The inaugural national report of the results for the primary care questionnaire responses

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1 The inaugural national report of the results for the primary care questionnaire responses Part of the UK inflammatory bowel disease audit 3rd round April 2012 Prepared by the UK IBD Audit Steering Group on behalf of: 1

2 Table of contents Report authors and acknowledgements... 3 Acknowledgements... 3 Executive summary... 4 Background... 4 Overall summary... 4 Key findings... 5 Key recommendations... 5 Background information and introduction... 6 The burden of inflammatory bowel disease... 6 UK IBD audit background... 6 Presentation of results... 6 UK IBD audit aims... 7 Availability of audit results in the public domain... 7 Detailed analysis of questionnaire responses... 8 Section 1: Patient specific responses... 8 Section 2: Organisation & structures of primary care for patients with known or suspected IBD Full questionnaire results table Appendices Appendix 1: Methodology and sample Appendix 2: Glossary / Abbreviations Appendix 3: Members of the UK IBD audit steering group Appendix 4: Clinical audit participants Appendix 5: References

3 Report authors and acknowledgements Report prepared on behalf of the UK IBD audit steering group by: Dr Ian Arnott Consultant gastroenterologist, Western General Hospital, Edinburgh & clinical director for the UK IBD Audit Mr Calvin Down UK IBD audit project manager, Clinical Effectiveness and Evaluation Unit, Royal College of Physicians Dr John O Malley Secretary of the Primary Care Society for Gastroenterology and medical director, Mastercall Healthcare Miss Aimee Protheroe UK IBD audit project coordinator, Clinical Effectiveness and Evaluation Unit, Royal College of Physicians Mr Michael Roughton Medical statistician, Clinical Effectiveness and Evaluation Unit, Royal College of Physicians Acknowledgements The UK IBD audit steering group would like to thank all of the primary care staff that contributed towards organising the collection, retrieval and inputting of data for this element of the UK IBD audit. Acknowledgement is also due to the many secondary care staff that distributed the primary care questionnaire as part of the 3rd Round of the UK IBD audit and would like to recognise the fact that this has involved many individuals in both settings, spending time over and above an already heavy workload with no financial recompense The web based data collection tool was developed by Netsolving Ltd. Thanks are also due to: The Association of Coloproctology of Great Britain and Ireland The British Dietetic Society The British Society of Gastroenterology The British Society of Paediatric Gastroenterology, Hepatology and Nutrition Crohn s and Colitis UK The Primary Care Society for Gastroenterology The Royal College of Nursing IBD Nurse Network Royal College of Physicians The Royal Pharmaceutical Society of Great Britain The UK IBD Audit 3rd Round is commissioned by: The Healthcare Quality Improvement Partnership Healthcare Improvement Scotland 3

4 Executive summary Background The inflammatory bowel diseases (IBD), ulcerative colitis (UC) and Crohn s disease (CD) are common causes of gastrointestinal morbidity. The total cost of IBD to the NHS has been estimated at 720 million, based on an average cost of 3,000 per patient per year with up to half of total costs attributed to relapsing patients 1. Up to 25% of cases will present in childhood years with a marked rise in the incidence of paediatric IBD noted in the UK over the past few decades. The UK IBD audit 1st round was the first UK-wide audit performed within gastroenterology care for adults. It demonstrated wide variation in the resources and quality of care for adult IBD patients across the UK with particular deficits in some fundamental aspects of IBD care. Following the first round members of the UK IBD audit steering group met with representatives of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) and agreed to include paediatric gastroenterology in the 2nd audit round so the UK IBD audit could become a truly comprehensive audit encompassing IBD patients of all ages. During the 3rd round of the audit, the inclusion of primary care and inpatient experience questionnaires provided the opportunity to give a more extensive picture of the provision of IBD care. The primary care questionnaire was generated from the UK IBD audit web tool by hospital staff after they had entered details of an admission of a patient with IBD as part of the clinical audit phase of the 3rd round. The questionnaire was then distributed to the named GP for that patient by the hospital staff. These questionnaires were either completed online onto the audit web tool by the GP or returned in a freepost envelope to the UK IBD audit project team for input centrally. Each questionnaire was generated complete with a unique cross-reference code that enabled retrospective anonymised linkage of the primary care questionnaire response, with the details of the patient s admission captured through the clinical audit. At no point could the central project team identify either the GP or the patient. The questionnaires could also be linked in a similar fashion to the data submitted by a particular hospital to the 3rd round organisational audit phase. Further detail on the cross-referencing process is detailed in appendix completed questionnaires meeting the inclusion criteria were returned by GPs out of a maximum of 6640 related admissions that were audited as part of the adult and paediatric national clinical audit element of the UK IBD audit 3rd round. Overall summary In a typical practice, a GP will rarely come across acute exacerbations (flare ups) of IBD but it is important that they can recognise them when they do occur. They should know which treatments to use but where they feel they need specialist advice, they must know who to contact and have direct and quick lines of communication through to these specialists 2. The results contained within this report show that almost all GP s indicated having some level of confidence in recognising the key symptoms of IBD in their patients with only 9.1% indicating that they were not confident in dealing with flare-ups. There does however, seem to be a wide range in the treatments given and this may depend upon whether GPs try to contact specialists for advice and indeed if they do, who it is that they choose to contact. Many GPs seem unable to get their patients seen in secondary care within 7 days in the event of a relapse despite the insistence of many hospitals that such rapid access exists. Furthermore, GPs are not clear about who they should contact or indeed who is available to contact. Some try speaking to specialist registrars, others consultants and only a small number contacted IBD specialist nurses. Whilst a fifth of GPs indicated that an IBD clinical nurse specialist would be their first point of contact when they see a patient who has relapsed, the results show that less than 10% actually did so at hospitals with 4

