Nancy Greig looks back on World IBD Day and what is changing for people who live with IBD across Scotland.
Tuesday 19th May was World IBD Day, a day for everyone affected by Inflammatory Bowel Disease (IBD) to stand up, take action, raise awareness and support the 300,000 people in the UK and millions more worldwide living with Crohn’s Disease and Ulcerative Colitis.
People were urged to mark the event by wearing purple and asking family, friends and colleagues to wear purple and to share stories and photos on social media using the hashtags #worldIBDday and #purplepower.
But why purple and why powerful? In my opinion, as someone who was diagnosed with ulcerative colitis as a young adult and has spent a huge chunk of my working life in and out of hospital, having life altering surgery and managing what can be an extremely isolating and stigmatising condition, those affected often feel hidden and from society and policy makers and in turn, powerless. World IBD Day marks an opportunity to take back that power.
What is IBD?
The two most common forms of Inflammatory Bowel Disease (IBD) are Crohn’s Disease and Ulcerative Colitis (UC). In both of these fluctuating long term conditions parts of the digestive system become sore and inflamed, bringing a host of debilitating symptoms.
Who is affected and how?
About 1 person in 250 in the UK has Ulcerative colitis or Crohn’s Disease and this could be an underestimate, with higher rates in Scotland around 1 in 200. That means that almost every time you walk into a room or in every workplace there will be someone who is directly or indirectly affected by IBD.
Why therefore, when the condition is more prevalent than better known long term conditions such as MS and Parkinson’s disease, do the public and the media persist in referring to IBD as a rare condition? There is little doubt that this is a result of shame and stigma. The reality is that people still do not like toilet talk and see open discussion of these issues as ‘oversharing.’
What is happening in Scotland?
I was delighted to be asked to join the Crohn’s and Colitis UK Scottish IBD project as a patient representative in 2013. The project, part funded by the Scottish Government’s Clinical Priorities Unit with the objective of developing a national strategy for IBD services, aims to advance quality of IBD care through a planned approach with Board, patient and clinical engagement. Two work streams in NHS Highland and NHS Greater Glasgow and Clyde have been developed following a service mapping process which involved people with IBD and the project has been co-produced at all stages with people living with IBD.
For me, the opportunity to be part of this project, which is ensuring continual focus on alignment with the Scottish Government’s 20 20 Vision and Quality Strategy has been personally cathartic as well as an opportunity for professional development.
When I had cause, in 2012 to complain about the failings of my local hospital’s IBD service (which had led to costly unplanned admissions and emergency surgery), I followed the frankly draining and traumatic route of the NHS complaints system. What I found was a complete lack of understanding at a systems level of person centred care and the psycho-social aspects of the condition and worryingly, a set of IBD Quality Standards which lacked ‘teeth’ due to the absence of any managed clinical network for IBD in Scotland. The ‘Taking the Standards Forward in Scotand’ project now provides an opportunity for people like me, once silenced, to wield #purplepower.
The new guide My Crohn`s and Colitis Care identifies the top 10 essentials of a good IBD service, outlining how people with IBD can work in partnership with the health professionals supporting them to manage their condition and care and empowering them with knowledge of how best to manage their condition.
Talking about the reality of IBD
World IBD day has brought the topic of these life limiting conditions into a very public sphere with a range of activity including a major push by Crohn’s and Colitis UK for its supporters to use World IBD Day badges and banners on social media, blogs and websites.
To my mind, social media has been key to the recent drive, from people living with these conditions towards self empowerment and greater visibility. Grassroots campaigns such as #GetYourBellyOut where people posted ‘selfies’ of their stomachs online complete with scars and ostomy bags have been transformational in their capacity to show that IBD and associated surgery can not only be survivable, but a source of pride and that peer support via an online community can be one of the most powerful supports for effective self management.
Likewise the #stoppoobeingtaboo campaign led by blogger Sam Cleasby gained a huge amount of coverage. Sam wrote an open letter after explaining how she was fed up with being judged for using accessible toilets with no ‘visible’ disability.
These developments are extremely encouraging, gradually dragging IBD into the twenty first century from being a dirty secret to an issue that those affected, health professionals and the public can discuss without shame or embarrassment. This is a slow process, but one which I believe is gathering pace. We are still a long way away from it being a ‘sexy’ cause that most people want to donate to and there is still much to be achieved to ensure equality of access to high quality IBD services and a wide range of treatment options, but I know that people with IBD have the power to make that happen.