The Next Five Years

 No national service framework  Patchy quality of care  Over 200,000 patients  Not topical  Lack of evidence for commissioning  Little political support

2006 Audit  First national audit of IBD in UK  Variable service provision ◦ Specialist gastrointestinal wards ◦ Low level of IBD Nurses ◦ Many beds per toilet ◦ Poor dietetic cover ◦ Stool cultures and CDT ◦ Inadequate use of prophylactic heparin

Change Implementation  Presentation at BSG/ACP 2007  8 Regional meetings ◦ Local results presented ◦ Barriers to change discussed  Web based document repository  Selected site visits

Stakeholders

2 nd Round of Audit  Reassess following publicity/interventions  Inclusion of paediatric sites  Few alterations of data set  Data now included in the Annual Health Check

2008 National IBD Audit Results West Herts contributed the required 40 cases(20 UC,20 CD)

Methods  Audit 1.Organisation of IBD services - 1st September Activity data from 1 st June st August Individual patient care  20 CD and 20 UC  working backwards from 31st August 2008  Data collected on 6135 patients ◦ 2981Ulcerative Colitis ◦ 3154 Crohn’s Disease

Activity and Mortality Yearly activity Ulcerative colitis50 (25-105)47 (24-90) Crohn’s disease61 (30-112)57 (31-111) Inpatient mortality Ulcerative colitis1.6%1.5% Crohn’s disease1.2%1.1% Yearly surgical activity Ulcerative colitis11 (5-30)10 (4-19) Crohn’s disease16 (9-40)14 (7-29)

Summary  Notable improvements ◦ IBD Nurses ◦ Specialist wards ◦ Prophylactic heparin ◦ Avoidance of maintenance steroids ◦ Laparoscopic surgery ◦ Continues to be a Consultant CRS delivered service  Modest improvement ◦ Stool cultures and samples for C.Diff ◦ Bone protection

Summary  Areas for improvement ◦ Multidisciplinary working ◦ Dietetics ◦ Toilets ◦ Psychological support ◦ Research involvement and registers ◦ Pouches (for discussion)

Making Change a Reality  Regional meetings  Document repositories with web access  Application to Health Foundation for funding for more intensive help  Assessed by further rounds of National IBD Audit  Political Lobbying

Action Points Review service with 2008 Audit results and National IBD standards Support clinical research

 Psychologist/counsellor  Rheumatologist  Dermatologist  Opthalmologist  Obstetrician  Close links with a GP with IBD skills

 The IBD team should have timetabled weekly meetings  Complex case review  Run as clinical governance meetings,minutes,attendees recorded

 Patients should have access to a joint medical-surgical clinic  Defined arrangement for’between clinic discussions’  IBD surgery should be performed by recognised colorectal surgeons who are part of the IBD team  Pouch failure should be managed in a high volume specialist unit

 Local guidance should be developed for the identification and referral of suspected IBD patients/GP’s should be prepared to review to review their diagnosis in patients with unresponsive,atypical or troublesome symptoms  A rapid access pathway should be established between primary and secondary care for rapid consultation and assessment,new patients should be contacted within two weeks and seen within 4 weeks  Newly diagnosed patients should be rapidly transferred to the specialist team

 Access to a specialist dietician should be available for all patients  All forms of nutritional therapy should be available including full liquid diet as therapy for crohn’s disease

 There must be defined clinical responsibility and protocols for the prescribing,administration and monitoring of these therapies in an appropriate clinical setting.  Outcomes should be reviewed regularly and audited prospectively audited.

 Inpatients with IBD should wherever possible,be cared for on a designated specialist ward.  Wards for IBD patients should have a minimum of one toilet for 3 beds easily accessible.  24 hour critical facilities should be available

 Patients requiring endoscopy because of UC relapse should have the procedure within 72 hours  CT/MRI/contrast studies for out patients should be available within 4 weeks

 Defined arrangements should exist for admitting IBD patients direct to the specialist ward or area  Patients should be seen with a specialist gastroenterologist/or colorectal surgeon within 24hours  All IBD patients admitted should be notified to the IBD medical or surgical specialist nurses.  All IBD patients admitted should be weighed and their nutritional needs assessed.

 IBD Register  Annual review by phone,OPD  Criteria for annual review should be agreed  Dedicated phone line  Specialist review within 5 days  Full range of OP arrangements should be in place,including OPD,guided self- management with access to support when required,and care in a primary or intermediate care setting with defined links to the IBD team.

