Mary Kennedy, IBD Clinical Nurse Specialist Looks At The ‘The IBD Manifesto’
Inflammatory Bowel Disease (IBD) is a manifesto for young people by young people and was supported by Abbott. It provides a forum for our patients to voice their healthcare needs amongst themselves and us as healthcare professionals.
The manifesto (click here to download) is a powerful and most welcome document in that it is the first time that young people in Ireland who suffer from IBD have been given a platform to communicate what they believe are the key issues facing them, what they would like to achieve and what they would like to see changed for the better.
The manifesto came about through a number of workshops involving young Irish people with IBD and resulted in 12 calls to action. Some of these changes as listed below are practical in nature such as having control and relief from symptoms, improved access to toilet facilities and having IBD recognised by government as a longterm illness. Other changes are more aspirational such as patients learning how to cope with and accept their condition.
The manifesto increases awareness of the emotional, physical and indeed the social impact of IBD on the patients.
These actions give thought provoking insight into what it is like to be a young person living with Crohn’s disease or ulcerative colitis. It is hoped that it will make the general population more aware of their needs and expectations when faced with this debilitating illness eg. better access to toilet facilities. Patients need access to toilets in a hurry so a lack of public toilets can mean they may miss out on social events knowing there are no facilities nearby. Travelling becomes an issue due to the lack of public toilets and options are limited if travelling by bus or Luas.
The manifesto document empowers patients to become involved in their own disease management in conjunction with their medical team. Not only has this document helped our patients and their families and friends but it has reminded us as healthcare professionals of the importance for patients to develop good relationships with their multidisciplinary team.
The issues faced by patients with IBD heightens awareness amongst patients themselves, healthcare professionals and the wider public. This has been vital for me in my role as an IBD Clinical Nurse Specialist.
I would sincerely hope that this will lead to recognition of ulcerative colitis and Crohn’s disease as chronic illnesses. I would like to wish the patients every success and sincerely hope that they achieve their 12 calls to action.
1. IBD does not define us
2. Awareness leads to earlier diagnosis
3. We need to mobilise young people
4. IBD can be invisible
5. Better access to toilet facilities
6. Classification of Croh
n’s and colitis as long-term illnesses
7. Don’t judge us
8. Accepting IBD in our lives
9. We want to be partners with our medical team
10. Freedom to live a normal life
11. Knowledge is power
12. We want strong role models and
Mary Kennedy, IBD Clinical Nurse Specialist, The Adelaide and Meath Hospital Dublin, incorporating the National Children’s Hospital.