services andNHS boards working

with SEHD to target futureinvestments and improve

value for money fromcurrent resources

Exhibit 28The ‘virtuous circle’ of partnership working and intelligent targeting of existing and new resources

47

Exhibit 29A redesigned patient pathway

Maximum 62 days from urgent GP referral to 1st definitive treatment

Part 6. The agenda for the future

Source: CSIP “Making it Happen” Top 20 Actions for Change “Pursuing Perfection”, SEHD, Edinburgh, 2005

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48

193. The reasons for this mismatchbetween capacity, activity anddemand are complex, and include:

• staff holiday, sickness absence

• inflexible skill-mixing

• poor matching of supply (thevarious diagnostic tests) toshifting patterns of referral, whichleads to backlogs being created

• shortages of qualified staff.

We also found wide variation in theextent to which endoscopy resourcesare fully utilised (Exhibit 31).

194. Improving the efficiency withwhich these resources are used willform a key strand of preparing for theimplementation of national bowelcancer screening. If all sites acrossScotland were able to reduce their didnot attend (DNA) rates from thenational average to the lower quartilefigure, over 1,700 extra lowerendoscopies could take place annually.

Getting the right staff, with the

right skills, in the right place

195. We found strong evidence thata more significant restraint onendoscopy activity than equipment orrooms is the availability of qualifiedstaff. This echoes earlier research.

80

Few endoscopy suites are workingto full capacity, ie, operating morningand afternoon sessions five days aweek, the limiting factor beingstaffing constraints (Exhibit 32).

196. The unused capacity created bystaffing constraints is equivalent to30,000 additional lower gastrointestinalendoscopic procedures annually.

197. Traditionally, endoscopy hasbeen carried out by hospital doctors.There is increasing interest and agrowing demand for the appointmentof nurse endoscopists in Scotland.These are specially qualified nurseswho are competent to undertakeflexible sigmoidoscopies,colonoscopies or other endoscopicinvestigations. The nurse endoscopistrole has developed rapidly over thelast three years (Exhibit 33 overleaf).

staging purposes. It seems likely thatsome additional investment inresources may be required to improvewaiting times performance andsupport the implementation of nationalbowel cancer screening. There isgenerally a poor understanding of theuse to which existing endoscopyresources are put and the relativeefficiency of these services acrossNHSScotland. We found that:

• at many sites in Scotland theendoscopy resources available aregreater than demand

• at only one site that was able toprovide us with demand andcapacity data, was demandgreater than resources available(Exhibit 30).

80 Macfarlane B, Leicester R, Romaya C, et al. Colonoscopy services in the United Kingdom. Endoscopy 1999; 31: 409-11.


Min

utes

Hospitals

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Capacity(total plannedminutes)

Activity(actual proceduresminutes)

Demand(total referralsminutes)

7,000

6,000

5,000

4,000

3,000

2,000

1,000

0

Exhibit 30Endoscopy demand, capacity and activity across Scotland

At most sites there is a poor match between demand and capacity.

49Part 6. The agenda for the future


Hospitals

Number of sessionspotentially available

Number of sessions used

40

35

30

25

20

15

10

5

01 2 3 4 5 6 7 8 9 10 11 12 13 14 15

En

do

sco

py

sess

ion

s

Exhibit 32Unused endoscopy sessions

Available endoscopy sessions are not being fully utilised across Scotland

Exhibit 31Unused endoscopy capacity across Scotland


1 2 3 4 5 6 7 8 9 10 11 12 13 14

100

90

80

70

60

50

40

30

20

10

0

Unu

sed

capa

city

(%)

CBP(Cancelled by patient)

CBH(Cancelled by hospital)

DNA(Did not attend)

Hospitals

50


Nur

ses

in p

ost

Year

25

20

15

10

5

01999 2000 2001 2002 2003 2004

Exhibit 33Numbers of lower GI nurse endoscopists in Scotland 1999-2004

currently available is the nurseendoscopist course at GlasgowCaledonian University. This isinadequate in scale to meet currentneeds, with many staff travelling toEngland to undertake specialisttraining of this kind.

• Accreditation and quality assurancefor endoscopy services in Scotland.

201. These are both pressing issueswhich need to be resolved beforethe national roll-out of bowel cancerscreening.

Improving management

information

202. A theme throughout the reporthas been the need to improve thelevel and quality of routinemanagement information availableabout the performance of bowelcancer services.