5 known IBD nurse specialist provision. There is clearly much work to be done by secondary care to promote the role of the IBD nurse specialist, in particular to primary care to make GPs aware of the advice and support that they can offer and to let them know the quickest means of making contact with them. It is gratifying to see that 76% of patients are being seen in secondary care, having had an outpatient appointment in the 12 months prior to their indicated admission but that leaves a sizeable minority who are either being seen in primary care alone or by no clinical team whatsoever meaning that their healthcare needs are not being met. If a patient is seen exclusively by primary care they are entitled to feel that the professional managing of their care is basing their treatment on a well based knowledge of their disease. Even when GPs express confidence in recognising the symptoms of IBD and providing appropriate care when treating a flare up of the disease they overwhelming still identify a requirement for educational support whether through patient specific treatment plans, formal care pathways or educational visits from secondary care specialists. Key findings 1. Less than 10% of GPs took up the opportunity to contact an available IBD nurse at their local hospital. Many GPs may not know of the existence of IBD nurses or where they do, they might not be aware of the type of support that the nurse can provide or how to contact with them directly 2. In third of cases where GPs had a consultation with the patient in the month prior to their admission they did not initiate any treatment nor did they make contact with any secondary care specialists 3. There is clearly a difference of opinion in many cases between the speed with which hospitals feel that they can see a relapsing patient who has been referred to them and whether GPs are as confident that they are always able to refer patients as quickly 4. Around a quarter of patients had not had an outpatient appointment in the 12 months prior to their indicated admission to hospital 5. Half of GPs indicated that they either did not know who to contact when requiring help and advice from secondary care or that even when they did know who to contact the lines of communication were slow 6. Paediatric patients were significantly less likely than adult patients to be seen by a GP prior to admission and of the paediatric patients who were seen they were much less likely to have treatment started 7. There is a hunger for further education in relation to the management of IBD from GPs Key recommendations 1. Secondary care and the Royal College of Nursing Crohn s and colitis specialist interest group should promote and raise awareness of the role of IBD specialist nurses and the support that they can offer to primary care in making treatment choices and preventing admission to hospital 2. Hospitals should always provide GPs with a copy of a patient s most up to date care management plan. This plan should clearly indicate named individuals who can be contacted for advice in the event of a relapse, including any details of an IBD nurse specialist where one is in post 3. The Primary Care Society for Gastroenterology should coordinate educational events with primary and secondary care input to promote the latest knowledge in relation to the treatment of IBD 4. The Primary Care Society for Gastroenterology should encourage general practice research into the number of patients who have been diagnosed with IBD but who are not currently being seen either in primary or secondary care 5. GPs require educational support in relation to understanding the colon cancer surveillance requirements of patients with IBD 5

6 Background information and introduction The burden of inflammatory bowel disease Although ignored by the National Service Framework programme, UC and CD are common causes of morbidity in the western world. The incidence of IBD has risen dramatically in recent decades with a combined incidence now of over 400/100,000. It has been estimated that up to 0.5% of European and North American populations are affected. IBD commonly presents in the second and third decade but much of the recent increase has been observed in childhood, notably with CD in children increasing three fold in 30 years. IBD is not curable, UC and CD are lifelong conditions following an unpredictable relapsing and remitting course. 25% of UC patients require colectomy and approximately 80% of CD patients require surgery over their lifetime. The main symptoms are diarrhoea, abdominal pain and an overwhelming sense of fatigue but associated features such as arthritis, anal disease, fistulae, abscess and skin problems can also contribute to a poor quality of life. In addition there are wide ranging affects on growth and pubertal development, psychological health, education and employment, family life and pregnancy and fertility. Effective multidisciplinary care, including primary care can attenuate relapse, prolong remission, treat complications and improve quality of life. UK IBD audit background The UK IBD audit seeks to improve the quality and safety of care for all IBD patients throughout the UK by auditing individual patient care and the provision and organisation of IBD service resources. As with the 1st and 2nd rounds of the audit, the 3rd round reports of organisational audit data (published May 2011) and clinical audit data (published February 2012) have enabled participating sites to compare or benchmark their performance against national statistics. Following the data collection, analysis and reporting phases of all audit rounds, intervention strategies are used to improve the provision and quality of IBD care. Such strategies include the widespread dissemination of results, the availability of the national reports through the Royal College of Physicians (RCP) website and the hosting of regional meetings to discuss findings and share learning. Data from all rounds is presented at key professional and patient meetings, previously including those of the British Society of Gastroenterology (BSG), Association of Coloproctology of Great Britain and Ireland (ACGBI), British Dietetic Association (BDA), Royal College of Nursing-IBD Nurse Forum and Crohn s and Colitis UK. A number of participating sites collaborated with members of the UK IBD audit steering group to develop a model action plan for IBD services that addressed the key messages from the 1st round report. The model action plan is accessible via the RCP internet and contains freely adaptable reference documents such as care pathways, model business cases for IBD clinical nurse specialist posts and patient information leaflets. Presentation of results All data presented in the tables of this report are national level findings; there are no findings for particular GP practices, hospitals or regions to ensure the continued protection of respondent anonymity. Data from 1675 GP questionnaire responses were included in the analysis for the preparation of this report. The full responses are indicated in the full questionnaire response table on page 14 but for the purpose of more focused analysis of the data they have been sub-divided on occasion to look at groupings of adult or paediatric patients, CD or UC patients or elective versus nonelective admissions. The GP questionnaire data has in some areas also been compared against relevant UK IBD audit 3rd round national organisational audit data. An explanation is given above each particular table of results indicating what the results in the table represent and all denominators are provided for reference accordingly in each table. Not all GPs responded to every question within the questionnaire. Where no response was provided for a question, the denominator is adjusted accordingly. Throughout all tables within this report alongside the right hand column of data, statistical significance, where present, will be represented with an asterix (*) against the indicated P-value. The full report is supported by the UK IBD audit steering group. 6

7 UK IBD audit aims The specific aims of the UK IBD audit set out at the inception of the project were to: 1. Assess processes and outcomes of care delivery (inpatient and outpatient) in IBD 2. Enable trusts to compare their performance against national standards 3. Identify resource and organisational factors that may account for observed variations in care 4. Facilitate, develop and institute an intervention strategy to improve quality of care. 5. Repeat the audit to prove that change has occurred 6. Establish measures for healthcare services to use to compare quality of IBD services 7. Develop a sustainability programme to maintain quality of care. Further information on the work of the UK IBD audit project can be accessed via the Clinical Effectiveness & Evaluation Unit section of the Royal College of Physicians website. Availability of audit results in the public domain Full and executive summary copies of this report will be available in the public domain via the Royal College of Physicians, London external website: The national report will be made available to the Department of Health in England, Healthcare Improvement Scotland, NHS Wales and the Department of Health, Social Services and Public Safety in Northern Ireland. 7

