Need to know:
- Long-term health conditions and non-visible disabilities are a broad church. It is important to start with the person, not the condition.
- Organisations can only help employees when they know about their condition. To make people feel safe, leaders should be encouraged to be vulnerable and talk about these issues regularly. Training managers so that they are comfortable having these discussions and are informed about the support available is key.
- From employee assistance programmes (EAPs) to critical illness cover, there is a plethora of benefits employers could provide. It is also important to embed flexibility, support and understanding into a corporate culture.
From migraines to cancer, the spectrum of long-term conditions and non-visible disabilities is vast. Jeanette Cook, principal strategic consultant at Aon, says: “A chronic condition is asthma or hayfever, but equally it’s Alzheimer’s, it’s Parkinsons, it’s cancer.”
From multiple sclerosis to long Covid to Crohn’s disease, even people with the same condition or non-visible disability can experience it very differently. Some health issues can also flare up and cause significant disruption in people’s lives, before becoming dormant again.
The important thing is to treat people as individuals and work together to establish what they need. As Barbara Wilson, founder and director at Working With Cancer, explains: “Too often, employers fail to recognise that a one-size-fits-all approach isn’t effective. HR and managers need to adopt a flexible approach, while having clear policies and practices in place.”
Rachel Suff, senior policy adviser at the Chartered Institute of Personnel and Development (CIPD), puts it simply: “Don’t start with the condition. Start with the person.”
There are many ways in which employers can support people with long-term health conditions and non-visible disabilities.
Break the taboo
Bela Gor, director of legal and content at the Business Disability Forum, says: “80% of disabilities are non-visible. People talk about disabilities, and they think about people who are wheelchair users or use a white cane. A very small percentage of people have a visible disability.”
In many workplaces, people with non-visible disabilities or long-term conditions may feel uncomfortable telling their manager. But managers can only support people when they know what the issue is, so how can employers help people to feel safe?
There can be a culture of invincibility in workplaces. Managers and leaders persevering through illness or appearing to have boundless energy can make others wonder, ‘how does he or she do it?’
“Leaders set the tone,” says Suff. “They define the culture. There’s been a lot written about how powerful it is when somebody at the top of the organisation talks openly and frankly about their health issue. That doesn’t mean that every leader who has a health issue should feel mandated to speak, because it still is a personal choice. But if they can, then that really sends a very powerful and genuine, authentic message.”
Employers can embed health and wellbeing across a policy framework and then bring it to life by talking about these issues regularly, adds Suff: “[They have] got to back up [policy] with educating people, having really good content on [their] intranet and then having awareness days, celebrating World Menopause Day, for instance. Send consistent and continuous messages that [employees’] health and wellbeing is important, and [they] will take all issues seriously.”
The language we use is important, says Gor. For example, employers could consider changing some widely used phrases, such as, replacing ‘hidden disability’ with non-visible disability’ or ’long-term health condition’ with ‘long-term condition’. “If we call it hidden, it’s like it’s a secret,” says Gor. We used to say long-term health condition, but then we dropped the health. The reason being: a lot of things aren’t health related. Neurodiversity or neurodivergence is a long-term condition, but it’s not a health condition.”
Employers could also swap ‘disclose’ or ‘declare’ for ‘tell’. It is customary for people to associate the first two words with telling their employer they have a disability, illness or condition. However, these words evoke a shameful secret, a customs declaration or a dramatic announcement, which is not the image employers want to convey when encouraging their people to be more open about their health.
Manager training
Managers need to be aware of the benefits which are available in their organisation and ready to point people in the right direction, whether that is towards an employee assistance programme (EAP) or occupational health, for instance.
“I think that this issue needs to be elevated to the same level of scrutiny and support we give to mental health awareness,” says Aon’s Cook.
Managers should be trained so that they feel comfortable having conversations with team members about these issues. This can often involve asking sensitive questions, with a foundation of knowledge of what is available, to draw out ways in which people can be better supported at work. “When [someone has] a chronic condition, [they] are often the expert in what [they] need,” explains Cook.
Overcoming awkwardness is a big part of training, says Gor. “If a team member says: ‘I have cancer.’ How do you react to that? That’s terrifying to a lot of managers who don’t have that training. So, there is that element of training managers to have those conversations, to know what to say.”
Life is busy and managers could easily forget a one-off training session, so employers should have guidance online about common health issues and the organisation’s policies in areas like flexible working, sickness, absence and any leave which could be available, for managers to refer to, advises Suff.
The CIPD, the Business Disability Forum and many other organisations will provide this type of training. Some large employers are also providing it in-house.
Provide support through benefits
There are plenty of benefits which could prove invaluable to people. “Access to occupational health advice, specialist return-to-work coaching and counselling provided by patient organisations have proven to be very helpful,” says Wilson. ”Benefits like critical illness insurance, which provides a tax-fee lump sum to cover, for example, medical expenses, mortgage and everyday expenses and [group income protection], which offers a partial income replacement, are also extremely valuable. These benefits enable individuals to properly manage their recovery and avoid returning to work too soon.”
Benefits wise, an EAP and occupational health should be an employer’s basic standard offerings which will help them start on their journey, and life assurance and critical illness cover also have a role to play, says Cook. “It’s really important for HR and managers to be able to help an employee along the journey of support that’s available for their organisations.”
Andrea Lewis, director of user experience at online training organisation GoodHabitz, adds: “Support should be straightforward and accessible, not something employees have to prove a need for or search through the fine print to find. Initiatives like [wellbeing] services, flexible scheduling, and mental health resources are most effective when they are proactive and clearly communicated. The more straightforward we make it to access support, the more likely people are to take advantage of it, which is exactly what we, as employers, want to see.”
For employers that want to offer private medical insurance, be aware that most insurers will not cover pre-existing conditions. “Some employers, ourselves included, are looking for ways around that,” says Gor.
The Business Disability Forum has a standard private medical insurance scheme, but also a cashback scheme for people with pre-existing conditions, where people can get treatment up to a certain level, pay for it, and then claim it back.
Benefits are important; so is flexibility, common sense and understanding, Cook adds. “It doesn’t have to cost the world to be a good employer. So having people who are going through it with you, understanding, that is the most important thing. [As an employee] you just want to have a voice. You just want to know: I’m not on my own.”