203. This becomes particularly criticalat a time when the services facesthe twin challenges of the 2005waiting times target and the majorservice change of introducingnational bowel cancer screening.

204. Although the quality of waitingtimes data is improving, it is stillinadequately sensitive to enable localbowel cancer services to identify thespecific changes and improvementsthat they need to make to theirservices if they are to successfullymeet the 2005 target. There are alsochallenges associated with theintegration of national screening andlocal service data. This integratedinformation will be needed to informservice management decisions toensure that the introduction ofnational screening does notcompromise symptomatic services.

198. There is good evidence thatflexible sigmoidoscopy anddiagnostic colonoscopy can becarried out safely by appropriatelytrained nurses and GPs. Levels ofsatisfaction amongst patients usingnurse-led endoscopy clinics areconsistently high.

81,82,83

199. The further development of thenurse endoscopy role, GP endoscopyand/or other non-medical staff suitablytrained and competent in this areawould make a significant difference inboth increasing the capacity to supportbowel cancer screening and reducing‘lost’ capacity.

200. Two critical issues forendoscopy services in Scotland are:

• Determining the approach fortraining of endoscopists (of anydiscipline) within Scotland. Atpresent, the only specialist training

81 Arumugam PJ, Rao GN, West J, et al, the impact of open access flexible sigmoidoscopy: a comparison of two services. J Royal Coll Surg Edinb 2000; 45: 366-882 Basnyat PS, Gomez KF, West J et al, Nurse-led direct access endoscopy clinics: the future? Surg Edosc Ultrason Interv Tech 2002; 16:166-983 Basnyat PS, West J, Davies PS et al, The nurse practitioner endoscopist. Ann R Coll Surg Engl 2000; 82: 331-2.

Part 6. The agenda for the future 51

205. Meeting the waiting timestargets and the implementation ofnational screening will both havesignificant service implicationsbeyond the confines of bowel cancerservices as:

• A significant proportion of patientswho screen positive will besuffering from other chronic GIconditions, such as inflammatorybowel disease (IBD) or Crohn’sdisease, and will require supportfrom GI services.

• The low diagnostic yield fromlower GI endoscopic tests meansthat improving bowel cancerwaiting times performance willgenerate significant additionalservice activity for generalgastroenterology services.

206. The impact of national bowelcancer screening and the 2005cancer waiting times target ongeneral gastroenterology services willtherefore need to be carefullymonitored.

Recommendations


• monitor the impact of theintroduction of national bowelscreening on generalgastroenterology services

• commission regular researchon patients’ experiences ofbowel cancer services toassess the impact of currentservice redesign initiatives.

52

Glossary

Term Description

Adenoma (or adenomatouspolyp)

A benign epithelial tumour in which the cells form recognisable glandularstructures or in which the cells are clearly derived from glandular epithelium.

Adjuvant therapy Therapy given to assist the action of another treatment such as surgery eg,adjuvant chemotherapy or radiotherapy.

Anaemia Too few red blood cells in the bloodstream, resulting in insufficient delivery ofoxygen to tissues and organs.

Anastomosis An artificial connection, created by surgery, between two tubular organs or parts,especially between two normally separate parts of the intestine. For example, ajunction created by a surgeon between two pieces of bowel which have been cutto remove the intervening section.

Anastomotic dehiscence Splitting open ie, separation of the layers of an anastomosis.

Anterior resection of rectum A technique used when cancer of the rectum is 5-12cm from the anus. Theoperation is usually performed through a vertical cut from above the bone of thepelvis. In most instances the ends are joined together, so that bowel function isnormal. In cases where it is not possible to join the ends together, the end of thebowel will then be brought through the abdominal wall and opened as a colostomy.

Antibiotic prophylaxis The administration of antibiotics to reduce the risk of infection – particularly used inconjunction with surgery where the risk of post-operative infection is high.

Biopsy The removal of a small piece of tissue from an organ or part of the body forhistological analysis, microscopic study, or pathological evaluation. It is an importantmeans of diagnosing cancer from an examination of a fragment of the tumour.

Caecum Also spelt cecum, it is the first portion of the large bowel, situated in the lowerright quadrant of the abdomen. The caecum receives faecal material from thesmall bowel (ileum) which opens into it. The appendix is attached to the caecum.

Chemotherapy The treatment of disease by means of chemicals that have a toxic effect on cellsused to selectively destroy cancerous tissue. It is seen as an aid to potentiallycurative surgery for colorectal cancer and also provides palliation or relief fromcertain symptoms.

