Written evidence from Name Withheld DEG0190
Supplementary notes to support contributions to online event 22/04/2021
● I was already employed when diagnosed with MS about 22 years ago. At the time I had a line manager who was personally knowledgeable about the condition as he had previously worked closely with someone in a similar situation. As a consequence of this understanding he arranged for appropriate IT, flexibility in working from home occasionally and consideration in work demands. At the time I believe my employer was ahead of the times as this pre-dated some legislation that would eventually help me. Unfortunately that line manager moved on and I was not so lucky with some of his successors. Subsequently, I experienced difficulty due to the lack of knowledge and appreciation of the impact of the condition amongst some managers.
● While my employer and the majority of line managers have been very supportive and keen to make reasonable adjustments for my disability, I also experienced some real challenges at work. Typical examples included one line manager stating "I always seem to inherit problems like you" and another, "I don't agree with people working from home to help them cope with health issues as they will just sit around watching daytime TV all day". With these sort of beliefs in the workplace throughout my time working with MS, albeit from a minority, the challenge of fulfilling an effective role was considerable as it had appeared to some that I was a liability or work-shy, rather than an asset, and being undervalued in this way was stressful and demoralising. With each new line manager I felt I had to constantly re-prove my capability and go beyond the norm to do this, placing more stress on myself to avoid appearing to fall short of expectations. The reason I raise this early experience is because the critical requirement for an understanding amongst organisational leaders and managers that a disabled person should not be seen as a problem but as an opportunity, is still relevant and probably the most important factor for improvement. This would not only improve retention of disabled staff but also improve the success of disabled employees who may want to take advantage of career development opportunities that are open to other employees but who find their symptoms make it difficult for them to pursue on equal terms.
● The introduction of the DDA was a welcome recognition of the need to accommodate disabled staff and this helped formalise some of the ad hoc arrangements with new managers that my employer had kindly implemented years earlier. While it is of considerable value to have an understanding employer, the protection afforded by government legislation cannot be underestimated.
● Over my 33+ years working with MS (I had symptoms over 10 years before formal diagnosis) there had been a gradual change and deterioration in symptoms and increasing difficulty in fulfilling a productive role as activities became more difficult and took longer to complete. Over the years I tried to compensate for this by working longer days and using time during evenings and weekends to catch up. Working longer days, flexible working from home 1 day a week and taking leave days when my symptoms required (to avoid having to take time off sick), initially, enabled me to keep working to the required standard while facing the MS challenge. However, over time there was a limit on how much this could be relied upon to bridge the gap and it became clear to me that alternative adjustments would be required to accommodate variable and dynamic symptoms associated with MS - the problem cannot be seen as something that can be fixed once and for all, it requires flexibility and on-going consideration by managers as conditions evolve.
● During my time as an employee my symptoms of MS had been largely unseen, for me mainly relating to fatigue and cognitive function. Consequently, I experienced a real challenge in the work environment due to the impact of these hidden symptoms that were not obviously apparent to managers and colleagues and also the fact that deterioration was a gradual process, without convenient step-changes that might make a necessary work adjustment more obvious. With hidden disability, colleagues in the organisation naturally expect those affected to be able to work in the same way as themselves/others and performance is naturally judged on the same basis, without allowance for the condition. This is particularly the case for disabilities such as MS where symptoms might include fatigue, cognitive and emotional issues. As people cannot see these, it is understandably hard for them to believe/ appreciate a sometimes hidden and variable condition like MS and its impact on work. Typical responses I experienced, such as - “We all get tired” or “we all forget things”, though well intended, implied that my symptoms were no different to others’ experiences and that they could therefore expect me to perform in the same way as anyone else.
● Symptoms associated with this type of disability can disproportionately impact negatively on individuals in typical work situations, such as during organisational change processes. The unintended impact of these sort of stressful work experiences are hard enough for any member of staff but they can be particularly so for those with disabilities such as MS, where it can cause a significant exacerbation of symptoms. The risk of the disproportionate impact on employees with these types of disability needs to be recognised so that preventive actions can help limit the damage done.
● I was fortunate enough to work in a large organisation that had its own dedicated occupational health team. This specialist unit of professionals worked in support of both the employer and also the individual members of staff and in doing this they operated with a degree of independence that meant they could genuinely represent the interests of the employee. While I recognise that getting the balance right for employer and employee can sometimes be a challenge, done well, this arrangement provided excellent specialist medical and occupational assessment and advice for the employer, as appropriate identifying reasonable adjustments for the benefit of the disabled person.
