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National Surveys
CCA is always advocating for increased awareness surrounding Crohn's disease and ulcerative colitis. CCA often use National Surveys to identify areas where we can improve the lives of people living with Crohn's disease or ulcerative colitis.
Following on from our 2008 campaign highlighting the issue of toilet access for people with IBD, CCA this year again surveyed members regarding recognition of the Can't Wait Card and ease of access to toilets. Unfortunately, the results showed very little change in attitudes by the general public, with many retailers still denying people with IBD access to their toilets.
However, the survey also showed that many members did not produce their Can't Wait Card when requesting use of the toilet. CCA is working with major business and community groups to increase recognition of the card, and ensure cardholders are given priority access to their toilets. Businesses that join the Can't Wait Card program will display window stickers of the card. The success of the program will be assisted by members producing their cards when required.
Survey results
- 81 per cent of respondents were women;
- 66 per cent had Crohn's disease, 32 per cent had colitis and 2 per cent had an indeterminate diagnosis;
- 61 per cent reported difficulty accessing toilets, the most problematic venues being petrol stations (20%), retail outlets (20%), cafes (18%), and shopping strips (18%);
- 41 per cent were denied access, most often at cafes (37%), petrol stations (21%), retail outlets (16%) and shopping strips (11%);
- 70 per cent of respondents stayed at home during a flare up for fear of not being able to access toilets;
- 27 per cent produced their Can't Wait Card while requesting toilet access;
- 43 per cent of people who produced their card found it helped them gain access;
- 14 per cent of respondents who took part in the 2008 survey noted an improvement in venue operators' willingness to allow access to their toilets when shown the Can't Wait Card;
- 54 per cent of respondents reported having a toilet accident in a public place; and
- 77 per cent ceased activities due to fear of having an accident in public during a flare up, mainly catching public transport (17 per cent), going shopping (15%), travelling interstate or overseas (15%), playing sport (15%), attending a party (12%) or going to the movies (11%).
▪ In May 2009, 966 interviews were completed with those suffering from either Crohn’s or Colitis. Recruitment for the research used the mail and email database of Crohn’s & Colitis Australia.
The experience of Crohn’s and Colitis
▪ 63 per cent of research participants have Crohn’s and 37 per cent have colitis. Just under half have between one and three flare-ups per year.
▪ More than one-quarter of respondents are uncomfortable talking about their condition. There is a general perception that people will not understand as well as reluctance to discuss the condition because it is "private".
Work life
▪ At first it might appear that Crohn’s and colitis have little impact on the workplace. Part-time work is very close to the national average, suggesting that the effect of either condition is not profound. However, more than three-quarters report that their work life has changed as a result of their illness.
▪ Change comes from a wide range of issues: time off work, restriction of duties, and lower productivity, are the main areas where illness affects individuals.
▪ There are also significant costs in lost wages. One-quarter report lost wages as a result of illness. Those with Crohn’s are most affected, with an average estimated loss of $5130 ($1025 for those with colitis).
▪ Just over one-in-10 report discrimination in the workplace. This mostly takes the form of lack of support and understanding by employers and co-workers.
Education
Travel
▪ Restrictions on travel are profound for those with Crohn’s and colitis. Just under two-thirds have their ability to travel compromised through illness. Illness also affects employment by restricting the performance of duties that have an element of travel.
▪ The main concerns with travel are concerns about flare-ups while travelling and concerns about receiving medical attention should people require it.
Other concerns are simply being too unwell to travel and difficulties with travel insurance.
Medical expenses
▪ The average annual cost of doctors and medical tests is $1047 and medication costs $1220 p.a. For just over one-in-10 these costs have an "extreme impact" on their household finances.
Medication and review
▪ A bright spot for those with Crohn’s and colitis is the frequency of medical review of their medication and changing of medication on a frequent basis.
▪ There have been many new developments in medical management of Crohn’s and colitis and the survey findings show that patients are receiving these. Review and consultation from both specialists and doctors (GPs) is frequent.
▪ There are a large number of potential medical treatments and on average individuals are using two different types of medication to manage their condition.