World Inflammatory Bowel Disease Day: The Quest To Make New Zealand More 'Patient-Friendly'
Around the world over fifty countries recognise the 19th of May as World IBD Day. IBD (or Inflammatory Bowel Disease) refers to two diseases, Crohn’s disease and ulcerative colitis. For New Zealand these diseases carry particular significance. Our country has the third highest incidence of IBD in the world. Over 20,000 people in New Zealand are affected. In addition to the impact these diseases have on their lives, there is a huge economic burden on the country. These are lifelong diseases that cause diarrhoea, extreme urgency, and abdominal pain. The intestines become red, ulcerated, and inflamed. Due to the symptoms, people are reluctant to discuss IBD. While the diseases can be managed with potent immunosuppressive medications, there is no cure. Twenty per cent of those affected are children.
In January 2017 twelve year old Nicole Thornton, who was diagnosed with Crohn’s disease at the age of eight, petitioned Parliament to pass a bill that would allow people who have serious illnesses the right to use workplace toilets when no public toilets are available. The petition was sponsored by the Rt. Hon. Trevor Mallard. Nicole went on to testify before the Health Select Committee on behalf of the thousands of New Zealanders who have IBD.
The fear of having an accident in public by not having access to a toilet is very real. Many people with IBD are simply afraid to leave home. While several business owners will let those affected use their toilets, many do not; people with Crohn's disease and ulcerative colitis often do not have time to explain their personal medical histories before having an embarrassing accident.
The House Select Committee, after hearing Nicole’s and others’ testimonies made the following recommendations:
- “publicising the cards that are issued to those who need immediate toilet access”
- “encouraging business owners to allow toilet access via an education campaign”.
Nicole is launching a campaign to encourage businesses to help make a difference in the lives of those who deal every day with the symptoms of IBD. She is asking them to display removable stickers (in both English and Te Reo) in their windows. The stickers indicate that they honour the “I Can’t Wait Card”. These are cards issued by Crohn’s and Colitis NZ Charitable Trust that identify people with medical problems who may need a toilet urgently. A doctor’s signature is now required to obtain a card.
The Lower Hutt City Council, representing the residents of Nicole’s home city, have taken up the mantle as the first city council to endorse this campaign. They will be displaying the stickers in the windows of all their city buildings and will be encouraging local businesses to follow their lead. The Hutt Valley Chamber of Commerce has also offered their support. Hopefully, other city councils will follow suit, making NZ a “patient-friendly” place for its people and visitors throughout our country.
There will be a media event to launch this campaign in Lower Hutt. It was tentatively arranged for late March, but given the current COVID-19 situation, this event has been postponed for later this year.
World IBD Day on 19 May is a day set aside each year to raise awareness and understanding of these diseases which affect ten million people worldwide.