Clinical oncologist A doctor who specialises in the use of radiotherapy but who may also usechemotherapy (see also medical oncologist).

Colectomy Surgery to remove part or all of the colon. In a partial colectomy, the surgeonremoves only the cancerous part of the colon and a small amount of surroundinghealthy tissue (called a margin).

Colitis Inflammation of the colon.

Colonoscopy Examination of the entire colon and rectum by a long, flexible tube, with a tinycamera on the end, introduced through the anus and guided visual control. It is themost reliable test for colorectal cancer detecting approximately 95% of tumours.

Colostomy A cut into the bowel to create an artificial opening or "stoma" to the exterior of theabdomen. This opening serves as a substitute anus through which the intestinescan eliminate waste products until the bowel can heal or other corrective surgerycan be done. The bowel movements fall into a collection pouch.

53Glossary

Term Description

Crohn’s disease An inflammatory disease of the gastrointestinal tract that seems to have bothgenetic and environmental causes, not well understood. Common symptomsinclude recurrent abdominal pains, fever, nausea, vomiting, weight loss anddiarrhoea which is occasionally bloody. Complications include gastrointestinalbleeding, fistulas and anal fissures.

CT colonography Used to examine the colon and rectum, and detect abnormalities such as polypsand cancer. It is less invasive than a conventional colonoscopy. It involves using aCT scanner to produce two- and three -dimensional images of the entire colon andrectum. CT colonography is performed on an empty bowel. Sedation is not usuallyrequired. The colon is distended by insufflation with air or carbon dioxide, via asmall rectal tube. Antispasmodic agents and/or contrast agents may beadministered intravenously before the scan. The CT scan is done with the patientholding his or her breath for approximately 20 seconds in both the supine andprone positions. The images are then manipulated and interpreted by a radiologist.

CT (Computed tomography)scan

A special radiographic technique that uses a computer to assimilate multiple X-rayimages into a two dimensional cross-sectional image. This can reveal many softtissue structures not shown by conventional radiography.

Debulking To surgically remove as much of the tumour as possible.

Diagnostic pathway The various tests that a patient may experience as part of the process ofconfirming their illness.

Digital Rectal Examination(DRE)

A digital (finger) rectal examination checks for abnormalities of organs or otherstructures in the pelvic and lower abdominal area. During a digital rectal examination, a health professional inserts a lubricated, gloved finger of one hand into the rectumand may use the other hand to press on the lower abdomen or pelvic area.

Distal colon The distal colon comprises the rectum, the sigmoid and the descending colon.

Double contrast barium enema(DCBE)

A radiographic diagnostic procedure that involves the introduction of bariumcontaining contrast material into the lower gastrointestinal tract via the anusfollowed by insufflation. X-rays taken after installation of the barium will outline thecourse and anatomy of the lower GI tract, allowing any tumour to be visualised indetail. DCBE detects about 85-95% of colorectal cancer.

Downstaging The use of treatment e.g. chemotherapy or radiotherapy to reduce the size of atumour, prior to another curative treatment, such as surgery.

Dukes’ stage Classification of the pathological stage of colorectal cancer (figures for five yearsurvival at diagnosis of each stage are given in brackets): Stage A – localised withinbowel wall (85%); Stage B – penetrates bowel wall (65%); Stage C – spread to lymphnodes (40%); “Stage D” – distant metastases (<5%).

DVT prophylaxis Measures taken to reduce the prospect of the patient suffering from deep veinthrombosis after an operation.

Endoscope An expensive and usually highly flexible fibreoptic viewing instrument withcapabilities of diagnostic (biopsy) or even therapeutic functions.

Endoscopy The visual inspection of any cavity of the body by means of an endoscope.

54

Term Description

Familial Adenomatous Polyposis Coli (FAP)

A hereditary predisposition to the development of several hundreds or thousandsof tubular adenomas throughout the large intestine, usually detectable bysigmoidoscopy before the age of 35. Malignant change can occur in a smallamount of the polyps within 12 years of development. FAP accounts for around1% of all colorectal cancer in the UK.

FOBT (faecal occult blood test)screening

Screening for colorectal cancer using a chemical test that measures the presenceof blood.

Gastroenterology The diagnosis and treatment of diseases and disorders affecting the stomach,intestines and associated organs.

