Shaping better policy through real life experiences of work and health

8.2 million people in the UK live with a work-limiting health condition, and each year around 300,000 individuals leave the workforce because of such conditions. All eyes are on this growing challenge, with almost daily media attention on the number of people taking sick days or not working due to ill health.

Between the Pathways to Work Green Paper and the Mayfield review, the government is considering welfare reforms and employer action to reduce the number of people unable to work due to their health or disability. For all the efforts to dissect the problem using data, effective solutions will require real understanding of people's direct experience of health and work. At the Health Foundation, we’re trying to keep this front and centre throughout.

As we know, work is about more than just an income. It can give people purpose, routine, social connection and a sense of achievement. When it goes well, it supports health, wellbeing and independence. But for people with a health condition or disability, this is not always the case.

Our Commission for Healthier Working Lives recently set out the need for a new approach to work and health. As part of this, we heard from many people about how they often face barriers to staying in or finding work. These barriers can vary from place to place, between types of work and how people experience their health condition or disability. 

Grounding the numbers in people’s experience 

We wanted to listen directly to the voices of the people behind the numbers. As part of our public involvement programme, we heard from people across the UK about what it is like to work with a health condition or disability and their experience of finding and accessing support. We also heard their ideas about what could help. We held workshops with charities who represent disabled people and others with health conditions, as well as speaking directly with individuals. And we worked with ClearView Research who engaged communities through in-person workshops, video diaries and peer research. 

Throughout all this work, I have seen how listening to people’s experiences has grounded the Commission’s understanding of work and health challenges. For example, Bobbie described the challenge of having 30 hospital appointments in 1 year while working. Jane, because of her physical health condition and inadequate adjustments, faced mental health challenges and had to retire on health grounds. Including these experiences in our work created empathy and helped us understand the complex reality of people’s lives. This naturally results in a more meaningful approach to developing policy recommendations that reflect people’s actual needs. 

What people told us about their experiences

We heard some examples of caring employers and good support from health professionals. Louise* told us:

But sadly many people described difficulties navigating rigid systems, fragmented services and facing stigma – both from other and internalised stigma.

Systems are not designed to work together 

People rarely said directly, ‘I need to adapt or negotiate’, but their stories showed how these skills became part of their journey. Individuals were constantly adapting to the changing nature of their health and the needs that came with it. Some were able to stay in work with their employer’s help, while others managed on their own or with support from family. This often happened while navigating systems that are not built to work together.

We heard about long delays in accessing support, inflexible policies, services working in isolation and a focus on diagnosis – rather than the whole person. These factors often disempowered people, taking away their agency and ability to cope with changes in their lives. Edward summed up these challenges:

Social perceptions and workplace culture

Despite increasing awareness of health conditions, many people spoke of struggles with workplace culture. They talked about the need to ‘fit in’, feeling pressure to play down health issues and avoid discussing mental health for fear of being judged. Kwame said:

Stigma and social perceptions can create an environment where people feel unsupported. This can contribute to worsening health, disengagement and – for some – leaving work altogether. It can also hold back conversations about what helps people stay in their roles and feel valued.

Shaping recommendations through people's insights 

A common theme in people’s stories was the value of timely, joined-up support. That’s why we’ve recommended a model of support where a local caseworker steps in early, advises employers and employees and arranges the right help so that people can stay in work. Good case management looks beyond the presenting health issue, taking in the wider obstacles people face, and prioritises getting them the help they need. All this is to help avoid experiences like David’s, who said:

To make a real difference, policies must provide practical, workable solutions. Hearing from both employers and employees showed how important it is to understand what actually works in different settings. Charles said:

To make the world of work truly inclusive, we need to understand what enables people to stay in work and thrive in different contexts. This means involving people with lived experience, sharing these insights and working across different sectors and employers. This will help to make work more accessible for all and consistently support good health.

*We've changed people's names to protect their identities.