Descriptive Summary of project
Everyone needs to go to the toilet but the lack of access to well-designed toilets is a major issue for people with different impairments. This becomes critical when out and about travelling. The private and sensitive nature of the topic means that it is not widely spoken about. The result is that many people are not enabled to enjoy activities that most of us take for granted. This is frustrating, incites anger, sadness and feelings of exclusion. 
A key difficulty with public toilets is that people with different conditions find them hard to use for different reasons. The range of needs makes it tricky for transport planners and providers to meet diverse, and sometimes conflicting, demands. This co-production project followed a research design based on Human Rights. It involved disabled people including people living with dementia and people with profound and complex needs and their family carers. They worked with academics and experts in participatory and community action to tackle the problem of toilets when travelling. 

Key Messages:
•	Many public toilets on common travel routes are not fit for use 
•	The failure to provide adequate public toilets disregards Human Rights and prevents 
	participation as a fellow citizen in everyday life
•	Standards and Regulations have the power to bring about change but often don’t 
	reflect the Real Needs or Everyday Challenges faced by people with impairments 
	who have a need for Safety, Dignity and to not feel Distress.
•	There is substantial overlap in the needs of people with different impairments but 
	there are a few unique requirements for specific disabilities that need attention.

Methods
The underpinning ethos for the study design was drawn from the Human Rights-based model of disability following the United Nations Convention on the Rights of Persons with Disabilities (CRPD)(UN General Assembly, 2006). . The research used a qualitative, co-production design using a photographic method based on the work and ethos of PhotoVoice, a charity that promotes the participatory and ethical use of photography for positive social change (Photovoice, 2007).

Research Aim: To identify the specific needs/key shared priorities that need to be addressed to enable people with dementia and other impairments to use toilet facilities while travelling

Research Questions
1.	What are the specific needs to be addressed to enable people living with dementia and other disabled people to use toilet facilities while travelling and throughout the duration of a journey including transport hubs, service stations, and on different modes of transport?
2.	What are the key enablers and barriers to toilet use whilst travelling? 
3.	What are the top shared priorities that transport policy makers, planners and service providers should focus on for designing accessible, and findable toilets that enable inclusive travel and participation?

The study was organised in three phases, each of which was marked by a ‘Gathering.’  The three ‘Gatherings’ brought together the Co-researchers and project partners at key points in the research. Gathering 1 was the initial coming together and preparation. It involved information sharing, recruitment and co-researcher training for data collection. The twelve co-researchers then collected data on toilets across the country. They took multiple photos and described their experience of finding and using toilets in photo diaries. They also recorded their sensory experiences.
The result is a wealth of data that included over 1,000 photos and 78 descriptive diaries covering 86 individual locations in nine regions across Scotland. We gathered information on travel hubs and toilets on vehicles such as buses and trains and ferries. Many of the photos involved public toilets at places of interest and leisure destinations.
Gathering 2 provided a collective opportunity for all the PCOs to come together and compare their experiences as part of a group narrative.  The analytical process offered a platform for expression of feelings and concerns, and the opportunity to give comprehensive insights into notable aspects of their toilet encounters. The PCOs initially worked in interest specific groups - dementia, learning, and, physical disabilities, and carers of children and adults with PMLD. Each group was supported by a member of the research team and a separate scribe recorded the main discussion points. The sets of themed photographs with quotes were discussed and reviewed within the group who reflected upon and shared their respective experiences. The photographs revealed a lot of barriers, for example, the extreme difficulty that highly patterned walls and floors can cause for someone with sensory and perceptive challenges. It was a huge relief when the PCOs encountered a toilet that was welcoming, had enough space with no clutter, good lighting and colour contrast, easy to use taps and paper towels, to name some of the important factors raised.
The individual groups agreed the top three most important issues emerging from the data and selected the three photos (with quotes) that best signified these. The photos and principal discussion points from each group were then taken forward to the next stage, whole group analysis. The latter involved all the PCOs coming together to debate their key areas of concern and decide the priority themes to take forward as findings. 
The core findings were clustered within three main themes:
•	Many public toilets on travel routes and destinations are not fit for user needs
•	Failure to provide is a disregard for Human Rights because it makes it impossible to participate as a fellow citizen in everyday life
•	Standards and Regulations do not always reflect real needs and everyday challenges
The final part of Gathering 2 involved a conversation on potential formats for knowledge exchange and dissemination. 
The findings were then translated into a range of outputs including a play written and performed by some of the PCOs and a project report (see below for access). The outputs were presented at Gathering 3, our launch event,in June 2019, and comprised: project report; policy brief; set of index cards with PCO biographies and quotes; a series of banners reflecting individual PCO contributions to the project and the project findings; pledge cards; postcards; short video interviews with PCOs; a play written and developed by the PCOs in conjunction with a community-based theatre group. The latter offered a key opportunity for the PCOs to actively inform and develop a key research output and directly represent their experiences to those that make policy decisions.  The play was filmed during the launch and later divided into a series of short videos for posting on the project website and social media (see links below)
From our experience we can state that:
•	We learned a lot from working together: each co-researcher brought individual expertise and knowledge about their needs
•	We discovered: substantial overlap in needs but also identified a few unique requirements for specific disabilities

Video Abstract of ‘A Public Inconvenience’
https://www.youtube.com/watch?v=lVQlJ5ngG-M&list=PLewGw1aBfLCg8EpjdeKn9btceYCwCnepO

Video of the play ‘Incloosivity’ which portrays the findings from the study: A Public Inconvenience in the words and performances of participant co-researchers
https://www.youtube.com/playlist?list=PLewGw1aBfLCg8EpjdeKn9btceYCwCnepO

Project website:

https://toiletsandjourneys.wordpress.com