When Loretto Dempsey first had trouble moving the fingers of her left hand, she brushed it off as a trapped nerve. When walking up stairs became a problem, she put it down to middle-age.
Dempsey went to her doctor, who sent her to a neurologist. She was diagnosed with motor neurone disease (MND) in March of last year, at age 50.
MND is a group of diseases that damages nerves and ultimately weakens the muscles that control movement, speaking, breathing and swallowing. The disease affects one in 50,000 people, and the life expectancy for people with MND is two to five years.
Dempsey told her boss the day after her diagnosis. She had worked at the IT helpdesk at law firm Arthur Cox for 13 years.
“He was very supportive and said I could do as little or as much work as I wanted. It was up to me. They’ve been absolutely brilliant.”
Dempsey’s employer removed a wall in her office and put in a sliding glass door for easy wheelchair access. They installed a lift in her house when she could no longer climb stairs. She has speech recognition software that allows her to use her computer, even though she has limited use of her hands. Every week, a colleague from HR meets her for a coffee to see if they can do anything to help her.
Before she told her boss about the diagnosis, she hoped to keep working but wasn’t sure that would be possible.
“Working has helped me tremendously. It kept me using a computer and my hands to a certain degree. It’s great to be able to meet and talk to people. It also gives my parents a break.
“When someone calls the helpdesk with a problem with their PC, and I help them, I feel like I’m not sick at all. It’s allowed me to continue to be as normal for as long as possible.”
Loretto stays active and is a spokeswoman for the Irish MND Association’s national awareness campaign, leading up to the global awareness day on June 21st. It is Ireland’s primary support organisation for people living with MND, and various events are on this month, including a ball. For more information, see imnda.ie.
Dealing with a serious diagnosis at work is complex, and there's no clear answer about how to approach it, says Naomi Fitzgibbon of the Irish Cancer Society.
“It’s a minefield because it depends on the employer and the relationship they have with the employee. That is different everywhere, depending on where you’re working.”
While employees are not obliged to tell their employers, she says, it is unlikely someone would conceal something so serious as a cancer diagnosis.
“It’s important that your place of work knows you’re undergoing treatment. It’s safer because then the employer can support you and they will understand you might need to take time off,” she says.
Most larger companies will have clear HR policies about sick leave.
“There are some people who are having radiotherapy and go to work everyday. Some people wouldn’t be able to do that. Some patients undergoing [treatment] would have severe fatigue, some would have cognitive impairment that we call ‘chemo brain’. It takes awhile to get back to speed, so it’s important an employer accommodates the person,” she says.
That includes rearranging work schedules so the employee can make it to appointments, meeting regularly to see how they’re doing, explaining the company’s policies and pointing them in the right director for other assistance.
Work can be “the thing that keeps you going. It’s a lifeline for a lot of people”.
The number one tip for employers and employees managing work-related challenges associated with an illness is communication, says Fitzgibbon.
“Employees should feel supported and enabled to talk to their employer. They shouldn’t be afraid of losing their job.”
She says the reality is that sometimes people do lose their jobs, but she does not hear those stories often.
is a specialist employment solicitor. He recommends that employees tell their employers soon after a serious diagnosis. If that happens face-to-face, he encourages employees also to send a letter by email or registered post so there is a record of having notified them.
“It is best practice and always advisable that they give the employer a doctor’s cert setting out exactly what the injury or illness is,” he says. The doctor might list any duties or activities the employee should not perform.
“If you don’t tell your employer, you have absolutely no protection if you’re subsequently dismissed for poor performance, because the employer was not aware.”
After an employee tells their employer, he says, the employer can have the employee medically examined by their own practitioner. Employees are entitled to a copy of the report under data protection legislation.
“There is a duty of care under health and safety, not only to the employee but to everybody else,” he says. This is so the employer can confirm whether there are risks to the employee or others if they continue working. That might mean the employer has to change the nature of the employee’s job, if, for example, it is a physical job that the diagnosis renders them unable to perform.
“It may be that they can’t do that, in which case they might have to put the person on health and safety leave,” he says.
“Certainly an employer is obliged under equality legislation not to discriminate against an employee for an injury or diagnosis that affects the employee. You cannot be fired if you’ve contracted a particular disease or illness,” he says.
Here’s the but: “The reality of matters is, if an employer uses a competent employment lawyer, it is possible to structure matters to terminate employment without much difficulty. Most employment contracts drafted by good employment lawyers would have a provision for dismissal if they are not able to perform their duties,” says Grogan.
He says most unfair dismissal claims are won because fair procedures were not followed and have nothing to do with whether the person should have been dismissed in the first place.
No hard and fast rules
Most employers will make an effort to accommodate sick employees, but there are “no hard and fast rules”, according to
Ian McGowan Smyth
, managing director of HR Ireland.
He says there is a “reasonableness test: if the person can perform their job or an alternative job to a reasonable degree, they should be accommodated”.
But the company’s size can play a role. Larger companies generally have more supports in place, he says, while many SMEs do not. Also, smaller companies might not be able to offer alternative work positions because different positions are not available.
“My general advice to employers is to sit down with the person and try to figure out what’s the best path for both parties,” he says.
Smyth also advises employees to research what supports are available at the company.
“Know and understand what is provided in the company. Is there a sick-pay scheme, or is there an employee assistance programme? There could be medical supports or counselling facilities. Sometimes counsellors can be instrumental in helping to solve problems with employers as well.”