Impact on working
During the interviews we explored several different ways that a long term condition or disability might impact (or not) upon a person’s work. This included the many small ways that people had found to adapt their working practices. We also discussed how some strategies needed wider consideration and involvement of colleagues and managers. For many people we spoke to managing their condition or disability itself took significant amounts of emotional and physical effort, which needed to be accounted for in their life. Sometimes the changes they put in place meant medium or long term shifts in their role, or a change to their working practices, such as going part-time.
Discussions of disability in the workplace often focuses on what people cannot do. However, for many people we spoke to, the adaptations to their working practices were only noticeable to them. For some the changes to the way they worked had taken place over the years, without really realising they were coping strategies and were indistinguishable from 'good working practices' generally. This included keeping good notes, reminders and documentation; maintaining regular working patterns (even if the hours worked are too long and not to be recommended); forward planning and working ahead of deadlines; or, making the most of available work assistive software.
Some people explained that they sought to "keep working", even when in severe pain or significantly debilitated. As Mary said, "I did keep working, [and] in retrospect, I can't believe that I kept on working [laughing], to be honest. Because it was very bad. Even holding a cup of tea was difficult. I was really quite severely impaired by it. But it was easier just to keep going."
Unsurprisingly, working through a debilitating episode of a condition would affect people's work. However, there were strategies that people put in place to avoid too many effects upon their work. Devon described how "there were days where I just [the pain] got too high, and I would have to go [home]". Aware that working when experiencing high levels of pain may affect her accuracy Devon would, at the start of each day, "bring over what I was working on previously, and then look it over. Because I'm fresh in the morning. Look it over, and does this still make sense? "Or was this the afternoon of I've just lost the plot'"? This meant she was "constantly going back and checking", which she recognised was "a bit slower", but having previously lost a large amount of work due to an error when working in pain, this method "still allows me to make progress forwards".
Jan has had full epileptic seizure and absence seizures at work, both bringing short term memory loss; while she can work through an absence seizure she finds it helps to make lots of notes as she goes through her day.
Susannah sought to work as much as she could during a period of chronic migraines; although this affected her productivity, the advice from Disability Adviser helped her put strategies in place to manage her workload.
Common to most workplaces is the tension between the ideal of producing the highest standard of work and the reality of what can be done with the means and time that is available. Managing these expectations of what is reasonable was particularly difficult for many of the people we spoke to. This was not only because of the high expectations each person held for his or her self, but also because of the uncertainty about what their condition or disability might bring to working practices.
Occasionally the tools or techniques introduced to assist people can result in problems with work, particularly while the person learns to incorporate them into everyday practice. As Ruth said when provided with new IT equipment and software, "it'll take me a while to learn that".
Changes to roles
It was occasionally helpful for some people to seek amendments to their role. Some people found these changes helpful, allowing them to focus on what they could do and maximise their contribution to their team.
Not all changes to people's roles went smoothly. Charlotte explained that during a particular bad episode of IBS she needed to take an extended period of sick-leave. She said her manager was sympathetic and asked if she might be able to return with fewer hours and responsibilities. This was a plan she and her manager hoped would allow her to return to work, "after two, three months [when] things would settle down enough. [But] it then was clear that it wasn't settling." At this point Charlotte recalled that her manager "obviously had to look after the interests of the group, which is why he didn't want me back, even part time, or to try to work it out. So that was unfortunate. But you know, I understand it. And he wasn't nasty about it. I think he was just kind of 'It wouldn't work for you to be working from home, we really need somebody here in the office.'" Charlotte reflected, "So it was like okay. At least it's clear, you know, at least it's clear that's not an option, fine."
Having more flexibility to their working patterns was a preferred strategy for managing the balance between work and managing a condition or disability for many of the people we spoke to. This might include adjusting their working hours, providing opportunities to work from home, or reducing the number of hours worked overall. In many cases such flexibility brought greater benefits both to the individual and the team, such as avoiding taking (long-term) sick-leave. Yet it was not always easy to main these new working boundaries once they had been established. Some people experienced pressures to "make-up" time or do extra work outside of the new hours.
While flexible working practices have many advantages, some people also noted how "the line between work and not work can be very, very blurred. I think for a lot of people it's becoming more and more blurred" (Paul). Some people told us that the benefit of the flexible working arrangements they had in place had been reduced by the actions of some colleagues or managers.
Not all roles or teams were open to flexible working arrangements, which left some people feeling frustrated and unsupported.
Having a long term condition or disability often involves more frequent medical appointments. As Rachel explained many specialist NHS clinics operate on certain days, at particular times (often between 9am to 5pm), and, can involve long waits to get appointments. Others explained that they needed regular contact with a range of healthcare professionals, sometimes within the same week. So while the people we spoke to sought to minimise the disruption that their healthcare had on their work, they greatly appreciated any consideration and flexibility that their managers and departments were able to provide.
The people we spoke to have had a range of experiences of sick-leave. For some, just agreeing with their manager that they could take sick-leave provided sufficient reassurance and support. Others noted that the flexible working arrangements they had in place had helped them reduce the amount of sick-leave they were taking to a few days a year. Whereas others had experienced as severe period of ill-health and needed to take more extensive sick-leave (see Resources). For most, the decision to take sick leave involved more than a consideration of their condition. Many knew that their condition could fluctuate without warning, and so would always need consider their future sick-leave needs. And some people explained how they were very aware of the impact their sick-leave had upon their colleagues and their team.
Some of the people we spoke to were provided with 'discretionary leave' or 'disability leave' due to the particular nature of their circumstances.
After discussion with her college, Mary was given ‘retrospective sick leave’ from teaching, helping her catch up with other work; she was also provided with disability leave to train on her new equipment.
Given the international workforce of the University, it was unsurprising to find some different attitudes to sick leave.
Experiences of a long term condition or disability often brought reflections upon what is a good work-life balance and the tensions that restrict this from happening or being maintained. The 'normal' expectations of academic life, such as "publish-or-perish" attitudes, teaching demands, and working long hours were particularly difficult to manage for those people who sought a good work-life balance to maintain their health. Richard explained that at busy and stressful times one of the dangers was that he was not as careful about managing his blood sugars as he needed to be. He reflected that sometimes it seemed in academia, "one should always put work first, and things like health [are] things that interfere with one's glorious career path, is the way some people seem to view it".
The context within which people sought to find a work-life balance, which would allow them to minimise the effects of their condition or disability on their health, was also very important. In many cases, there was a failure to recognise how the benefits of the flexible working arrangements were challenged by pressures to work long hours, to make-up for staffing shortfalls, manage (unreasonably) high expectations, and cope with the precarious nature of temporary contracts.