8 Detailed analysis of questionnaire responses The role of primary care in the management of IBD is an ill understood one. Many GPs feel that their role is limited, believing that the management of IBD is mainly an issue for secondary care. Others feel confident in treating patients during flare ups and even in continuing their maintenance treatment in a primary care setting. The primary care questionnaire used in the compilation of this report was designed to look at three main areas; the role of the GP before an admission for a flare up of IBD, GP confidence levels in recognising the issues involved in the care of patients with IBD and leading on from that, the educational needs of primary care. Throughout all tables within this report, statistical significance, where present, will be represented with an asterix (*) alongside the right hand column of data. Section 1: Patient specific responses The questionnaire responses within section 1 provide us with some interesting results in relation to the interaction between the GP and the patient prior to the admission for an acute exacerbation of IBD. GP consultation prior to the admission 59.5% of GPs reported having had a consultation with the patient in the four weeks prior to their admission for IBD (full data table-page 14), with a median number of 1 consultation prior to the admission. As might be expected, GPs were more likely to have had a consultation with a patient prior to a non-elective admission than in cases where the admission was a planned one for surgery (table below). The fact that 40.5% (668/1651) of patients did not have a consultation with their GP in the month prior to their hospital admission may reflect that good arrangements for rapid advice in the event of a relapse were already established between these patients and secondary care staff. This fact may also indicate, however, that patients are not confident in the abilities of their GP to manage their flare up. This may be an area to explore in future inpatient experience questionnaires. Table: Adult and paediatric patients that had at least one consultation with their GP in the four weeks prior to their hospital admission Type of admission All adult patients with a prior consultation Non-Elective Elective All adult patients 831/1249 (66.5%) 92/267 (34.5%) * UC adult patients 436/620 (70.3%) 42/125 (33.6%) * CD adult patients 395/629 (62.8%) 50/142 (35.2%) * Type of admission All paediatric patients with a prior consultation Non-Elective Elective All paediatric patients 53/112 (47.3%) 7/23 (30.4%) UC paediatric patients 20/38 (52.6%) 3/5 (60.0%) CD paediatric patients 33/74 (44.6%) 4/18 (22.2%) Adult patients were more likely than paediatric patients to have seen their GP in the four weeks prior to admission, particularly when looking at non-elective admissions. Two-thirds of adult non-elective patients had at least one consultation (831/ %) compared to less than half of paediatric nonelective patients (53/ %). For elective cases there was little difference, with 34% of adult and 30% of paediatric patients having a prior consultation. Initiation of treatment by the GP prior to the admission It is of note that where a patient had a consultation with their GP prior to their admission, in a third of both adult and paediatric cases no contact was made between their GP and secondary care and nor were any treatments initiated. This brings into question the effectiveness of the consultation and whether the lack of any intervention may have contributed towards the patient requiring admission. 8

9 Was there a GP consultation prior to admission? All adult patients No Yes No treatment initiated and no contact made with secondary care 386 (67.6%) 296 (32.7%) * All paediatric patients No Yes No treatment initiated and no contact made with secondary care 37 (50.0%) 20 (33.3%) When at least one GP consultation was reported, treatment was initiated in 44% of adult patients, compared to just 25% of paediatric patients. With reference to the table below, where treatment was initiated for adults it was significantly more likely to have been done so in UC patients rather than CD patients. This table includes only those GPs that reported having had at least one consultation with the patient. Adult patients Number of instances where treatment was initiated by the GP (or colleague) in response to the exacerbation of IBD prior to the admission Paediatric patients Number of instances where treatment was initiated by the GP (or colleague) in response to the exacerbation of IBD prior to the admission UC (n=475) CD (n=443) 254 (53.4%) 153 (34.5%) * (n=23) (n=37) 5 (21.7%) 10 (27.0%) The main treatment modalities were initiation or changes to the dosage and treatment method with 5- ASA and the use of steroids. GP contact with secondary care staff prior to admission 59% (954/1632 questionnaire responses) of GPs reported that they had no contact with secondary care in the four weeks prior to the admission (this excludes any contact that might have occurred in order to arrange the admission itself). Where contact was made between primary and secondary care, this was with a hospital consultant in 81% (548/678) of cases, a Specialist Registrar (SpR) in 11% (73/678) of cases and an IBD nurse specialist in 17% (112/678) of cases (contact with more than one member of staff could be indicated). The UK IBD audit 3rd round national organisational audit published in May 2011 showed which IBD services had indicated that they had an IBD nurse specialist in post. The tables below (adult and paediatric) show how many GPs had contact with an IBD nurse prior to the patient s admission (out of the 1492 questionnaires received from GPs where the patient was admitted to a hospital known to have IBD nurse specialist provision). The GP contacted the specialist nurse in 9.3% (99/1064) of these cases with adult patients and 8.6% of cases with paediatric patients. Adult patients Where IBD nurse provision was available All adult patients Contact made with IBD CNS Yes = 99 (9.3%) UC adult patients Contact made with IBD CNS Yes = 56 (10.7%) CD adult patients Contact made with IBD CNS Yes = 43 (8.0%) 9

10 Paediatric patients Where IBD nurse provision was available All paediatric patients Contact made with IBD CNS 10 (8.6%) UC paediatric patients Contact made with IBD CNS 3 (8.3%) CD paediatric patients Contact made with IBD CNS 7 (8.6%) In sites where there is IBD nurse specialist provision the GPs were slightly less likely to contact the hospital consultant than in the overall figures for all sites and slightly more likely to contact the IBD Nurse As the table below demonstrates, in cases where a GP did initiate treatment for a patient prior to their admission, these GPs were 19.5% more likely to have also had contact with secondary care staff prior to that admission 1.2 Did you or a colleague have contact with secondary care staff in the four weeks prior to the admission, other than to arrange the admission itself? 1.3 Were any treatments initiated by you or a GP colleague in response to this exacerbation of IBD prior to the indicated admission? No Yes No 746/1171 (63.7%) 200/452 (44.2%) * Yes 425/1171 (36.3%) 252/452 (55.7%) Hospital outpatient appointments for IBD in the 12 months prior to the admission 76% of patients who had been admitted to hospital were being seen in secondary care having had an outpatient appointment in hospital during the 12 months prior to the indicated admission. Although high at nearly 76%, it does suggest there are a large number, albeit a minority who are either being seen solely in primary care or not being seen by anyone. This raises worrying issues about their quality of care. Section 2: Organisation & structures of primary care for patients with known or suspected IBD Section 2 asked a number of general questions about the management of IBD rather than focusing on the GP s interaction with a particular patient with IBD prior their admission. Where a GP might have returned more than one questionnaire relating to different patients they only had to complete section 2 once. There were a total of 1606 questionnaires received from different GPs with Section 2 completed. GP confidence levels in recognising the key symptoms of IBD and dealing with acute exacerbations of IBD Only 0.3% of GPs indicated that they were not confident in recognising the key symptoms of IBD, with varying degrees of confidence being expressed (slightly confident 8.3%, somewhat confident 67.3% and very confident 24%) Only 9.1% of GPs were not confident in dealing with acute exacerbations of IBD but again with varying degrees of confidence being expressed (slightly confident 31.5%, somewhat confident 53.3% and very confident 6.1%) When taken together the response to the questions how confident are you in recognising the key symptoms of IBD? and how confident are you in dealing with acute exacerbations of IBD? would suggest a high level of confidence both in the recognition and the treatment of flare ups. 10

