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Disability Narratives

We talked to people about all the forms of support they received and sought. We were particularly interested to hear about people’s experiences with the various departments or institutional forms of support that were available to them. This included their department or college human resources, personnel, and/or IT teams, as well as Occupational Health or their union.

People with different long term conditions or disabilities need different forms of support at different times. Some, like Jan "never even thought of" contacting Human Resources or Occupational Health and had "just kind of got on with it". Others like Devon, said they tried to "work with what is available" or were happy to know human resources and occupational health were there, as John said, "If I did have, for example, a bit of a relapse or something like that, there would be people that I could go to perhaps for advice and support in term of how to manage that".

Some people said they were satisfied with the (often informal) support that had been agreed with their colleagues and managers. As Richard found, "everything seems as if it could be resolved has been resolved at a less formal level". However, for a number of people we spoke to, they did want to seek more formal support and advice. When support was offered or provided it could be understood to be a way the employer valued a member of staff; as Liz remarked when provided with support after a long period of sick leave, "It was like, 'oh, not only do I still have my job [laughs], [but] people want me back!'"

Human resources and personnel (department and university)

Just speaking to someone in HR was in itself found by some to be "really supportive" and HR staff were able to direct some people to other forms of support within the University.

Click for Ruth's interviewRuth explains what HR and personnel might be able to do to support people with long term conditions or a disability.

 

However, it was not always clear for some of the people we spoke to what Human Resources could do to support people with a long term condition or disability. People were unsure what they may be entitled to, what services might be available, or if the support offered was available just for students. The process of accessing institutional support or assistance was even described as a "mishmash" or "unclear" by some who engaged it. For others it was felt that the support they needed was difficult to access or seemingly provided reluctantly. Some found that it took too long to get the help that had been recommended.

Click for Roberta's interviewRoberta found the process of getting a referral to Occupational Health confusing and untimely, causing her condition to worsen.

 

Click for Maeve's interviewThe delays in supplying the equipment Maeve needed left her feeling unsupported and reluctant to ask for help in the future.

 

Some smaller departments were found to struggle with novel or individual requests for support. As Paul reflected, "And if people aren't used to dealing with [unusual requests] they may not be able to have the knowledge to draw on to make the best approach".

One concern was that some people might not approach Human Resources as they may be worried about keeping their job, or are staff who do not really know the system. It was felt that one way to counter this was to promote more openness about discussing disability and the forms of support available. As Jo said, "It would have been helpful if HR had said in my induction, 'Yeah, if you need anything that is maybe disability specific, you should ask for it".

One form of help that was useful to many people was a Display Screen Equipment (DSE) assessment, sometimes referred to as a desk or workspace assessment. This is a risk assessment – often performed by a department's health and safety officer – that looks at keyboards, mouse and trackball, display screens, software, furniture and work environment.

Click for Jo Z's interviewJo Z explains how the departmental health and safety officer helped find her a suitable chair as part of her DSE assessment and that she sees this is an important investment in staff.

 

Although DSE assessments provided a way to get adjustments for some people, others needed more specialist assistance and support.

Click for Susannah's interviewA DSE can only go so far in helping some people, as Susannah explains.

 

Click for Roberta's interviewRoberta did not feel her department knew what else could be done for her back pain and migraines, other than a DSE assessment.

 

Occupational Health

For a number of people we spoke to getting assistance from Occupational Health helped support them in their role. Some reflected on how positive the experience had been. They found that they were able to talk freely and in-depth about any problems or issues they were facing in the workplace, and that the staff there had a good understanding of what could be done to support them.

Click for Verity's interviewVerity explains what happens when you visit Occupational Health.

 

Click for Susannah's interviewSusannah explains how the referral to Occupational Health worked for her, and how their recommendations were put in place.

 

Click for Jo Z's interviewJo Z explains how she was referred to Occupational Health after a period of sick leave and how it was useful to step away.

 

Staff can self-refer to Occupational Health, but if they are referred by their manager then a report can be provided to their department with recommendations and suggested adjustments. People can also go back if their circumstances change.

Click for Jo Z's interviewJo Z explains how Occupational Health liaised with her manager.

 

 

Click for Sue's interviewSue returned to OH when her condition changed and was able to get further support.

 

Being referred to Occupational Health provoked "very mixed feelings" and even apprehension for some people we spoke to. For some this was because what Occupational Health do was not well understood. Although looking at their website helped calm some fears, the process of referral to Occupational Health was not always clear to some people we spoke to. Others said that they felt their managers or department did not see the benefit of getting medical advice. Finally, some people were anxious because of "bad rumours" that associated a referral to Occupational Health with the first part of a formal process to remove them from employment.

Click for Milembe's interviewMilembe was unsure what Occupational Health could do for her, but was pleased with the outcomes.

 

Click for Rachel's interviewRachel found her managers were reluctant to refer her to Occupational Health, even though she believed it would be a good source of support for her mental health problems.

 

Occupational Health were able to recommend a wide range of forms of support, adjustments, strategies, and equipment to help the people we spoke to, including (but not limited to):

  • Giving advice on new strategies to manage a condition. 
  • A desk with adjustable height.
  • A 'SAD' lamp.
  • Counselling.
  • Changes to working patterns, such as flexible working, working-at-home, or going part-time.
  • Referral to other healthcare providers.
  • Suggest IT devices and software.
  • Advice about Access to Work scheme (see Resources).
  • Referral to Staff Disability Advisor.

Click for Liz's interviewLiz was surprised by the amount and forms of support available to her to help her return to work.

 

Click for Mary's interviewMary explains that Occupational Health were able to refer her for further scans.

 

Click for Milembe's interviewBeing referred to Occupational Health relieved Milembe of the guilt of not being able to work when being treated for cancer, and helped her managers better understand her needs.

 


IT support

Being provided with specialist IT software or equipment was a significant source of support for many people. For some people the changes that were needed were small, such as putting a flag on a room booking scheduler to indicate which rooms had lift i.e. step-free, access; or adjusting text editors so they could assisted people with spelling and grammar. For those with dyslexia IT based support was particularly helpful, such as text-to-speech software or changing the screen background from white to a pastel shade. For other people larger changes were needed, which brought profound changes to their working life.

Click for Maria's interviewThe adjustments made to Maria’s computer and display set-up made her feel “normal” and meant she could continue working, despite losing her much of her sight.

 

Click for Liz's interviewLiz describes how her research world will become increasingly digital, starting with voice activated software.

 

Click for Mary's interviewMary applied to Access to Work for technological support to assist her research.

 

There were a few problems that were noted with the introduction of new IT equipment. Some people said they experienced "a lot of back and forth" in getting the software or equipment put in place. Others had delays that aggravated their condition. Once in place it can take some time to learn how to use the new software or equipment, and some people found that the necessary University's IT support staff were not always familiar with their specialist software or equipment to be able to help. One person found that their computer was not able to cope with the new programmes installed on it, causing delays while a new desktop was sourced. Some of these issues were felt to be generational, as younger staff were seen to be more comfortable with asking for and using IT equipment to support their work.

Click for Jo's interviewIT support does not always know what equipment is available so Jo needed to provide information.

 

Click for Ruth's interviewRuth would like the University’s IT Services to support people as they learn new assistive software.

 

Click for Mary's interviewMary was adversely affected by delays in getting the new computer she needed to run her assistive software.

 

 

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