Rehabilitation needs following Stoma formation: A Patient Survey

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 www.iossg.org.uk

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 www.iossg.org.uk

Sample Questions 9) Just before you were discharged, did you receive information on any of the following? (Please tick all that apply) 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 www.iossg.org.uk

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 www.iossg.org.uk

The Questionnaire • Time living with stoma >12months • Before you had the stoma formed • Your care immediately after your stoma operation • Your stoma care whilst still in hospital • After your discharge from hospital • Living with a stoma • Demographics www.iossg.org.uk

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 www.iossg.org.uk

Demographic Findings • 87% spoke English as their first language • Mean age – 70 years • 58% Males and 42% Females • 62% Married & 15% Single www.iossg.org.uk

Practical training Q3b – How satisfied with the practical stoma training during hospital stay? • 80% stated that the majority of this training provided by the Stoma Care Team • 19% stated their training was mainly from their ward nurse www.iossg.org.uk

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 www.iossg.org.uk

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%) www.iossg.org.uk

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” www.iossg.org.uk

Information – some difficulties can not be anticipated Was their a difference in satisfaction between those reporting colorectal Surgeon and those reporting Stoma care nurse? www.iossg.org.uk

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 self-sufficient within the community” www.iossg.org.uk

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” www.iossg.org.uk

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 www.iossg.org.uk

Which services would you most likely to contact for help in the future? www.iossg.org.uk

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” www.iossg.org.uk

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? www.iossg.org.uk

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!” www.iossg.org.uk

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 www.iossg.org.uk

Recommendations • Keep individuals on speciality wards • Prioritise support to emergency patients • Insufficient written information-giving, us of the Support Buddy and signposting to web-sites • Home visits and accessible post-discharge support www.iossg.org.uk

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 www.iossg.org.uk

INSIDE OUT SUPPORT GROUP STOMA SUPPORT GROUP OF THE YEAR 2012 (OSTOMY LIFESTYLE AWARD WINNERS 2012)

Patients highlighted changesin 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 old-fashioned but far more practical for me as it is non-adhesive. Does not stop me from living a very active life (20 years as F A referee) and still work as a professional magician” www.iossg.org.uk

Rehabilitation needs following Stoma formation: A Patient Survey