11 The tables below suggest that there is a link between a GPs confidence both in recognising and dealing with IBD their experience of accessing secondary care and their need for educational support in relation to IBD. Over 30% of GPs who felt they were somewhat or very confident in recognising IBD symptoms reported no problems in accessing secondary care services, compared to just over 20% of GPs who expressed less confidence. Those who had higher confidence levels were also less likely to report they didn t know who to contact. 92% of GPs with lower levels of confidence in recognising IBD felt they needed educational support in the management of IBD, compared to 79% of those with more confidence. 2.6 What are the problems with accessing the appropriate help/access to secondary care? 2.1 How confident are you in recognising the key symptoms of IBD? Not or slightly confident Somewhat or very confident Don t know who to contact 21 (15.2%) 107 (7.5%) * Lines of communication are slow 61 (44.2%) 640 (44.8%) No problems 30 (21.7%) 451 (31.6%) Don t known 11 (8.0%) 59 (4.1%) Other 15 (10.9%) 172 (12.0%) 2.3 Do you feel you need any educational support in the management of IBD? 2.1 How confident are you in recognising the key symptoms of IBD? Not or slightly confident Somewhat or very confident Yes 127 (92.0%) 1162 (79.4%) * No 11 (8.0%) 297 (20.3%) Other 0 (0%) 5 (0.3%) Similar results were seen when looking at how confident GPs were in dealing with IBD exacerbations. Those who were less confident in this area were more likely to report not knowing who to contact and felt they needed educational support. 2.6 What are the problems with accessing the appropriate help/access to secondary care? 2.2 How confident are you in dealing with acute exacerbations of IBD? Not or slightly confident Somewhat or very confident Don t know who to contact 82 (12.9%) 46 (4.9%) * Lines of communication are slow 277 (43.7%) 424 (45.4%) No problems 166 (26. 2%) 315 (33.8%) Don t known 38 (6.0%) 32 (3.4%) Other 71 (11.2%) 116 (12.4%) 2.3 Do you feel you need any educational support in the management of IBD? 2.2 How confident are you in dealing with acute exacerbations of IBD? Not or slightly confident Somewhat or very confident Yes 610 (93.9%) 680 (71.4%) * No 39 (6.0%) 269 (28.3%) Other 1 (0.2%) 3 (0.3%) Furthermore the table outlined below reveals that those GPs reporting greater confidence in their ability to deal with an acute exacerbation of IBD are significantly more likely have initiated treatment prior to admission. 1.3 Were any treatments initiated by you or a GP colleague in response to this exacerbation of IBD prior to the indicated admission 2.2 How confident are you in dealing with acute exacerbations of IBD? Not or slightly confident Somewhat or very confident Yes 159/646 (24.6%) 287/942 (30.5%) * No 487/646 (75.4%) 655/942 (69.5%) 11

12 First point of contact in secondary care by GPs following consultation with a relapsing IBD patient The overall results for section 1 showed that only 6.9% of GPs had contact with an IBD nurse specialist during the 4 weeks prior to the patient s admission. The table below was compiled using the data from the 3rd round organisational audits which showed whether IBD services (both adult and paediatric) indicated that they had any specialist IBD nurse provision. As detailed in the section 1 cross analysis, GPs contacted the IBD specialist nurse in 9.3% of cases with adult patients and in 8.6% of cases with paediatric patients where we know that IBD nurse provision was available at the hospital that the patient was subsequently admitted to. The table below shows that where GPs do have an option of contacting an IBD nurse at their local hospital, they indicated in 25.4% of cases that the IBD nurse would be their first point of contact. The table also shows that even where GPs do not currently have access to one, in 7.6% of cases the IBD nurse was indicated as their preferred first point of contact. These results suggest that much work needs to be done by secondary care services to promote the availability of the specialist nurse contact information to primary care. IBD nurse provision available at hospital? 2.4 When you see a patient with IBD who has relapsed, who would normally be your first point of contact? No Yes Consultant gastroenterologist 217 (53.3%) 424 (36.7%) * Gastroenterology SpR 66 (16.2%) 211 (18.3%) IBD nurse 31 (7.6%) 294 (25.4%) Hospital switchboard 22 (5.4%) 44 (3.8%) Don t know 9 (2.2%) 27 (2.3%) Other 62 (15.2%) 156 (13.5%) Ease of access to secondary care within 7 days for relapsing IBD patients The overall results show that in the 59% of cases (876/1473) GPs indicated that it would not be possible to arrange an outpatient appointment for relapsing IBD patients within 7 days of their referral to hospital. As virtually all GPs refer their patients to a single hospital it was possible to correlate the GP responses against the organisational audit response given by the hospital that they normally refer to. There were 184 different hospitals represented in responses to this question. The results from the 3rd round organisational audit showed that 88% of adult and 91% of paediatric IBD services indicated that they could offer an appointment for relapsing patients within 7 days of referral. The 184 hospitals represented in this survey showed a similar level of response to this, with 158 (86%) indicating they were offered an appointment within 7 days. The table below shows that the perceptions of primary and secondary care services differ greatly in this area. Only 47% of GPs agreed with their referring hospital about whether they could usually get an appointment within 7 days, with 36% agreeing they were able to and 11% agreeing that it was not possible. In the 53% of cases where there was disagreement, the vast majority occurred when the GP felt it was not usually possible to get an appointment within 7 days, but the hospital indicated that they offered this. This suggests that the service that the hospitals believe they are offering; differs from what GPs perceive to be the case. 2.5 When needed, is it usually possible to arrange an outpatient appointment for relapsing IBD patients within 7 days of your referral? Hospital indicated in the organisational audit that it is (Yes) / isn t (No) possible to offer an outpatient appointment for relapsing patient within 7 days of referral No Yes Yes 71 (4.8%) 526 (35.7%) * No 166 (11.3%) 710 (48.2%) 12