Gastroenterologist A physician with additional training in digestive diseases.

Hereditary non-polyposis colorectal cancer (HNPCC)

HNPCC is associated with a gene mutation. In those affected, the risk ofdeveloping colorectal cancer rises from the age of 20 to 80% by the age of 80 inmen. Other cancers occur in carriers of the gene mutation – the risk to femalesinclude endometrial and ovarian cancer.

Histopathological diagnosis Diagnosis made by a pathologist studying cells or tissue at a microscopic level.

Inflammatory Bowel Disease Inflammatory Bowel Disease (IBD) is an umbrella term referring to two chronicdiseases that cause inflammation of the intestines: ulcerative colitis and Crohn'sdisease. Although they are different diseases, they do have features in common,including the symptoms, but there are important distinctions also.

Insufflation A medical treatment undertaken by blowing a powder, gas, or vapour into a bodilycavity.

Lesion An abnormal change involving any tissue or organ due to disease or injury. Thereare numerous types of lesions with different naming classifications.

Lymph nodes Small bean-shaped organs located along the lymphatic system. Nodes filterbacteria or cancer cells that might travel through the lymphatic system.

Mesorectum A fatty tissue directly adjacent to the rectum that contains blood vessels andlymph nodes. For patients with rectal cancer in the middle or lower two-thirds ofthe rectum, total mesorectal excision (TME) is now routine clinical practice.

Metastasis Spread of cancer from one part of the body to another.

Metastatic cancer Cancer that has spread from its original site to other parts of the body; mostcommonly bone, lung, liver, brain, and lymph nodes.

Linear accelerators (LinAcs) Modern radiotherapy machines, which deliver high-energy X-rays and electrons tokill tumour cells.

Medical oncologist A doctor who specialises in the use of chemotherapy.

MRI (magnetic resonanceimaging) scan

A special imaging technique used to image internal structures of the body, particularlythe soft tissues. Images are very clear and often superior to a normal X-ray image.Scans may be used for detecting some cancers or for following their progress.

Glossary 55

Term Description

Palliative Treatment provided to alleviate symptoms or reduce the severity ofsymptoms without curing the underlying disease.

Palpable mass A tumour that can be felt by hand during a physical examination.

Patient Journey A technical term used within the NHS to describe the various stages that anindividual patient may experience as they progress from referral anddiagnosis through to treatment. ‘Mapping’ the patient journey, i.e. recordingthe experience that patients go through, is often used to identify how caremight be better co-ordinated and treatment speeded up.

Pendunculated polyps Polyps on "stalks" are described as pendunculated and are the easiest toremove with clipping. They are also less likely to be cancerous comparedto polyps which are sessile.

PET (positron emission tomography) scan Positron emission tomography, also called PET imaging or a PET scan, isa diagnostic examination that involves the acquisition of physiologicimages based on the detection of positrons. Positrons are tiny particlesemitted from a radioactive substance administered to the patient. Thesubsequent views of the human body developed by this technique areused to evaluate a variety of diseases.

Polyp Small outgrowth of tissue arising from the mucous membrane of thecolon.

Polypectomy Surgical removal of a polyp.

Prophylaxis Treatment that helps to prevent a disease before it occurs e.g. antibioticprophylaxis to prevent infection.

Radiotherapy The treatment of disease by ionising radiation. Radiotherapy can be usedto treat cancer, usually before or after surgery, and in some cases as analternative to surgery or to relieve symptoms of advanced disease.

Resection margin When a tumour is removed, a pathologist checks to make sure the edgesof the tissue are free of cancer cells. This indicates whether all of thecancer has been removed. The pathologist also measures how far in fromthe edge cancer cells do occur. The term "margins" or "resection margins"is used to refer to the distance between the tumour and the edge of thetissue. The margins are measured on all six sides: front and back, top andbottom, left and right. Seeing how close cancer cells are to the edge of theremoved tissue helps doctors make the right treatment decisions.

Sessile polyps Polyps which are ulcerated or flat, or ulcerate into the bowel. An opensurgical procedure is often needed to remove these types.

Sigmoidoscopy A narrower, shorter tube than that used in colonoscopy, which can beflexible or rigid, with a camera on the end that allows visual inspection ofapproximately 75% of lesions in the rectum and sigmoid colon (the S-shaped part of the colon).

