Rehabilitation needs following
Stoma formation: A Patient Survey
Bob Azevedo-Gilbert
CO-Founder of
THE INSIDE-OUT SUPPORT GROUP
Background
 Inside Out sought to gain feedback from
ostomists in the Harrow area
Agreement gained from key stakeholders
Funding received from the St Mark’s Hospital
Foundation for a postal survey
Few such surveys exist – Wade 1989,
Richbourg et al (2007) – in USA
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Aims of Survey
Level of satisfaction with formation and support
provided up to and during the stoma operation
Views on hospital stay: did they receive enough
training on how to change their appliances before
going home
Level of satisfaction with care after discharge
from hospital and if further help was needed
Views on living with a stoma and achieving
quality of life
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Sample Questions
9) Just before you were discharged, did you receive information on any of the
following?
(Please tick all that apply)
National stoma support group
A local support group
Hospital follow up
Returning to work
Possible complications of the
surgery
Useful stoma web-sites
Travel
Manufacturer phone numbers
Heavy lifting
Prescriptions arrangements
Diet
Driving
10) Looking back on the care you received whilst in hospital did you feel any
additional information and/or support was missing?
(Please tick one box)
Yes
No
Don’t Know
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Method – two phases
Questionnaire approval & development
Pilot – 10 ostomists – 3 changes
Mail shot 1 – Inside Out members. ? Where
stoma care received
Mail shot 2 – Other ostomists living in Harrow
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The Questionnaire
1. Time living with stoma >12months
2. Before you had the stoma formed
3. Your care immediately after your stoma
operation
4. Your stoma care whilst still in hospital
5. After your discharge from hospital
6. Living with a stoma
7. Demographics
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Results
100 Respondents ( 3 returned too late)
38% response rate – no reminders sent
60% response rate from Inside Out members (62 of 103)
24% response rate from others (38 of 160)
Good level of answer completion
12% highest non response
Most added free text when prompted
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Demographic Findings
87% spoke English as their first language
Mean age – 70 years
58% Males and 42% Females
62% Married & 15% Single
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Practical training
Q3b – How satisfied with the practical stoma training during
hospital stay?
Level of
satisfaction
very satisfied
satisfied
neutral
dissatisfied
very
dissatisfied
No
response
Percentage
29%
40%
18%
4%
3%
10%
 80% stated that the majority of this training provided by the
Stoma Care Team
 19% stated their training was mainly from their ward nurse
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Confidence at discharge
Did being on Enhanced
Recovery Programme (ERP)
impact confidence in changing
appliances at the time of
discharge?
The responses from the whole
sample are compared to the
17 patients who were entered
on this programme
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Follow up
59% saw the Stoma Nurse in the out-patients
clinic after discharge
35% had a 1 to 1 appointment with a Stoma
Nurse within the first month
Nearly all were satisfied or very satisfied the
content and the timing of this appointment
(90%)
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The nature of the support
needed during first 6 months
“I needed to know about the
accidents you can have with
the stoma and how it can
overflow for no particular
reason and that there is no
reason why”
“I feel like I was the only one
cooping with this problem I felt
very depressed and would
have liked to talk to someone
who understood”
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Information
– some difficulties can not be anticipated
Level of
satisfaction
very
satisfied
29%
satisfied
neutral
dissatisfied
31%
16%
5%
very
dissatisfied
2%
No
response
17%
Was their a difference in satisfaction between those reporting colorectal Surgeon and
those reporting Stoma care nurse?
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In need of help
after discharge
“I had been taught well, but its
difficult with no medical back
up at home! Still extremely
weak, ill when discharged, so
everything felt difficult”
“Because it was new,
continually worried that I
would have leaks etc.”