13 The table below shows that that many GPs identified the problem with accessing appropriate help or access to secondary care as being that they either did not know who to contact or that they did know but that lines of communication were slow. In almost 80% of cases where these problems were identified it meant that the GP had indicated that they felt it was not possible to arrange an outpatient appointment for a relapsing IBD patient within 7 days of their referral. 2.5 When needed, is it usually possible to arrange an outpatient appointment for relapsing IBD patients within 7 days of your referral? 2.6 What are the problems in accessing the appropriate help/access to secondary care? Know who to contact but Don t know who to contact lines of communication are slow No problems Don t know Other Yes 24 (21.4%) 141 (21.0%) 353 (79.3%) 26 (57.8%) 37 (21.5%) * No 88 (78.6%) 529 (79.0%) 92 (20.7%) 19 (42.2%) 135 (78.5%) Follow up care for IBD patients Even where hospitals indicated that they offer their patients primary care follow up with links to the hospital IBD team the GPs said in almost 50% of cases that they either don t know who to contact or that lines of communication are slow. Hospital reported in the organisational audit that primary care follow up with links to the IBD Team is (Yes) / isn t (No) offered 2.6 What are the problems in accessing the appropriate help/access to secondary care? No Yes Don t know who to contact 98 (8.5%) 30 (7.3%) * Lines of communication are slow 533 (46.2%) 168 (40.6%) No problems 325 (28.1%) 158 (38.2%) Don t know 50 (4.3%) 20 (4.8%) Other 149 (12.9%) 38 (9.2%) The view of how established immunosuppressive therapy is monitored given by hospitals is often contradicted by the views of GPs. GPs indicated that the primary care team or a combination of primary and secondary care, monitored established immunosuppressive therapy in 78% of cases when their local hospital had indicated that this was not the case for their patients. Hospital reports in organisational audit that Primary or Primary & Secondary Care used (Yes) or not (No) to monitor immunosuppressive therapy 2.7 How is established immunosuppressive therapy monitored for your patients? No Yes Primary care team 130 (32.9%) 644 (53.4%) * Dedicated secondary care monitoring service 35 (8.9%) 53 (4.4%) During hospital clinic visits 34 (8.6%) 46 (3.8%) Combination of primary and secondary care 177 (44.8%) 427 (35.4%) Don't know 9 (2.3%) 19 (1.6%) Other 10 (2.5%) 17 (1.4%) 13

14 Full questionnaire results table The table below contains the full list of responses to all questionnaires received back to the UK IBD Audit team, a total of 1675 questionnaires (both adult and paediatric). The denominator for each question varies depending upon the number of responses to that particular question and it is therefore provided within the number column for reference alongside each question Section 1 - Patient-specific questions Number Percentage Q1 How many GP consultations (including out of hours services) did the patient have in relation to their exacerbation of IBD in the 4 weeks prior to the indicated admission? Number of GPs reporting at least one consultation Median (IQR)1 Q2 Did you or a colleague have contact (by letter, phone or ) with any of the following people in the 4 weeks prior to the indicated admission other than to arrange the admission itself? (tick all that apply) 983/ (0-2) YES a. Hospital Consultant 548/ b. Hospital SpR 73/ c. IBD Clinical Nurse Specialist 112/ d. None 954/ Q3 Were any treatments initiated by you or a GP colleague in response to this exacerbation of IBD prior to the indicated admission? a. Yes 462/ b. No 1197/ Q3i If yes to Q3, please indicate any of the following that apply: Yes a. Start / Increase oral 5ASA 90/ b. Rectal 5ASA or rectal steroids 82/ c. Oral steroids 245/ ci. If yes to oral steroids, what was the intended duration of the course in 3 (2-4) weeks? [Median (IQR)] d. Other 126/ Other = Adalimumab / Adcal D3 / Antibiotics x31 / Anti-diarrhoea x3 / Anti-spasmodics x2 / Azathioprine x8 / Blood transfusion / Buccastem / Buscopan x2 / B12 Injection / Ciclosporin x2 / Co-phenotrope / Cyclizine x2 / Decreased or stopped steroids x2 / Diclofenac / Dioralyte / Ensure / Entocort tabs / Ferrous fumerate / Folic acid / Fortisip / Fybogel x2 / Hyoscine butylbromide x2 / Infliximab x2 / Iron tablets / Lactulose x2 / Lansoprazole / Loperamide x17 / Lotomil / Mebeverine x3 / Mesalazine / Metoclopramide x5 / Metrodopomide x2 / Methotrexate x2 / Movicol x2 / Normacol / Omeperazole x2 / Oxycodone / Pain control x7 / Peppermint oil capsules / Treatment for nausea / Volterol / 5MP / 6MP ) Q4 Had the patient attended an outpatient appointment for their IBD in a hospital during the 12 months prior to the indicated admission? a. Yes 1272/ b. No 289/ c. NA 101/ Q5 If the patient is under exclusive primary care follow up for IBD, do you know if the patient has any colon cancer surveillance requirements? a. Yes 38/ b. No 277/ c. Don t know 229/ d. NA 981/ Q5i If yes to Q5, do you know if these are being met? a. Yes 23/ b. No 6/ c. Don t know 7/

15 Section 2 - Organisation & structures of care for patients with known or suspected IBD Number Percentage Previously completed? a. I have already completed Section 2 for another patient & do not need to complete it again (number excluded from remaining questions) 67/ b. I have not completed Section 2 for a previous patient 1606/ Q1 How confident are you in recognising the key symptoms of IBD? a. Not confident 5/ b. Slightly confident 134/ c. Somewhat confident 1080/ d. Very confident 385/ Q2 How confident are you in dealing with acute exacerbations of IBD? a. Not confident 146/ b. Slightly confident 505/ c. Somewhat confident 855/ d. Very confident 98/ Q3 Do you feel you need any educational support in the management of IBD? a. Yes 1290/ b. No 308/ Q3i If yes to Q3, would you prefer support via: (tick all that apply) Yes a. advice 438/ b. Telephone advice 600/ c. Care pathways 675/ d. IBD CNS / Consultant visits 545/ e. Other 125/ Q4 When you see a patient with IBD who has relapsed, who would normally be your first point of contact? a. Consultant Gastroenterologist 659/ b. Gastroenterology SpR 284/ c. IBD Clinical Nurse Specialist 329/ d. Hospital Switchboard 67/ e. Don t know 38/ f. Other 226/ Q5 When needed is it usually possible for you to arrange an outpatient appointment for relapsing IBD patients within 7 days of your referral? a. Yes 597/ b. No 876/ Q6 What are the problems with accessing the appropriate help/access to secondary care? (please select the option that best describes your personal experience) a. I don t know who to contact in relation to IBD 128/ b. I know who to contact but lines of communication are slow 701/ c. I have no problems 483/ d. Don t know 70/ e. Other 187/

