October 5, 2012
Let’s face it – ostomy care is not something most people are keen to talk about. But that’s all the more reason we support World Ostomy Day on the 6th of October.
Through our work, we often meet people who have had life-saving ostomy surgery. What never ceases to amaze us is the profound impact an ostomy can have on people’s lives. Yes, they’ve lost continence but they can also lose confidence – the confidence to work and to socialise.
It’s the social impact that can be hardest to adjust to. The stigma that comes with having a device attached to one’s abdomen has been hard to shake, even though technology has come a long way from the less sophisticated devices used just a few decades ago.
Raising awareness, improving lives
There are 700,000 people in Europe in need of ostomy care, so how come their voices are so rarely heard?
The patient advocates we meet at conferences or when we consult about what users want from new devices are the exception. For the majority of people with a stoma, the natural tendency is to keep a low profile rather than advertise the fact that they are incontinent.
To be blunt, most of us would be happier to be a patient advocate for hip replacements or pacemakers than for colostomy bags. This is entirely understandable but it comes with consequences.
The fact that ostomy care is not often spoken about leads to misunderstandings and can be a barrier to social and public policy changes which would improve quality of life for the millions of people worldwide who live with an ostomy.
World Ostomy Day aims to change that. A series of events is being held around the globe to raise awareness and debunk myths and misconceptions.
We plan to participate in at least one or two events locally. See what’s happening near you.
By holding seminars and demonstrations, along with advertisements and media reports, regional ostomy groups will deepen public understanding and help to get ostomates the care they need.
This can lead to some very practical measures which improve quality of life. For example, did you know that the Dutch Ostomy Association is calling for a waste bin with a lid to be made available in public toilets across the country?
They want restaurants, bars and cinemas to make it easier for ostomates to dispose of their bags hygienically. If bins with lids were available everywhere, it would dramatically increase the mobility of people with an ostomy. They could socialise with confidence knowing that public venues were ‘ostomy accessible’.
What can policymakers do?
Working with patient groups is just one component of what we do. Another is talking with payers and policymakers about their role in improving ostomy care in Europe.
To support this we recently published a new position paper on Access to Ostomy Supplies and Innovation. We’ve also been working on companion background paper which will be available shortly.
We’ll continue to engage with all stakeholders to play our part in raising awareness – and lowering barriers – to optimal ostomy care.
As suggested by the theme of this year’s World Ostomy Day – Let’s be heard! – it’s time to have a full and open conversation about ostomy care. We are keen to contribute and look forward to fruitful discussions on the 6th of October…and beyond. For more, visit the European Ostomy Association and International Ostomy Association.
Dr. Nathalie de Dieuleveult
International Marketing Director Ostomy, Urology – B Braun
Vice President, Global Government Affairs & Health Policy – ConvaTec
Co-Managing Director Hollister Europe Limited – Hollister