“I had many problems, the
Stoma Nurse had visited me at
home initially and then
arranged a clinic appointment
which help sort out the
remaining difficulties”
“ I needed encouragement to
be able to return to full-time
work/play & sexual activities
and being able to be selfsufficient within the
community”
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Complications
 71% experienced some
complications
 When a complication
occurred the stoma nurse
was the main health
service they used
 When asked who they
might contact for help in
the future most replied
that the Stoma Care
Nurse would be their first
point of call. But would
see their GP
Nature of complications
experienced
 Hernia – 9
 Sore Skin – 9
 Stoma Blockage – 9
 Stoma Leakage - 8
 Prolapsed/poor position of
stoma - 7
 Diarrhoea or bleeding from
bowel - 4
 Appliance issues - 3
“I had many day to day problems occur, too many to list”
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GP Role
37 Free text responses,
reasons collated
 Wound care – 9
 Prescriptions – 5
 Bowel advice – 4
 Other complications – 8
 Support – 5
 Specific stoma problems – 2
 Can’t remember why - 2
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Which services would you most likely
to contact for help in the future?
Services contacted
for help
Total
response
s
Stoma Care Nurse
Rank 4
Rank 5-7
incl
3
1
1
16
5
1
1
5
12
14
1
0
10
1
1
2
2
4
Stoma Association
13
4
2
1
4
2
Specialty Hospital
13
0
3
7
2
1
Other
2
1
Rank 1
Rank 2
Rank 3
56
41
10
The GP
33
10
Hospital Dr’s
32
NHS direct
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1
Do health services
understand?
“Until you have lived with
a stoma or someone who
has a stoma you do not
understand the issues that
stoma patients can go
through both mentally
and physically”
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Return to work
“I didn’t feel ready to return to work I felt so ill but had no
option as I didn’t know where to go to get any support and I
was running out of money and getting into debt”
 Of the 30 respondents who had returned to work, 23 had told
their manager
 What would have been helpful?
Staged return to
work?
Disabled toilet
Time to attend
appointments
11
7
16
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Prescriptions
Have you experienced delay in receiving your stoma
products?
Yes = 30%
33 free text comments – more overt criticism of this
subject than any other:
“Used to be no problem, phone my supplier direct, who then advised
me of delivery. Now, I must fax the GP surgery, they make out a
prescription & send it to supplier, second class post, on receipt
supplier sends out my stoma products this way I have no idea when
my products will arrive!”
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KEY Points
Need for verbal & written information
Acute needs following discharge
High perception of stoma – related
complications
On going support needs
Difficulties in living with a stoma
Overall most patients are satisfied with care
received
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Recommendations
Keep individuals on speciality wards
Prioritise support to emergency patients
Insufficient written information-giving, us of
the Support Buddy and signposting to websites
Home visits and accessible post-discharge
support
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The Future
The survey findings have been extremely educational demonstrating that
there are many aspects of ostomists wellbeing.
 Information pack
 Ward training-assessment of clinical competence is carried out on a one to
one basis
 Knowledge, skill & practicalities for Health Care Professionals (Dansac)
 We have with the aid of the Community SCN Sarah Varma, St Mark’s
Colorectal Consultant J Warusavitarne, Fittleworth’s Laura McLoughlin and
myself to go to our GP surgery's and educate them about the why’s and
wherefores about stomas
 We are working closely with Dr Y Inspector Clinical Psychologist at St
Mark’s who would like to construct a patients pathway incorporating the
psychological aspects of living with a stoma
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INSIDE OUT SUPPORT GROUP
STOMA SUPPORT GROUP OF THE YEAR 2012
(OSTOMY LIFESTYLE AWARD WINNERS 2012)
Patients highlighted changes
in care overtime..
“No Stoma Nurses were in existence at the time I had my
stoma in mid – 60’s”
“There were no Stoma Care Nurses in my day”
“Stoma care is 100% better, bags are so different from their
heavy rubber smell things we had”
“In the 54 years I’ve had it I have seen many changes mostly
for the best. But, I have been dismayed by the commercial
companies avidly selling their wears e.g. my appliance is
now regarded as an anachronism because it is certainly oldfashioned but far more practical for me as it is nonadhesive. Does not stop me from living a very active life (20
years as F A referee) and still work as a professional
magician”
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