Staging Process of describing whether cancer has spread from its original site toanother part of the body. Staging involves clinical, surgical and pathologyassessments. Restaging is a repeat of this process to investigaterecurrent disease to establish whether the cancer has progressed sincethe last staging was carried out (See under Duke’s Stage for the differentclassifications of bowel cancer).

56

Term Description

Stoma A surgically constructed opening in the abdominal wall that permits thepassage of waste after a colostomy or ileostomy.

Total mesorectal excision (TME) A technique for surgical removal or rectal cancer which involvesmeticulous dissection and excision of tissue surrounding the rectum.

Triage A method of ranking sick or injured people according to the severity oftheir sickness or injury in order to ensure that medical and nursing stafffacilities are used most efficiently.

Ulcerative colitis A disease that causes inflammation and sores, called ulcers, in the liningof the large intestine. The most common symptoms are abdominal painand bloody diarrhoea. The cause of the disease is still unclear.

Ultrasound scan A type of imaging technique, which uses high-frequency sound waves.

57

Appendix 1

Area Representative

Cancer Networks Evelyn Thompson, West of Scotland Cancer Network (WOSCAN) Co-ordinator

Gastroneterology Dr Perminder Phull, Head of Gastroneterology Service, Grampian UniversityHospitals TrustDr John Wilson, Consultant Gastroneterologist, NHS Fife (Chair of SCAN Colorectal Group)

General Practice Dr Michael Boyle, GP, Linlithgow Group Medical Practice

NHS Quality Improvement Scotland (QIS)

Ms Frances Smith, NHS QIS

Service Management Elizabeth Preston, Assistant General Manager, Western General Hospital, NHSLothian

Surgeons Mr Ian Finlay, Consultant Surgeon, Glasgow Royal Infirmary, NHS Glasgow (past Chair of WoSCAN Colorectal Cancer Managed Clinical Network)

Palliative care Dr Pamela Levack, Macmillans Consultant in Palliative Medicine, Ninewells Hospitaland Roxburghe House, Dundee

Pathologists Professor Frank Carey, Consultant Pathologist, Ninewells Hospital, Dundee, NHSTayside

Primary Care Helen Spratt, Director of Nursing, Highland Primary Care Trust, NHS Highlands

Public Health Dr Harry Burns, Director of Public Health, Greater Glasgow Health Board, NHSGlasgow

Radiologists Dr Fat Wui Poon, Consultant Gastrointestinal Radiologist, Glasgow Royal Infirmary,NHS Glasgow

Specialist nurses Ms Linnet Mcgeever, Colorectal Nurse Specialist, NHS Forth Valley

Voluntary Sector Dr J Gordon Paterson OBE, Chair of Scottish Cancer Coalition

Scottish Executive HealthDepartment (Observer)

Liz Porterfield, Cancer Services Co-ordinator, Scottish Executive Health Department

Expert advisory group

58Pe

rcen

tage

9f-1 9f-2 9f-3

100

90

80

70

60

50

11 11

Appendix 2The black line illustrates the target figure for performance set by the standard. The thick turquoise line shows themedian performance across NHSScotland. The boxes show the lower and upper quartile performance limits. Thelines extending from the boxes show the minimum and maximum performances. Circles and asterixes are outliers.

Bowel cancer clinical compliance with bowel preparation standards 9f (1-3)

Pre-operative preparations and investigations required for bowel cancer patients: 1. A minimum of 80% of patients should have bowel preparation; 2. A minimum of 70% of patients should have DVT prophylaxis; 3. All patients are to have antibiotic prophylaxis.


59


Bowel cancer clinical compliance with standard 10 (1-2)

Clarity of tumour margin after surgery: 1. All distal resection margins (for all tumours) are clear; 2. A minimum of 70% of circumferential margins (for rectal tumours) are clear.


Perc

enta

ge

10-1 10-2

100

90

80

70

60

50

14*

60Pe

rcen

tage

11c-1 11c-2 11c-3

20

15

10

5

0


Bowel Cancer Clinical Compliance with Standard 11c(1-3)

Anastomic dehiscence after surgery: 1. Is not more than 5% after colonic anastomosis; 2. Is not more than10% after rectal anastomosis; and 3. is not more than 20% after anterior resection with TME for rectal cancer.

Source: Audit Scotland fieldwork

Audit Scotland110 George StreetEdinburgh EH2 4LH

Telephone0131 477 1234Fax0131 477 4567

www.audit-scotland.gov.uk ISBN 1 904651 70 4 AGS/2005/2

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