● I left full time employment 2 years ago due to my symptoms becoming incompatible with my role and I am now part time self employed in two separate roles. The challenges of disability in aspects of my self employment have not been as apparent in my primary part time role because I knew I had to focus my efforts on something I could manage within my limitations and where I was largely in control of work activity. I have been fortunate enough to have been able to invest savings in a small holiday let that can be managed within the constraints of my symptoms.
● However, my secondary role, to apply my professional skills in research and consultancy, has not been as easy to get off the ground. I am sure this is a challenge for anyone, not just someone with a disability, but the challenge is heightened by my condition. I am aware that I need to focus on things I can accommodate and complete in my own time to match symptoms such as fatigue. This constraint is largely incompatible with client requirements and being self-employed there is a challenge to compete for business against a fully functional alternative provider. While I have managed to get occasional short term, part time work, it is not reliable enough as a source of income and I do not have the capability or capacity to identify and secure work from the limited number of clients who would be prepared to offer work contracts under these constraints. And why should I expect them to take a risk on me when alternatives appear on the surface to be more reliable, to be reflecting more normal business practice and being highly polished?
2.1 For employers:
● The most significant barrier is the attitude of those employers or managers that start by viewing disability as a problem or a cost. Clear commitment of senior leadership to the benefits of a truly diverse workforce might provide the catalyst to raise awareness and understanding throughout organisations.
● Provide employees with access to independent occupational health specialists to assess and identify appropriate workplace adjustments that properly accommodate the prevailing requirements of individuals’ disabilities.
● Hidden disability needs greater recognition. Unless disability can be recognised by work colleagues, customers etc it is unfair to expect them to take any limitation into consideration. Cognitive issues typically cannot be seen but can present as if the disabled person is underperforming. There is a challenge to raise the profile of hidden disabilities/symptoms so that some particularly limiting conditions (e.g. fatigue and cognitive function) can be accommodated in the workplace through a broader concept of reasonable adjustment.
● The range of support to disabled people, for example through Access to Work, should also reflect this broader concept of reasonable adjustments. Flexibility in support should be central, because disabilities are diverse, so too should be the support. While schemes such as Access To Work can help with certain work adjustments, they must not be a substitute for adjustments that employers should make themselves, such as providing flexibility in the scale and timing of work demands to help with the variable symptoms of fatigue.
● If performance shortcomings are identified in staff with disabilities, line managers need to have confidence to raise these without fear of appearing to be discriminatory – it is better for all parties to be open about the challenge rather than brush it aside or to contrive solutions to get rid of the ‘problem’ that avoid facing up to the challenge.
● Conditions such as MS by their nature are not static. Symptoms improve and worsen over time and this can be a gradual as well as sudden process. This is a challenge for employers who might want to solve a problem and move on, or apply an inflexible work adjustment. To them it may appear individuals are continually going back to ask for something different but to the educated this would be seen as a reasonable and necessary response to a dynamic condition.
● Benefit might be seen in extending legislation to support people with disabilities in securing employment, retaining employment and in career development as a result of relevant findings from this review. Embodying appropriate adjustments in legislation would overcome the variability and uncertainty in support between employers and between line managers within an organisation.
● If legislation is the ‘stick’ then the ‘carrot’ might be in encouraging employers to provide support and flexibility to disabled staff by making it tax advantageous. Making it beneficial to retain and develop disabled staff in this way would encourage employers to respond to and support the needs of individuals. This could also help in situations where disabilities might deteriorate over time, when an employer may be encouraged to find, with the agreement of the affected individual, an alternative role that is more suitable.
2.2 For the self-employed:
● Encourage contractors (in large organisations ) to place greater emphasis on ‘disability’ in their selection criteria. Social Value is encouraging some to make this sort of recognition in their contracting decisions but disability is one small criterion amongst many others and insufficient to make a big difference to self-employed disabled. Contracted resources could be seen by a contracting organisation as an extension of internal resources and therefore be afforded the same reasonable adjustments as internal resources during contract selection.
● Public sector procurement guidance and rules can unintentionally exclude self-employed generally if the administrative burden is high. However, the impact on self-employed disabled can be greater if reasonable adjustments cannot be accommodated.
● Appropriate support agencies could assist the self-employed disabled to identify work opportunities and assist in securing work. The agencies could help bring together businesses and self-employed disabled to provide greater opportunities to level up the playing field.
April 2021