Supporting people with long-term disabilities to enter, or re-enter, the labour market is a key priority for policymakers. Here, Dr Hua Wei, Dr Sarah Daniels, and Dr Ruth Wiggans outline new research into what works – and doesn’t work – for those with Long COVID returning to work, how this can inform wider reforms to employment support, and why policies should focus on supporting the individuals through the benefits system and enabling workplaces to provide tailored support.

• Long-term conditions are one of the main factors preventing working age people from staying in employment, with around 2 million people in England and Scotland living with Long COVID (LC).
• Research with those living with LC identified barriers to returning to work and gaining support, as well as the importance of that support once they had it in supporting work and everyday life.
• Proposed reforms to the welfare system to encourage people with long-term conditions to work may bring some benefits, but a tailored approach to the individual is crucial to reduce the risk of exacerbating symptoms.

The announcement of significant and far-reaching changes in the welfare system has triggered discussion about getting people with long-term conditions or disabilities back to work. The proposed measures contain major changes, particularly to the Personal Independence Payments (PIP). These reforms will equalise benefits for those who cannot work and those looking for work; ensure the ‘right to try’ to work without losing benefits; end reassessments for people with the most severe disabilities; deliver £1 billion investment in Jobcentres; enhance the role of work coaches; and expand rights to work from home (WFH).

The main aim of these policy changes is to reduce the benefits bill and economic inactivity, by protecting the most severely disabled and encouraging those who can work to do so. However, the real challenge lies in how these policies will be implemented. People with long-term conditions, such as Chronic Fatigue Syndrome, Long COVID (LC), or mental health conditions have complex needs, as these conditions impact life and work in multiple ways. Symptoms vary across individuals, even for the same condition, and the trajectory of recovery (if possible) can be fluctuating and unpredictable.

What we found

We have recently completed a qualitative study to explore existing support mechanisms for people with Long COVID (PwLC) to return to work, whether the supportive measures had worked for them and what were the main barriers to effective support. LC is characterised by a wide range of symptoms, including fatigue, cognitive dysfunction, respiratory issues, musculoskeletal pain, and other symptoms which last longer than 12 weeks. About 2 million people in England and Scotland (3.3% of the population) were experiencing self-reported LC as of March 2024.

We interviewed 20 PwLC and two managers who had experience in managing employees with LC. While the majority of our interviewees were willing to return to work, tailored support was crucial as returning to work prematurely often led to the exacerbation of symptoms. The main challenges they faced included pressure to return too soon, unrealistic phased return plans, unsuitable work adjustments, the financial impact of reduced hours, and workplaces’ refusal to follow policies or advice from professionals including LC clinics, GPs, or Occupational Health.

One of the key themes that emerged from the interviews was the role of government support such as PIP, Access to Work, and Employment and Support Allowance (ESA). Interviewees discussed the emotional burden and stress of navigating the applications process. Some described it as “mentally exhausting”, while others noted “there are so many hoops to jump through to actually get those benefits”. One interviewee said that “completing the forms is painful and it’s very lengthy and very difficult”, regardless of whether they were successful.

Those who received benefits expressed appreciation for the support this provided, which targeted the debilitating effects of LC they experienced. Interviewees commonly described how LC symptoms such as breathlessness, Postural Tachycardia Syndrome (POTS), or Post-Exertional Malaise (PEM) made it difficult to climb stairs, complete cooking a meal, or bathe and dress without needing to rest in between. Several interviewees also mentioned the cognitive impairment they suffered due to LC had made driving on their own unsafe.

75% of our LC participants were back at work, but their time out of work varied widely. This suggests that most people do return to work when they can, despite the challenges. It also suggests that a one-size-fits-all approach isn’t likely to be effective, as each individual’s experience with LC is unique, with varying symptoms, recovery trajectories, and personal circumstances.

Having LC has led to additional costs in living or privately sought medication or treatment. The impact on individuals’ work ability also caused financial strain due to job loss or reduced working hours. A couple of interviewees mentioned that the benefits helped them with such extra costs and income loss.

Suggestions for policymakers

Supporting people with long-term conditions such as LC to stay in or return to work is important. Both state and workplace support must consider the variability of symptoms, the unpredictability of symptom fluctuation, personal circumstance, and constraints faced by employers such as Small and Medium Enterprises (SMEs). Taking a tailored, individualised, and flexible approach is essential to encouraging people with or recovering from long-term health conditions back into work.

In the context of the proposed reforms, some of the policy changes can be helpful if well implemented. For example, many of our interviewees mentioned being able to WFH or taking desk jobs as being crucial for them to stay in work and work safely. Nevertheless, a few interviewees talked about how the workplace rejected advice from Occupational Health or insisted on work adjustments that were not suitable or even unsafe for them, something attributed to the lack of knowledge and awareness about LC. Participants suggested more information and training for employers could help address this issue, and there is a need for the Department for Work and Pensions to ensure such guidance is developed, distributed, and acted upon.

The £1 billion investment in new work programmes (including Jobcentres reform), investing in work coaches, and ensuring right to WFH for disabled people, holds promise. However, to be truly effective, suitable employment in good quality jobs, adequate support within that employment, and flexibility to accommodate people with long-term health conditions and disabilities is required. Access to occupational health services, which is limited in the UK, especially for smaller companies, is crucial.

There are clear solutions from this research that may help to remove some of the barriers to returning to work for those living with disabilities and health conditions;

• supporting employers directly to make workplaces accessible and inclusive, consistent with their legal responsibilities
• continue providing targeted funds to individuals to pay for workplace adaptations
• encouraging the development and availability of aids, appliances and assistive technology, to reduce costs and facilitate adoption.

While the proposed measures offer some solutions, successful implementation will depend on tailoring support to individual needs. A one-size-fits-all approach is unlikely to be effective, as each person’s experience with their condition can vary greatly. By creating good quality jobs, providing adequate training for employers, increasing access to occupational health services, and offering flexible, personalised support, policymakers can help individuals with long-term conditions return to work safely and sustainably.

This research is funded by The University of Manchester Research Institute (UMRI). The rest of the research team, Dr Anna Coleman, Dr Donna Bramwell, Professor Damien McElvenny, and Professor Martie van Tongeren have also contributed to this article.