Ahead of World Continence Week 2022, Professor Nikki Cotterill talks about her experience of working in partnership with us to identify the needs of people affected by bladder & bowel conditions – and calls for change for those affected.
I have worked in the field of continence research for almost twenty years now and, since the very beginning, I have always been struck by how difficult bladder and bowel leakage is to talk about. And yet we know that being able to talk about these experiences is so vital to helping people who are affected by the conditions to understand that they are definitely not alone, and that things can be done to try to improve symptoms.
Whilst we are breaking taboos in many areas of healthcare, the voices of people who experience bladder and bowel leakage are still struggling to be heard – and this needs to change. For a long time, my work has focussed on how we improve our ways of reaching out to people with these symptoms, so that they do not feel alone and can be helped to improve their symptoms where possible.
We don’t talk about bladder and bowel health nearly enough and this really needs to improve to bring about change and break down the barriers to helping people improve their situation instead of just putting up with it. Dame Deborah James (Bowelbabe) is such an amazing advocate for getting us all to talk about our bowel health, but it is such a shame it takes such a sad situation to shine a light on this area of healthcare, that we are all too embarrassed to speak about.
While incontinence itself isn’t life threatening – a factor which can make it easier to ignore rather than be taken seriously – the daily experience of living with these symptoms can be absolutely devastating and most definitely quality-of-life limiting. The avoidance of exercise, the avoidance of family and friends, and having to always think twice about every situation (due to the fear of a potentially significant and embarrassing accident) are very common impacts.
Such life-limiting conditions are worthy of healthcare discussion and deserve the recognition that improvements could – and should – be made.
The Voices for Change project that I was privileged to be involved in on behalf of the Bladder and Bowel Health Integration Team (BABCON HIT), and in partnership with the West of England Academic Health Science Network and Disruptive Thinking, provided a much-needed opportunity to really hear the voices of people who experience bladder and bowel leakage and what it is like to live with this day in, day out.
The people involved were incredibly humbling, talking so candidly about the difficulties they face and their desire to see things improve for themselves and the many other people also affected. There is a palpable need for progress in many areas of society – smashing the taboo, encouraging conversations, valuing bladder and bowel health and in so doing ensuring society provides for people with difficulties by making services easier to navigate and not limiting our local environments due to lack of toilet facilities. Closely associated with all of this was a strong message around the impact on mental health for people who experience these symptoms and the struggle of constantly managing these symptoms while they remain shrouded in secrecy.
My sincere hope for this report is that it is read and fully considered by all audiences who have the potential to make a difference. Any one of us, or a friend or family member, could experience these symptoms at some point in our lives – and so I am sure we would like to make a difference to improve the quality of life and ease the burden of bladder or bowel leakage for ourselves and our loved ones.
This is a heartfelt plea to decision makers, commissioners and those shaping services to recognise the importance of these so often overlooked symptoms and make a change where significant differences can be realised. Let’s invest in our bladder and bowel services and enable more people to access the right self-help advice and education at an earlier stage of their symptom journey, to make a difference before things decline.
To those with creative and innovative minds, how can we demystify bladder and bowel health and get people talking, reaching out to others in the same situation, and destigmatise these symptoms so that the barrier of secrecy is removed?
For those working clinically or in caring roles in all health and social care areas, are we doing enough to encourage conversations and identify incontinence to help people navigate a path to education, advice and treatments?
We now have such an enhanced focus on our wellbeing in everyday life, which is a refreshing advance in society and very much needed. I challenge this focus, however, to do better in regard to including bladder and bowel health wellbeing. Let’s give bladder and bowel health it’s time to shine.
Posted on June 16, 2022 by Professor Nikki Cotterill, Centre for Health and Clinical Research, UWE Bristol; Bladder and Bowel CONfidence Health Integration Team Director, Bristol Health Partners.
