Many people with multiple sclerosis (MS) who feel able to work are missing out on the right support in the workplace, according to a UK parliamentary report. A year-long review by the All-Party Parliamentary Group (APPG) for MS found that the fluctuating nature of the condition, which affects the nerves in the brain and spinal cord, is a particular barrier to work.
Common symptoms include fatigue, impaired mobility, slowed thinking, numbness and tingling in the arms, face or torso, and eyesight problems, but these vary from person to person and from day to day. Preventable issues, including discrimination, result in many people with MS giving up work earlier than they would choose to, the APPG said.
Launching its recommendations on how to help people with MS remain in, or return to, work, APPG chair Simon Hoare said: "Small, straightforward changes by employers, such as supporting managers to feel confident in talking with employees about their health and offering reasonable adjustments, can help people with MS to stay in work longer."
The Equality Act 2010 protects people with MS in the UK against discrimination from the point of diagnosis. Yet in a survey by the MS Society last autumn, almost a quarter of those with the illness said their employers had treated them badly as a result of their condition. Examples of mistreatment included offensive and humiliating comments, bullying, and accusations of looking too well to have an illness. Respondents also reported losing out on promotions, being forced out of work unfairly and being denied reasonable adjustments to help them do their tasks.
"More than 100,000 people in the UK live with MS and symptoms typically start appearing in our 20s and 30s -- at a critical point in our working lives," says Laura Wetherly, acting policy manager (welfare and employment) at the MS Society. "For people with MS who can work, simple adjustments by supportive employers can make a huge difference.
"Even if an employee can no longer carry out their current role, in some cases redeployment can be a good option."
Writing in the foreword to the APPG's report, Hoare points out that, "staggeringly", up to 80% of people with MS retire within 15 years of diagnosis. Those who are not in work but would like to be lose almost 20 working years on average.
According to guidance for employers published by the MS Society, many of those who require adjustments will need only minor changes to continue working. That support will depend on how the condition affects the individual, the job they do, their abilities and their coping strategies. It cautions managers against making assumptions about what the employee can do or, if they know someone else who has MS, thinking the employee will be affected in the same way. The best approach, it says, is to talk to the employee about the adjustments they need and to maintain that dialogue because their symptoms will come and go.
Disability passports outline agreed changes to avoid employees having to renegotiate adjustments when they move roles
Though it is important to take a personalised approach, the charity does give examples of adjustments that employees with MS have asked for (see "MS adjustments" box). The guidance does not refer to involvement by OSH professionals but, given their experience in making workstation adjustments, altering tasks and working methods to reduce physical strain and stress, and providing personal protective equipment and adapted tools, there is a strong case for them to be part of the process.
According to Helen MacFarlane, principal consultant at the Business Disability Forum, there needs to be a "whole organisation workplace adjustment process", with the employee's line manager taking the lead and input from the HR, health and safety, IT and estates teams. Managers should "take a step back from the label" and look at what the employee can do and how to remove the barriers in their way.
She highlights personal emergency evacuation plans, or PEEPs, as one area where OSH practitioners need to play an active role in assessing risks and then reviewing plans as an individual's MS symptoms progress.
Providing a chair or stool to sit on.
Cutting working hours.
Enabling flexible working or a later start to avoid commuting during busy periods.
Organising a phased return to work.
Providing more rest breaks.
Providing somewhere to take short breaks.
Allowing the employee to work from home.
Moving the individual's workstation away from a source of heat (which exacerbates fatigue) or providing a fan.
Allocating some tasks to another employee.
Monitoring fatigue throughout the day.
Providing alternative employment in the same organisation.
Aiding mobility and reducing strain
Changing the workplace layout to improve accessibility, for example by moving the employee's workstation to a more convenient location or closer to a lavatory.
Providing a car parking space near the workplace entrance.
Providing equipment such as voice recognition software, an adapted keyboard or mouse, a larger computer screen, a telephone headset or a footrest.
Making alterations to tool handles or supplying lighter tools.
Providing personal protective equipment or clothing, such as thermal gloves, boots and hand warmers.
The MS Society's Employer of the Year Award recognises organisations that create supportive working environments for employees with MS. In 2016, Dixons Carphone was highly commended for making adjustments that have enabled one of its employees, Mark Webb, to remain in senior employment after being diagnosed with MS in 2008. Webb explains that, as head of media relations for Dixons Retail, "I had to spend a lot of my time in London or touring journalists around our megastores, which, as you can imagine, became increasingly difficult as the disease began to affect my mobility". The retailer created a new position for him as head of group social media so that Webb can now do most of his work from his desk - though he can walk short distances with a crutch and has a wheelchair and mobility scooter for longer distances. To help to manage his fatigue, he now works four days a week, some of it from home, and takes Fridays off for treatment.
"The business regularly consults me about my special needs and the team has definitely taken what I have told them on board. For example, they have sorted out voice-recognition software for me so I can continue communicating on those days when my hands are not functioning so well. They have also arranged for a disabled toilet to be installed relatively near to my desk," he says.
The arrangement clearly works for both Webb and his employer: in 2015 he was one of 50 people named in the Power Part Time List in recognition of his work launching and managing Dixons Carphone's social media strategy.
The 2016 winner was Quill Pinpoint, a provider of legal accounts software, which was nominated by one of its bookkeepers, Sue Heller. Heller has worked for the company for 24 years and the ways it has accommodated her changing MS symptoms include relocating her to a different building with easier access, providing special taxis to take her to off-site meetings, buying her a wheelchair for office use and assigning colleagues to help her should there be an emergency evacuation.
Help at hand
The UK government's Access to Work scheme can provide funding for support that people with MS need to stay in work, such as special computer equipment (www.gov.uk/access-to-work).
The MS Society website is another useful source of help, offering guidance for employers and downloadable resources (www.mssociety.org.uk/worktoolkit). These include a template for a phased return to work and a form "Understanding your work situation", which is similar to a risk assessment. The employee lists their essential work tasks and considers the demands these place on their mobility, strength, agility, dexterity, co-ordination, cognition and vision. The organisation can use the information as a basis to discuss possible adjustments.
The site also provides a "Workplace adjustment agreement", which records the changes made to the employee's job and sets out that these may be reviewed and amended with the agreement of both parties. The APPG's report highlights the similar idea of "disability passports": these documents outline agreed changes to avoid employees with MS having to explain their condition and renegotiate their adjustments every time they move role or their manager changes.
Organisations that fail to make reasonable adjustments for employees with MS can face claims for uncapped compensation under the Equality Act. In Sharpe v Boots, Karen Sharpe, a senior optical consultant, had a relapse and had to use a walking stick. She worked on the first floor of a Boots Opticians and it took her ten minutes to walk to the downstairs toilet. She resigned after Boots failed to install a first-floor lavatory, even though she had arranged for Access to Work to fund 80% of the cost. A tribunal awarded her £14,000 for constructive dismissal and the company's failure to make adjustments.
Employers pay a heavier price when they lose employees because they fail to help them stay at work. As Sarah Duggan, an HR professional at Quill Pinpoint, told the APPG review, Sue Heller "adds a lot of value to our company. For us, it was not [just] about how we help Sue because she needs it, it's also ... everything she can offer us as an organisation, keeping that within the business, and over the years there have been a lot of ideas [about the] growth of the business that have come from Sue".