Shared Journeys

A few months ago we learned about supported journeys - developed by the British Transport Police, working with train operator staff to accompany people living with dementia and their carers on journeys, helping to increase their confidence to travel. We really liked this concept and were keen to incorporate it into our work somehow. We've also been playing with a number of other ideas recently and wondered if some of the dots might start to connect ...

• We want to develop new types of training for operators that can help staff to better understand the challenges of travelling with dementia.

• We would like to somehow involve people with dementia in developing and delivering that training

• when bringing transport service providers together with people living with dementia we have noticed a two-way learning process - culturing a shared understanding of the challenges that we all face in using or providing transport might help to frame discussions about how services could develop in the future.

• we need to start talking more about why we travel - it's rarely for the sake of it. While travel can be an experience in itself, it almost always leads to an activity. People living with dementia are likely to experience a shrinking world. Visiting destinations and taking part in activities play a big part in motivating us to travel but people are likely to stop - not because they don't want to but because transport becomes too much of a challenge. Highlighting destinations and activities, along with the travel assistance that is available, are all aspects of talking about the importance of travelling well with dementia.

Could we combine the idea of an accompanied journey with developing a chance for everyone involved to learn something about travelling with dementia - and travel to a destination with an activity?

So, when the Edinburgh Festival Theatre announced a dementia-friendly performance of Chitty Chitty Bang Bang we began to wonder….what if we organised an accompanied trip to the theatre?

The great thing about being part of the Life Changes Trust network is the collaboration between its projects and related organisations. We're already working with Dementia Friendly East Lothian and through this we were introduced to the Dementia Friendly Dunbar support group . The Edinburgh Festival Theatre and their Forget Me Not project which was hosting the performance, was hugely supportive and helped with tickets and arrangements.

In the meantime we had been talking with Virgin Trains East Coast at Waverley Station about running some trial workshops about travelling with dementia. We described the shared journey idea and they generously offered to provide travel and support for the Dunbar group and some training time with the station mobility teams. In addition to this, the staff from the Age Scotland Early Stage Dementia project offered to help with providing dementia awareness training during our workshops.

So, the idea of a Shared Journey was born:

• A series of workshops, preparing operator staff by learning about dementia and considering their services from the point of view of travelling with dementia
• a group of people with affected by dementia travelling on an accompanied journey, hopefully learning about assistance available while providing operator staff a chance to experience and discuss the challenges of travelling with dementia directly with them - hopefully putting theory (workshop discussions) into practice (travelling together).
• Ultimately travelling to an activity, providing an experience that is enjoyable as well as useful

So what happened?

During late September and early October I visited the Dunbar group a number of times where we got to know each other, talked about travelling and started to plan for the day - how people will get to Dunbar station? what time we’ll need to meet? what information will people need? And then what will we do at Waverley station? How will we get to the Theatre?  

It turned out that a few people felt that the day might be too long to do the whole trip and so we planned for them to travel to Waverley, tour the station and then return home.

The Workshops

Meanwhile the workshops at Waverley Station were going well. During each one, we started with some dementia facts and figures, thanks to the Age Scotland team. We watched videos including Tommy’s powerful description of taking the bus. We shared what we’ve learned so far in Upstream and, based on what we’d learned and discussed together, we considered the station environment from the point of view of travelling with dementia. We walked the station together, observing different areas including the travel centre, the escalators, ticket barriers, information point and more. Some useful discussions emerged - the lack of signage, too much signage, the noise, the confusing names we give to things, inconsistencies in design and processes, the pace of moving around the station, environmental design, the information that is collected when booking passenger assistance and much more ... 

We talked about potential solutions - quick wins and longer term design issues. We weren’t going to solve anything there and then but we were seeing the service through a new lens and maybe this is a role that Upstream can play. By giving staff some key points to consider, informed by our discussions with people with dementia, backed up by some facts about signs and symptoms, we began to think about dementia-friendly solutions. Some were simply passenger-friendly, some were specific to people living with dementia. Some of them were existing ideas that could be spread further. All of them were informed by a mixture of experience and ideas from both operator staff and people living with dementia.

Finally in each session we talked about the Shared Journey - what we might do at Waverley? what we should show the group? how we would get from Waverley to the theatre and back? 

The journey

So, having planned the day with station staff, Virgin trains, the Festival Theatre, people living with dementia and latterly Hee Haw who would be recording our day, we just needed everything to slot into place. And pretty much everything did...

There was a slight sense of excitement and anticipation as people began to arrive at Dunbar station on the morning of the trip. We caught the Edinburgh train together, accompanied by Michelle from Virgin Trains East Coast, who had helped us to organise the day in so many ways. What struck me immediately was the chat on the train. Maybe it was the excitement of the day or the travelling itself. We gazed at the scenery, spotted places and people and talked of journeys and adventures. One couple had travelled extensively in the past but hadn’t travelled together for a number of years.

At Waverley we were met by passenger assist staff, organising ramps, offering a buggy to get around and helping us to the Virgin Trains lounge. We sat and chatted over coffee - we talked about tickets, considered the the process of booking assistance and discussed the various ways to travel through the station that are quieter and less busy. We walked together to see the assistance call point, the quieter taxi rank with the sheltered pick-up point and the various lifts that make it so much easier to get around a big station.

And then it was off to the theatre and a relaxed lunch in the cafe. Some of the group found a quiet corner for a chat with Michael and Johnny on camera and then we joined the hundreds of people arriving for the dementia-friendly performance of Chitty Chitty Bang Bang!

The feeling of excitement in the auditorium was infectious. With everyone settled into their seats I thought I’d stay until curtain up but caught myself staying for a few minutes… and then a few minutes more…

It was fantastic. I didn’t get to watch it all, but I have it on good authority that it was a wonderful performance. Brighter lighting, lower sound levels, a relaxed attitude to moving around and leaving the auditorium, the option to watch it on the screen in the cafe, wonderfully helpful staff … it all added to a feeling of flexibility and accessibility.

After bumping into the cast on the way out we headed back to the station and then Michelle accompanied us back to Dunbar.

It was a long day but the chat on the train suggested it all went well and people had enjoyed themselves - and had maybe learned with and from each other.

The plan is to get everyone together again in the near future to review how it went - what did we learn? what we could do differently in the future? Perhaps even some discussion around potential changes to services.

We're looking to develop models for experiences like this - participative processes where people affected by dementia not only learn about the assistance that is available but are also active partners in reviewing and redesigning services, helping operators to understand how their services could be different by working directly with passengers. It's a new type of training and we hope that shared journeys might be developed in the future - on trains further afield, but also on other transport modes. 

If you're interested in learning more or getting involved please get in touch.