 IBD nurse (0.3 WTE) watford  OPD and endoscopy at hemel,watford to continue,OPD at HMH to continue  Secretarial and admin support to remain at all sites  Funding for IBD nurse at hemel confirmed

IBD Team Minimum Resources- based on population of 250,000  2 WTE Gastroenterologists  2 WTE Consultant CRS  1.5 WTE CNS with identifed role and competency in IBD  1.5 WTE CNS with identifed role and competency in stoma therapy and pouch surgery  0.5 WTE dietitian allocated to Gastroenterology  0.5 WTE administrative support for the IBD MDT, database recording and audit  1 named histopathologist- special interest in Gastro  1 named radiologist- special interest in Gastro  one named pharmacist with a special interest in Gastroenterology IBD Standards 2009

 Slightly lower overall inpatient medical numbers,slightly higher numbers of surgical IBD patients  Lower dietetic sessions/no IBD nurse sessions  5 pouch procedures performed,national average 1-7

 No access to specific psychological support  No specific paediatric to adult handover clinic  No trust written guidelines for management of acute or severe colitis,but national guidelines used by gastro department staff  No patient information on who to contact in the event of a relapse

 Patients in relapse are nearly all seen within 2 weeks,nurse-led drop-in clinic needs to be established  80% of patients received prophylactic heparin  Lengths of stay,investigations,treatments and outcomes all as good as,or better than national average.

 Appointment of an IBD nurse at Hemel  £1.5 million spend on eliminating mixed sex wards with new wet rooms  Implementation of a Consultant-led nutrition team  Establishment of a patient register  Increased research activity  Two new consultants in past two years

2010 National IBD Audit  Audit services specifically against IBD standards  Biologics register

Organisation IBD Nurse specialists56% Sessions 6 62% Sessions 8 Gastro wards67%75% Meetings GI & CRS 74%66% Joint/parallel surgical-medical clinic 47%49% Toilet facilities (Beds per toilet)

Organisation WTE Consultant CRS3 (2-4) WTE Stoma Nurses (SN) 2 (1-3) 4% None 2 (1-3) 4% None Seen SN during admission (Electives) 54%64% IBD Standards 1.5 WTE Clinical Nurse Specialists with an identifed role and competency in stoma therapy and ileo-anal pouch surgery

Clinical Care Heparin62% (46-77)72% (61-86) Stool cultures55% (45-65)62% (50-74) C. Diff45% (31-59)57% (42-69) Seen by dietitian37% (19-49)33% (18-45) Weighed on admission 52% (35-72)57% (40-80)

Clinical Care No.operations (Elective %) UC 715 (57%) CD 1092 (50%) UC 840 (64%) CD 1184 (59%) Consultant CRS Electives (operating/assisting) UC 92% CD 87% UC 94% CD 90% Consultant CRS Non-elective (operating/assisting) UC 77% CD 65% UC 78% CD 64% Laparoscopic Elective UC 10% CD 12% UC 15% CD 24% Laparoscopic Non-elective UC 5% CD 8% UC 10% CD14%

Number of Ileo-anal pouch operations performed on site National 2008 Median: 3 IQR: 1-7 N=149 National 2006 Median: 4 IQR: 2-7 N=122 No. of ileo-anal operations performed on site No of Sites Surgeons performed Ileo-anal pouch surgery on site in 72% (130/180) of sites in % (157/205) in 2008

2009 Audit Data  77% of sites do pouches  Median 3 (IQR 1-7) per year  Paediatrics- 66% of sites do pouches (15/23) - median 0 (IQR 0-1)! - 60% no pouches in year

Participation in national IBD Audit 75%93% Searchable IBD database 34%39%

 Virtually no participation in clinical trials ◦ Only 2 patients in whole audit

Primary Endpoint  Does 6-MP prevent or delay post- operative recurrence of Crohn’s Disease?  Plan to recruit 234 patients across UK.  Recruitment phase 3 years, with follow-up for 3 years  This is the first truly double blind placebo controlled trial of a thiopurine in post operative Crohn’s disease  On UKCRN portfolio of studies

 Construct Study ◦ Infliximab v Ciclosporin in steroid resistant ulcerative colitis

 Improvements in:  Provision of dedicated gastro wards  Increased number of IBD nurses  Increased use of heparin  Increased use of stool cultures

 Decline in service:  Physician/surgeon meetings  Lower levels of dietetics/specific toilet facilities/psychological support

 Where should IBD patients receive their care?  Is shared care feasible?  Patients want care close to home with continuity  Are IBD patients second class citizens as most are waiting behind two week cancer referrals for OPD appts?