16 Q7 How is established immunosuppressive therapy (azathioprine / mercaptopurine or methotrexate) monitored for your patients? Yes a. By primary care team 774/ i) If monitored by primary care team, is this paid for by a Local Enhanced Service? 448/ b. A dedicated secondary care monitoring service 88/ c. During hospital clinic visits 80/ d. A combination of primary and secondary care 604/ e. Don t know 28/ f. Other 27/ Q8 If you do not currently monitor immunosuppressive therapy would you be prepared to do so under a shared care agreement? a. Yes 524/ b. No 57/ c. Don t know 78/ d. NA 631/

17 Appendices Appendix 1: Methodology and sample Methods All sites (adult & paediatric) that participated in the clinical audit element of the UK IBD audit 3rd round were asked to identify and audit details of 20 consecutive UC admissions and 20 consecutive CD admissions from 1st September 2010 through to 31st August All patients must have been admitted to hospital with a primary diagnosis of UC or CD as identified using defined ICD-10 discharge codes and must have remained as an inpatient for greater than 24 hours to exclude those patients admitted for day case procedures such as endoscopy. For each complete audited admission entered to the UK IBD audit web tool, the site generated a questionnaire that was sent by the hospital IBD team to the patient s general practitioner (GP). The responses to those questionnaires provided the data used to compile this report. Each site was provided with freepost envelopes to allow the GP s to return their questionnaires to the UK IBD audit team at the RCP. Alternatively an option was available to allow for the GP to enter their questionnaire response directly onto the UK IBD audit web tool using a selfgenerated password. Each questionnaire was allocated a unique cross reference number by the UK IBD audit web tool, allowing for a method of linking the response from each particular questionnaire response back to the relevant admission entered as part of the clinical audit. The use of the cross reference numbers has enabled cross analysis of data from each element of the UK IBD audit 3rd round whilst protecting and ensuring patient anonymity at all times. Datasets and standards used in the primary care questionnaire data collection process The dataset for the primary care questionnaire was agreed by the UK IBD audit steering group including input from the representative from the Primary Care Society for Gastroenterology and informed by the dataset used by the Improving Management in Gastroenterology (IMAGE) Project commissioned by the Health Foundation. Data collection tool The web tool included context specific online help including definitions and clarifications, internal logical data checks and feedback to enable more complete and accurate data. Security and confidentiality were maintained through the use of unique reference codes and personalised passwords that were created by the individual entering the data. Data could be saved during, as well as at the end of an input session. Recruitment For the process undertaken to recruit sites to the UK IBD audit rounds please refer to the appropriate reports at: Each site was requested to identify the relevant primary care clinician for every patient that they entered to the UK IBD clinical case note audit and to then generate and forward on the relevant letter and questionnaire. Covering letters were provided alongside each printed questionnaire, providing the reader with both the rationale for this element of the audit and contact information ( addresses and telephone numbers) from which further information about the UK IBD audit was available and to which any queries could be addressed. Data required Questionnaires had to be fully complete before they could be submitted for analysis onto the audit web tool. Where any questionnaires were returned to the central project team with a small number of incomplete questions the team allocated a code to the missing questions to enable submission of the questionnaire. This coded data was then removed from the database prior to analysis. 17

18 Inclusion and exclusion criteria To be included in the primary care questionnaire report analysis, returned questionnaires had to contain a unique cross reference code that could link back to a particular admission that was included in the clinical audit element of the UK IBD audit 3rd round. Responses with less than 95% of data fields completed were excluded from analysis. Audit governance The UK IBD audit 3rd round is a collaborative partnership between Gastroenterologists (the British Society of Gastroenterology), Colorectal Surgeons (the Association of Coloproctology of Great Britain and Ireland), Patients (Crohn s and Colitis UK), Physicians (the Royal College of Physicians of London) together with Paediatric Gastroenterologists (The British Society of Paediatric Gastroenterology, Hepatology and Nutrition). This primary care questionnaire report follows the publication by the UK IBD audit steering group of the National Reports of the Organisational Audits of Adult and Paediatric IBD services in the UK in May 2011 and the subsequent adult and paediatric reports of the results for the National Clinical Audits of adult and paediatric IBD Inpatient Care in the UK, in February These publications enable sites to not only benchmark their provision of both service and care against national standards, but also to identify areas of improvement and monitor change from the previous round in The audit is commissioned and funded by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP) with additional funding from Healthcare Improvement Scotland. The audit is co-ordinated by the Clinical Effectiveness and Evaluation unit (CEEu) of the Royal College of Physicians of London. Each hospital identified an overall clinical lead that was responsible for data collection and entry for their IBD Service. Data were collected by hospitals using a standardised method. The audit was guided by the multidisciplinary UK IBD audit steering group which oversaw the preparation, conduct, analysis and reporting of the audit. Any enquiries in relation to the work of the UK IBD audit can be directed to: ibd.audit@rcplondon.ac.uk 18

19 Appendix 2: Glossary / Abbreviations Abbreviation Full title 5ASA 5-Aminosalicyclic acid ACPGBI Association of Coloproctology of Great Britain and Ireland Anti TNF Anti-Tumour Necrosis Factor Alpha ASA Status American Society of Anaesthesiologists Status BPM Beat Per Minute BSG British Society for Gastroenterology BSPGHAN British Society for Paediatric Gastroenterology Hepatology and Nutrition CD Crohn's Disease CDT Clostridium Difficile Toxin CEEu Clinical Effectiveness and Evaluation Unit CQC Care Quality Commission CRP C-Reactive Protein o C Degrees Celsius F2 Foundation Doctor-Year 2 GP General Practitioner HQIP Health Quality Improvement Partnership IBD Inflammatory Bowel Disease IBDQIP Inflammatory Bowel Disease-Quality Improvement Project IQR Inter-Quartile Range MG/DAY Milligrams per Day NCAPOP National Clinical Audit and Patient Outcomes Programme NICE National Institute for Health and Clinical Excellence NSF National Service Framework RCN Royal College of Nursing RCP Royal College of Physicians SG Steering Group SHO Senior House Officer SSC Standard Stool Culture UC Ulcerative Colitis UK United Kingdom 19

