New website aims to transform the experience of ‘waiting’ for healthcare

The experience of waiting in the health sector – from reception areas in healthcare settings, to our homes in anticipation of professional healthcare support – is the focus of an innovative new website that aims to help people improve the quality of time spent in such situations.

WhatAreYouWaitingFor.org.uk has been developed to enable people in the health and care system to share their experiences and reflections and prompt a more social understanding of what it is to wait in and for healthcare in Britain.

Posters containing QR codes with a banner ‘What Are You Waiting For?’ will be shared with surgeries and hospitals across the country to encourage those in waiting rooms to connect to the site, where they can already engage with scores of stories, images and narratives provided by people in hospices and other care locations. Members of the public will be able to upload their own stories whether as words, images, audio or video – and be able to do it from their phone while they wait.

The site is one of the key outputs of the Waiting Times project, a five-year multi-disciplinary study led by the University of Exeter and Birkbeck, which has looked at different aspects of the human experience of ‘waiting for care’. During that time, researchers from across medical humanities have engaged with hundreds of people and many organisations to gather perspectives and consider a range of issues, from the history of waiting lists to the way that time has effectively become a political issue, and one that needs to be reformed if it is to become more efficient.

“The issue of waiting is one of the defining themes when we talk about healthcare today,” says Dr Michael Flexer, a Research Fellow in the Wellcome Centre (Cultures and Environments of Health) at Exeter. “Much of that discourse is negative, particularly around waiting lists and patients feeling like they are trapped in a system with little prospect of receiving the treatment or support they need. To them, waiting can be a painful, anxious or lost time.

“But waiting is an inevitable and often important element of healthcare and indeed life itself. What we set out to do was provide a platform for these untold stories of waiting and to empower people to bring them to life in their own words.”

Initially, the research team spent a year with three cohorts of people based at a hospice in Devon, engaging in weekly two-hour storytelling sessions. One group created ‘messages in a bottle’ where they wrote to a future that they themselves would not see, while another reflected upon receiving airmail from loved ones in the Armed Services and explored themes of being reunited with them in the afterlife.

With the onset of the pandemic, plans to hold NHS-approved impromptu sessions in actual waiting rooms had to be shelved, so instead the team worked with an East London housing association, hosting online bingo and storytelling sessions.

Dr Flexer said: “Waiting is intrinsic to the enjoyment of bingo. There is tension as you wait for your numbers to be called, but there is certainty that there will be a winner and the wait will be finite. It is when we are uncertain whether we will be released from waiting that it becomes a negative experience.”

The team also worked with young people in London who were accessing mental health services during COVID, as well as a school in Devon for children with visual impairments and complex cognitive needs. Some of that work produced by these groups is showcased on the website alongside clips of people talking about photos and memorabilia, and around 40 written stories.

“We found that as soon as people began to perceive that they had obtained some form of value from the time – whether materially or psychologically – the element of waiting evaporated,” Dr Flexer said. “Like the anticipation of waiting for the curtain to rise in the theatre, for instance, or the expectation that another person – perhaps a skilled professional – will listen, and understand what you need, the time suddenly becomes very much alive and energised.

“This was perhaps best illustrated by one person who had to spend three hours per day, five days per week on a dialysis machine. Rather beautifully, he said that this time could be “heavy”, a “dead time that weighed upon him”. So, he started to write poetry in that period using a tablet and e-pen, and suddenly, the time flew. He had the space to express and explore.”

Funded by a £1.2m grant from the Wellcome Trust, Waiting Times finished earlier this year with a conference in London. The site, however, will remain live for a further five years, and the team will continue to review and upload submissions from the public.

“We hope that through these stories, visitors to the site will recognise something of themselves and their situations,” adds Dr Flexer. “In so doing, it will offer solace and solidarity, and the knowledge that they are not waiting alone.”