Posted on January 27, 2023
Voices for Change was a partnership project between the Health Innovation West of England, the Bladder and Bowel Health Integration Team (BABCON HIT) at Bristol Health Partners and Disruptive Thinking, as part of our Create Open Health open innovation programme.
Its purpose was to give a voice to those affected by bladder and bowel conditions, with the long-term aim of initiating positive change for those living with the condition (or caring for someone who does), by suggesting improvements to existing information, services and pathways and guiding thinking around developing or identifying innovative healthcare solutions.
In November 2022, the project’s final output – the Voices for Change report – was presented at the House of Commons at the bi-annual meeting of the All-Party Parliamentary Group (APPG) for Bladder and Bowel Continence Care, at which there was strong consensus and support for the themes and priorities moving forwards.
The challenge
Bladder and bowel conditions are very common in the UK, affecting one in every five of us, and yet it is not a subject openly talked about due to the embarrassment that surrounds the symptoms. This means that many people suffer in silence and do not get the treatment and support they need.
As a long-term health condition, bladder and bowel continence can seriously affect the quality of life for those living with the condition directly or caring for somebody who does – often causing or worsening other health and social problems, with a significant impact on mental health.
Bladder and bowel leakage can affect anyone at any age, but there are also a number of groups of people who are disproportionately affected and underrepresented, which can lead to an increase in health inequalities.
Our approach
Voices for Change was a partnership project between the Health Innovation West of England, BABCON HIT at Bristol Health Partners and Disruptive Thinking.
Its purpose was to give a voice to those living with bladder and bowel conditions (or caring for someone who does) in order to identify need and be able to share suggested improvements with the sector. Its long-term aim is to initiate positive change for those affected.
As with any healthcare challenge, the starting point is always understanding the problem, in order to articulate the need. The first phase of the Voices for Change project was therefore to outreach to and engage with those affected, inviting them to share their experiences with us, in order to gather valuable information and insight into the challenges faced.
We reached out to all those experiencing symptoms, including those from often under-represented groups, through multiple channels – engaging with existing contacts, partners and networks with links to these communities, as well as building new relationships with new relevant groups and networks.
In total, 83 individuals across the West of England region and beyond were recruited to have their voices heard, with contributions gathered between October and December 2021.
In order to give an equitable opportunity to all individuals to contribute in the simplest and most sensitive way, we developed an inclusive and accessible approach. This was achieved through a multi-channel methodology, in which we offered participants three channels through which to participate: group workshops, individual interview and an anonymous survey.
Following the discovery phase, all research outputs were gathered and, using a thematic analysis approach, we grouped similar ideas together in order to organically generate six key themes and priorities: perception, communication, environmental, wider health service, mental health and anxiety and participation. From these themes and priorities, we were able to develop problem statements, which we shared with our network of experts for their reflections and recommendations.
Finally, we pulled the insights, learnings, reflections and recommendations together into a report, highlighting six key action points for the sector to consider:
1. Address the taboo surrounding bladder and bowel leakage
2. Increase conversations around bladder and bowel leakage
3. Prioritisation for bladder and bowel provisions (by commissioners)
4. Increase access to public toilet facilities
5. Improve access to the right treatment / improve service pathways
6. Support the mental wellbeing of those affected.
The final report was published in May 2022 with an intense cross-sector outreach and engagement campaign to disseminate the report’s findings to more than 100 key organisations. This included academic and health research institutions, business incubators, voluntary, community and social enterprise organisations, voluntary sector infrastructure organisations, charities and campaigning organisations, innovation networks, allied health professionals, integrated care systems, care quality commissioners, health and social care commissioners and local authorities.
“Wow, this report is a real tour de force! It will be cited and used up and down the country, and beyond, by all of those advocating for improvements in this area, for a long, long time to come. It truly is an amazing and powerful piece of work. A rare contribution to this field that really enables the voices of people with symptoms to be heard and has such potential to drive real change.”
Nikki Cotterill Professor in Continence Care, UWE
Impacts to date
- Through collaborative working with an academic health research partner, a strong partnership has been formed with the potential to drive future innovation in bladder and bowel health forward.
- The particular focus on under-represented groups and those disproportionately affected supports the sector in its need to address healthcare inequalities.
- In November 2022, the Voices for Change report was presented at the House of Commons at the bi-annual meeting of the All-Party Parliamentary Group (APPG) for Bladder and Bowel Continence Care, at which there was strong consensus and support for the themes and priorities moving forwards. Read more here.
“I am so pleased that the issue of bladder and bowel continence is being talked about and solutions sought to help people affected cope with the issues in a practical sense. This will hopefully help these people to start living full lives again and avoid isolation and shame.”
Participant
“As clinicians we should create opportunities for sensitive conversations about bladder and bowel incontinence. By doing this we can work with our patients and other colleagues to find practical solutions to embarrassing situations, and so enable our patients to face life with greater confidence.”
Alison Tavaré, GP and Clinical Lead at the Health Innovation West of England
Next steps
The insights, learnings and recommendations presented in the Voices for Change report lay the groundwork to initiate positive change for those affected, by suggesting improvements to existing information, services and pathways and guiding thinking around developing or identifying innovative healthcare solutions.
We continue to explore opportunities to support our partners in responding to the report’s recommendations.
Find out more about the Voices for Change project here.
For further information, email us at healthinnowest.innovation@nhs.net.