20 Appendix 3: Members of the UK IBD audit steering group Chair Dr Ian Arnott, consultant gastroenterologist, Western General Hospital, Edinburgh Association of Coloproctology of Great Britain and Ireland Mr Bruce George, consultant colorectal surgeon, John Radcliffe Hospital Association of Coloproctology of Great Britain and Ireland Mr Graeme Wilson, consultant colorectal surgeon, Western General Hospital, Edinburgh British Dietetic Association Ms Miranda Lomer, consultant dietician, Guy's and St Thomas' NHS Foundation Trust British Society of Gastroenterology Dr Stuart Bloom, consultant gastroenterologist, University College Hospital British Society of Gastroenterology Dr Keith Bodger, consultant physician & gastroenterologist, University Hospital Aintree British Society of Gastroenterology Dr Barney Hawthorne, consultant gastroenterologist, University Hospital of Wales British Society of Gastroenterology Dr Keith Leiper, consultant gastroenterologist, Royal Liverpool University Hospital British Society of Gastroenterology Professor Chris Probert, consultant gastroenterologist, Bristol Royal Infirmary British Society of Gastroenterology Professor Jonathan Rhodes, professor of medicine, University of Liverpool British Society of Gastroenterology Mrs Chris Romaya, executive secretary British Society of Gastroenterology Dr Ian Shaw, consultant gastroenterologist, Gloucestershire Royal Hospital British Society of Gastroenterology Dr Abraham Varghese, consultant gastroenterologist, Causeway Hospital British Society of Paediatric Gastroenterology, Hepatology and Nutrition Dr Sally Mitton, consultant paediatric gastroenterologist, St George s Hospital British Society of Paediatric Gastroenterology, Hepatology and Nutrition Dr Richard Russell, consultant paediatric gastroenterologist, Yorkhill Hospital, Glasgow Health Services Modernisation Mr John Frankish, aneurin bevan health board Crohn s and Colitis UK (NACC) Mr Richard Driscoll, chief executive Crohn s and Colitis UK (NACC) Ms Elaine Steven, vice-president Primary Care Society for Gastroenterology Dr John O Malley, secretary of the primary care society for gastroenterology and medical director, Mastercall Healthcare Royal College of Nursing Crohn's and Colitis Special Interest Group Ms Karen Kemp, IBD clinical nurse specialist, Manchester Royal Infirmary Royal College of Nursing Crohn's and Colitis Special Interest Group Ms Allison Nightingale, IBD clinical nurse specialist, Addenbrooke s Hospital Royal College of Physicians Ms Rhona Buckingham, manager, Clinical Effectiveness and Evaluation Unit Royal College of Physicians Mr Calvin Down, project manager, UK IBD Audit Royal College of Physicians Ms Jane Ingham, director of clinical standards Royal College of Physicians Miss Aimee Protheroe, project coordinator, UK IBD Audit Royal College of Physicians 20

21 Dr Jonathan Potter, clinical director, Clinical Effectiveness and Evaluation Unit (Retired May 2011) Royal College of Physicians Dr Kevin Stewart, clinical director, Clinical Effectiveness and Evaluation Unit (August 2011) Royal College of Physicians Professor John Williams, consultant gastroenterologist, Abertawe Bro Morgannwg University NHS Trust & Director of Health Informatics Unit, RCP Royal Pharmaceutical Society of Great Britain Ms Anja St. Clair-Jones, lead pharmacist surgery and digestive diseases, Royal Sussex County Hospital 21

22 Appendix 4: Clinical audit participants Each of the sites listed below contributed details of IBD admissions towards the clinical audit element of the UK IBD audit 3rd round having submitted one or more cases for inclusion. Primary care questionnaires were sent out by these sites after the details of an admission had been fully entered onto the clinical audit web tool managed by the UK IBD audit project team. Sites were not asked to chase up any questionnaires that were not subsequently returned. Paediatric sites Addenbrooke's Hospital (Paediatric Gastroenterology unit) Alder Hey Children's Hospital Barts and The London Children s Hospital Birmingham Children s Hospital Bristol Royal Hospital for Sick Children Children s Services, Chelsea and Westminster Hospital Department of Child Health, University Hospital of Wales Great Ormond St Hospital, London Leeds General Infirmary (Paediatric Gastroenterology Unit) Leicester Royal Infirmary Children's Hospital Morriston Hospital (Paediatric Gastroenterology) North-East Scotland Paediatric Gastroenterology Network (Royal Aberdeen Children's Hospital, Ninewells Hospital and Raigmore Hospital combined) Nottingham Children's Hospital Oxford Children s Hospital Royal Belfast Hospital for Sick Children Royal Free Hospital (Paediatric Gastroenterology Unit) Royal Hospital for Sick Children, Edinburgh Royal Manchester Children's Hospital Royal Victoria Infirmary Children's Services Sheffield Children's Hospital Southampton Children's Hospital St George's Hospital (Paediatric Gastroenterology unit) Yorkhill Children's Hospital, Glasgow Adult sites Aberdeen Royal Infirmary Addenbrooke's Hospital Airedale General Hospital Altnagelvin Area Hospital Antrim Area Hospital Arrowe Park Hospital Barnet General Hospital Barnsley District General Hospital Basildon Hospital Bedford Hospital Belfast City Hospital Blackpool Victoria Hospital Borders General Hospital Bradford Royal Infirmary Brighton and Sussex University Hospitals NHS Trust (Royal Sussex County & Princess Royal Hospitals Combined) Bristol Royal Infirmary Bronglais General Hospital 22

23 Broomfield Hospital Caerphilly District Miner's Hospital Calderdale & Huddersfield NHS Foundation Trust (Huddersfield Royal Infirmary and Calderdale Hospital Combined) Causeway Hospital Central Middlesex Hospital Chelsea & Westminster Hospital Chesterfield Royal Hospital Colchester General Hospital Conquest Hospital Countess of Chester Hospital County Durham & Darlington NHS Foundation Trust (Darlington Memorial Hospital and Bishop Auckland Hospital Combined) Craigavon Area Hospital Crosshouse Hospital Cumberland Infirmary Daisy Hill Hospital Darent Valley Hospital Derriford Hospital Dewsbury & District Hospital Diana, Princess of Wales Hospital Dorset County Hospital Dumfries & Galloway Royal Infirmary Ealing Hospital East and North Hertfordshire NHS Trust (Lister Hospital & Queen Elizabeth II Hospital Combined) East Lancashire Hospitals Trust (Royal Blackburn Hospital and Burnley District General Hospital Combined) East Surrey Hospital Eastbourne District General Hospital Epsom General Hospital Fairfield General Hospital Freeman Hospital Friarage Hospital Frimley Park Hospital Furness General Hospital George Eliot Hospital Glan Clwyd Hospital Glasgow Royal Infirmary Gloucestershire Hospitals NHS Foundation Trust (Gloucestershire Royal and Cheltenham General Combined) Good Hope Hospital Great Western Hospital Guy's & St Thomas' NHS Foundation Trust (Guy's & St Thomas' Hospitals Combined) Hairmyres Hospital Harrogate District Hospital Heart of England NHS Foundation Trust (Birmingham Heartlands Hospital and Solihull Hospital) Hereford County Hospital Hillingdon Hospital Hinchingbrooke Hospital Homerton University Hospital Hull and East Yorkshire NHS Trust (Hull Royal Infirmary and Castle Hill Hospitals Combined) Imperial College Healthcare NHS Trust (Charing Cross, Hammersmith and St Mary's Hospitals 23

