Patient and public involvement (PPI) to initiate positive change for people affected by bladder and bowel conditions

In this blog by Project Support Officer, Cathy Geary, we hear about the public engagement work the West of England AHSN’s Innovation and Growth team has been doing to gather insight into bladder and bowel continence.

The Voices for Change bladder and bowel continence project is part of the West of England AHSN’s Create Open Health programme, which we are running in partnership with Bristol Health Partner’s Bladder and Bowel Confidence Health Integration Team (BABCON HIT).

One in five people in the UK live with bladder and bowel conditions, which is huge. It affects people of all ages, across all life stages and is a challenging and sometimes ignored, somewhat taboo, health issue.

This was one of my first projects at the AHSN and one that I feel passionately about, due to personal experience. Personally, my problems started after the difficult forceps delivery of my first child. Continence was something I had previously taken for granted, when suddenly I began experiencing symptoms. I was exhausted and had a new born to look after. I was lucky that things did improve for me (with the support of an app that provides pelvic floor muscle exercise programmes), but this piece of work has given me such an insight into how difficult life can be for people living with these conditions.

One of the aspects that I have most enjoyed has been working in partnership with Amy and Yiuwin from Disruptive Thinking Ltd and Nikki from BABCON and also members of the team at the AHSN.  It was clear from the start that we all feel passionately about this cause and want to make positive changes for those affected.

Our objective was to enable people with lived experience of bladder and bowel conditions to share their experiences with us, in order to generate insights which can be used to inspire new innovations and future awareness campaigns. Involving people with lived experience is known as patient and public involvement (PPI) and is an important aspect of health care – but is not always easy to achieve, often because it can be hard to reach certain groups of the population.

Throughout the process, the team worked with a friendly rapport to solve challenges, apportion tasks and give feedback with professionalism and gentle humour; online team meetings were a pleasure to attend and minute. Sadly, real life meetings weren’t possible due to the Covid situation.

We began by planning a series of online group sessions/workshops and the challenge was to promote these to a range of groups of people who commonly suffer incontinence conditions.  It was really rewarding when we started to see people registering to attend the sessions, as this showed that there is an appetite to share and be heard.

The workshops themselves were hugely inspiring.  My role was to listen and take notes, and hearing participants share their stories so bravely – often with candid humour – was very moving.  In the first online session, we had nine attendees of all different ages who, as they spoke, supported each other. Knowing that other people have also been through something that is often so taboo clearly provides some comfort.  We noticed how certain themes were emerging of how difficult everyday life is for people living with incontinence. Travelling, working, the lack of clean public toilets, dealing with the stigma and frustrations at times trying to navigate the health system. Some of the commonly used language and stereotypes are also unhelpful. I myself have felt the competitive pressure in society to ‘toilet train’ a child who wasn’t ready before they started nursery.  There are many children who take longer to gain full control and it is very difficult for parents and schools to deal with this, which can lead to longer term challenges.  The effect of the condition on mental health was a common thread throughout the interviews.

After the third session, we had a rich picture of stories but still felt that voices of certain groups were missing, and so we added two further methods of engagement to our approach; a survey was devised, and one-to-one sessions were offered. The perspectives from this phase further added to the picture and provided new insights.

The project team is now working on the key learnings report, and I am excited to see what it will look like and what people will think of it. My hope is that this work will provide useful inspiration to solve some of the challenges in this area and will get people talking about this important matter.

To find out more about this project, and stay tuned for its soon-to-be-published key learnings report, visit the Create Open Health Voices for Change web page, here.

Additional Support

For information, signposting and confidential support, we would also like to highlight the national helplines provided by:

In addition, BABCON recently launched a free app which provides education and advice to help people to understand their symptoms and try out things that might help. The CONfidence app provides practical help at your fingertips. It brings together trusted and reliable information, informed by people with lived experience and national experts providing specialist bladder and bowel care.

You can find out more about the app and download it to your iPhone or Android phone here.

The Voices for Change project is the second run of the Create Open Health Programme. The programme first launched in 2019 and focused on building resilience in young people and supporting positive mental health. To read more about the first project, visit its web page here.



Posted on March 29, 2022 by Cathy Geary, Project Support Officer, West of England AHSN

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