Transcript IBD SERVICES WEST HERTS

The Next Five Years
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No national service framework
Patchy quality of care
Over 200,000 patients
Not topical
Lack of evidence for commissioning
Little political support
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First national audit of IBD in UK
Variable service provision
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Specialist gastrointestinal wards
Low level of IBD Nurses
Many beds per toilet
Poor dietetic cover
Stool cultures and CDT
Inadequate use of prophylactic heparin
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Presentation at BSG/ACP 2007
8 Regional meetings
◦ Local results presented
◦ Barriers to change discussed
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Web based document repository
Selected site visits
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Reassess following publicity/interventions
Inclusion of paediatric sites
Few alterations of data set
Data now included in the Annual Health
Check
West Herts contributed the required
40 cases(20 UC ,20 CD)
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Audit
1. Organisation of IBD services - 1st September
2008
2. Activity data from 1st June 2007 - 31st
August 2008
3. Individual patient care
 20 CD and 20 UC
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working backwards from 31st August 2008
Data collected on 6135 patients
◦ 2981Ulcerative Colitis
◦ 3154 Crohn’s Disease
Yearly activity
2006
2008
Ulcerative colitis
50 (25-105)
47 (24-90)
Crohn’s disease
61 (30-112)
57 (31-111)
Yearly surgical activity
2006
2008
Ulcerative colitis
11 (5-30)
10 (4-19)
Crohn’s disease
16 (9-40)
14 (7-29)
Inpatient mortality
2006
2008
Ulcerative colitis
1.6%
1.5%
Crohn’s disease
1.2%
1.1%
www.ibdstandards.org.uk
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Notable improvements
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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
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Areas for improvement
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Multidisciplinary working
Dietetics
Toilets
Psychological support
Research involvement and registers
Pouches (for discussion)
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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
Review service with 2008 Audit results
and
National IBD standards
Support clinical research
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Psychologist/counsellor
Rheumatologist
Dermatologist
Opthalmologist
Obstetrician
Close links with a GP with IBD skills
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The IBD team should have timetabled weekly
meetings
Complex case review
Run as clinical governance meetings
,minutes ,attendees recorded
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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
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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
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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
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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.
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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
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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
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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.
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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 selfmanagement with access to support when
required,and care in a primary or
intermediate care setting with defined links
to the IBD team.
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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
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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
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0.5 WTE administrative
support for the IBD MDT,
database recording and
audit
1 named histopathologistspecial interest in Gastro
1 named radiologistspecial interest in Gastro
one named pharmacist
with a special interest in
Gastroenterology
IBD Standards 2009
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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
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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
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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.
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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
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Audit services specifically against IBD
standards
Biologics register
Organisation
2006
2008
56%
Sessions 6
67%
62%
Sessions 8
75%
Meetings
GI & CRS
74%
66%
Joint/parallel
surgical-medical clinic
47%
49%
4.5
4.3
IBD Nurse specialists
Gastro wards
Toilet facilities
(Beds per toilet)
Organisation
2006
2008
WTE Consultant CRS
3 (2-4)
3 (2-4)
2 (1-3)
4% None
54%
2 (1-3)
4% None
64%
WTE Stoma Nurses
(SN)
Seen SN during
admission (Electives)
IBD Standards
1.5 WTE Clinical Nurse Specialists with an identifed role and
competency in stoma therapy and ileo-anal pouch surgery
Clinical Care
2006
2008
Heparin
62% (46-77)
72% (61-86)
Stool cultures
55% (45-65)
62% (50-74)
C. Diff
45% (31-59)
57% (42-69)
Seen by dietitian
37% (19-49)
33% (18-45)
Weighed on
admission
52% (35-72)
57% (40-80)
Clinical Care
No.operations
(Elective %)
Consultant CRS Electives
(operating/assisting)
Consultant CRS Non-elective
(operating/assisting)
Laparoscopic Elective
Laparoscopic Non-elective
2006
2008
UC 715 (57%)
CD 1092 (50%)
UC 840 (64%)
CD 1184 (59%)
UC 92%
CD 87%
UC 94%
CD 90%
UC 77%
CD 65%
UC 78%
CD 64%
UC 10%
CD 12%
UC 15%
CD 24%
UC 5%
CD 8%
UC 10%
CD14%
Surgeons performed Ileo-anal pouch surgery on site in 72% (130/180) of sites
in 2006 - 77% (157/205) in 2008
Number of Ileo-anal pouch operations performed on site
30
25
No of Sites
National 2008
Median: 3
IQR: 1-7
N=149
20
15
National 2006
Median: 4
IQR: 2-7
N=122
10
5
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0
5
10
15
20
25
30
35
No. of ileo-anal operations performed on site
40
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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
2006
2008
Participation in
national IBD Audit
75%
93%
Searchable IBD
database
34%
39%
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Virtually no participation in clinical trials
◦ Only 2 patients in whole audit
Primary Endpoint
 Does 6-MP prevent or delay postoperative recurrence of Crohn’s Disease?
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Plan to recruit 234 patients across UK.
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Recruitment phase 3 years, with follow-up for 3
years
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This is the first truly double blind placebo
controlled trial of a thiopurine in post operative
Crohn’s disease
On UKCRN portfolio of studies
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Construct Study
◦ Infliximab v Ciclosporin in steroid resistant
ulcerative colitis
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Improvements in:
Provision of dedicated gastro wards
Increased number of IBD nurses
Increased use of heparin
Increased use of stool cultures
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Decline in service:
Physician/surgeon meetings
Lower levels of dietetics/specific toilet
facilities/psychological support
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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?