24 Combined) Ipswich Hospital James Cook University Hospital James Paget Hospital Jersey General Hospital John Radcliffe Hospital Kent & Canterbury Hospital Kettering General Hospital King George Hospital King's College Hospital Kingston Hospital Lagan Valley Hospital Lancashire Teaching Hospital NHS Foundation Trust (Chorley District General Hospital & Royal Preston Hospital Combined) Leeds Teaching Hospitals NHS Trust (Leeds General Infirmary & St James's Hospital Combined) Lincoln County Hospital Luton & Dunstable Hospital Macclesfield District General Hospital Maidstone Hospital Manchester Royal Infirmary Mater Hospital Mayday Hospital Medway Maritime Hospital Mid Staffordshire NHS Foundation Trust (Staffordshire General Hospital & Cannock Chase Hospital Combined) Milton Keynes Hospital Monklands Hospital Morriston Hospital Musgrove Park Hospital Neath Port Talbot Hospital Nevill Hall Hospital New Cross Hospital Newham University Hospital Ninewells Hospital Norfolk & Norwich University Hospital North Bristol NHS Trust (Frenchay and Southmead Hospitals Combined) North Devon District Hospital North Hampshire Hospital North Manchester General Hospital North Middlesex University Hospital North Tyneside General Hospital North West London Hospitals NHS Trust (St Mark's & Northwick Park Hospitals Combined) Northampton General Hospital Nottingham University Hospital NHS trust (Queen's Medical Centre & Nottingham City Hospital Combined) Peterborough City Hospital (prev Peterborough district hosp until Nov 2010) Pilgrim Hospital Pinderfields General Hospital Poole General Hospital Prince Charles Hospital Princess Alexandra Hospital, Harlow Princess of Wales Hospital 24

25 Queen Alexandra Hospital Queen Elizabeth Hospital Queen Elizabeth Hospital, Gateshead Queen Elizabeth Hospital, Woolwich Queens Hospital Queen's Hospital, Burton Rotherham Hospital Royal Albert Edward Infirmary Royal Berkshire Hospital Royal Bolton Hospital Royal Bournemouth Hospital Royal Cornwall Hospital Royal Derby Hospital Royal Devon & Exeter Hospital Royal Free Hospital Royal Glamorgan Hospital Royal Gwent Hospital Royal Hampshire County Hospital Royal Liverpool University Hospital Royal London Hospital Royal Oldham Hospital Royal Surrey County Hospital Royal United Hospital, Bath Royal Victoria Hospital Royal Victoria Infirmary, Newcastle Russells Hall Hospital Salford Royal Hospital Salisbury District General Hospital Sandwell and West Birmingham Hospitals NHS Trust (City Hospital and Sandwell Hospital Combined) Scarborough General Hospital Scunthorpe General Hospital Sheffield Teaching Hospitals NHS Foundation Trust (Royal Hallamshire Hospital & Northern General Hospital Combined) Sherwood Forest Hospitals NHS Foundation Trust (King's Mill Hospital & Newark Hospital Combined) Shrewsbury & Telford Hospital NHS Trust (Royal Shrewsbury Hospital & Princess Royal Hospital, Telford Combined) South Tyneside District Hospital Southampton University Hospitals NHS Trust (Southampton General Hospital & Royal South Hants Hospital Combined) Southport & Formby District General Hospital St George's Hospital St Helier Hospital St Mary's Hospital St Richard's Hospital Stepping Hill Hospital Stirling Royal Infirmary Stoke Mandeville Hospital Sunderland Royal Hospital Tameside General Hospital The Lewisham Hospital The Tunbridge Wells Hospital Torbay Hospital 25

26 Ulster Hospital University College Hospital University Hospital Birmingham NHS Foundation Trust (Queen Elizabeth Hospital, Birmingham & Selly Oak Hospital Combined) University Hospital Llandough University Hospital of Hartlepool University Hospital of North Durham University Hospital of North Staffordshire University Hospital of North Tees University Hospital of Wales University Hospital, Aintree University Hospitals Coventry & Warwickshire NHS Trust University Hospitals of Leicester NHS Trust (Leicester Royal Infirmary and Leicester General Combined) University Hospitals of Morecombe Bay NHS Trust (Royal Lancaster Infirmary & Westmorland General Hospital Combined) Walsall Manor Hospital Warrington District General Hospital Warwick Hospital West Cumberland Hospital West Hertfordshire Hospitals NHS Trust (Watford General Hospital & Hemel Hempstead General Hospital Combined) West Middlesex Hospital West Suffolk Hospital Western General Hospital Western Sussex Hospital Trust (Worthing and Southlands combined) Weston General Hospital Whipps Cross University Hospital Whiston Hospital Whittington Hospital William Harvey Hospital Wishaw General Hospital Withybush General Hospital Worcestershire Acute Hospitals NHS Trust (Worcestershire Royal Hospital & Alexandra Hospital Combined) Wrexham Maelor Hospital Wycombe Hospital Wythenshawe Hospital Yeovil District Hospital York Hospital Ysbyty Gwynedd 26

27 Appendix 5: References 1. Luces C, Bodger K. Economic burden of inflammatory bowel disease: a UK perspective. Expert Review of Pharmacoeconomics & Outcomes Research 2006; 6(4): Stone MA, Mayberry JF, Baker R. Prevalence and management of inflammatory bowel disease: a cross-sectional study from central England. European Journal of Gastroenterology & Hepatology 2003;15(12):

28 Royal College of Physicians 11 St Andrews Place Regent s Park London NW1 4LE Inflammatory Bowel Disease audit team Tel: +44 (0) /1566 Fax: +44 (0) ibd.audit@rcplondon.ac.uk

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