Returning to work after cancer takes more than a fit note

When a doctor provides a fit note to a patient, all the employer will see is a confirmation they can return to work. It says very little about what they will be managing once they get there. For employees returning to work following cancer treatment, there can be a large gap between being signed off as fit and being ready in practice to return to the workplace, which is where employer support can often fail. 

Employers have become far more comfortable talking about cancer, and they have had to be with cancer incidence rates in 25 to 49-year-olds in the UK increasing by 22% between the early 1990s and 2018. However, these conversations still tend to stop at the point of diagnosis and restart at the point of return, as though the months in between follow a predictable course. This is almost never the case and when most return-to-work policies assume that recovery is a single, shared experience with a defined end point, it leaves organisations with frameworks that look supportive on paper but do not fit the person in front of them. 

There is no single cancer experience

For employers, the challenge is that a diagnosis alone tells them very little about what an individual’s treatment and recovery will look like in practice. 

As Barbara Wilson, Founder and CEO of Working With Cancer, explains: “There is no single cancer experience. With more than 200 different types of cancer, two people can have the same diagnosis and receive the same treatment, yet experience very different physical and psychological effects. Recovery can vary just as much. It is rarely linear and can be slow, complex and difficult to manage. That is why employers need policies that allow for flexibility, while giving managers the time to understand what each person needs and how best to support them.” 

This matters because workplace policy is usually built around the average: a standard phased return, a fixed number of adjusted hours, a single check-in at the end. Averages are useful for planning capacity, but close to useless for supporting an individual, because the variation between two people with the same diagnosis can be greater than the variation between two different cancers. 

Recovery doesn’t end when treatment does

The point at which an employee finishes active treatment can be one of the most difficult for employers to judge. There may be an expectation that the person is now on a straightforward path back to work, when in reality the effects of treatment can continue to shape what they are able to manage for some time.  

Side effects frequently only begin after active treatment has finished, as some are caused by the medication prescribed rather than by the cancer itself. Menopausal symptoms brought on or worsened by treatment, lymphoedema, peripheral nerve damage from chemotherapy and long-term fatigue can all emerge at exactly the point an employer assumes the most difficult is over.  

Support being concentrated around diagnosis and active treatment, then withdrawn the moment an employee formally returns will create a second and quieter absence risk that employers rarely see coming. 

Policy is not the same as support

Most large employers do have policies in place to care for their employees when they get cancer, however the large majority of these will not be cancer specific policies, which may not be fit for purpose. Only 4% of organisations have a specific cancer policy in place, despite 45% of HR managers feeling that they needed one, according to Working With Cancer research. 

Few employers have worked through what happens when that policy meets someone whose recovery does not follow the shape it assumes. The problems with this tend to exacerbate in three areas: 

• Return-to-work plans are typically written once a fit note arrives, so the conversation begins with a date for commencing normal hours and duties, and works backwards, rather than beginning with a discussion of what the person can realistically manage and discerning a date accordingly. Line managers, almost always the first point of contact, are typically the least equipped part of the process, which leaves employees often briefing their own manager while still recovering.
• Very often they will not want to give their manager the impression that they can’t cope and will put the best spin they can on how well they are recovering.
• Finally, support is limited to the person with the diagnosis, overlooking colleagues and/or family members carrying caring responsibilities alongside their own job.

Working With Cancer research shows that over half of patients have no return-to-work discussion with their employer’s occupational health professional (51%) or with their HR professional (50%). That can often leave the employee to interpret their own capability and the line manager to engage in guesswork. 

What tailored support actually requires

The practical challenge for employers is turning that flexibility into something that works day to day. A return-to-work plan should be treated as a framework rather than a fixed schedule, with room to adjust as an employee’s symptoms, treatment and circumstances change. 

• In practice, that starts with planning the return during treatment rather than after it, so adjustments reflect an individual's symptoms rather than a standard template, and can be revisited as those symptoms change.
• Line managers should also be given training or at least practical guidance on conversations around treatment, absence, phased returns, the Equality Act which sets out an employer’s responsibilities and an employee’s rights, and what to share with the wider team, understanding that the manager must respect confidentiality.
• Personalisation also means access to support that reflects the range of what people are dealing with, from prehabilitation and physical rehabilitation through to psychological support and specialist help for effects that are easily overlooked. It can mean extending that support to carers and loved ones who are also affected by the process.

Cancer is now an established workplace issue and the cost of getting the return wrong is measured in repeated absence, lost experience and people who quietly step away. Handled badly it can lead to employment tribunal claims and poor morale. The effects of this are notable and could cost the company significantly. The employers who handle this well are not those with the most detailed policies, but are the ones who accept that no two recoveries look the same and build flexibility into the process. 

Practical support across the cancer journey

For employers looking to move to practical, personalised support, our Cancer Care Performance Pathway is designed to connect prevention, early detection, nurse-led navigation, treatment support and return-to-work planning across the full cancer journey. Find out more about the Cancer Care Performance Pathway here. 

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About Barbara Wilson, Founder & CEO, Working With Cancer

Barbara is a senior HR professional who launched Working With Cancer as a Social Enterprise in 2014 providing coaching, training and consultancy services to employers, employees, colleagues affected by cancer, carers and health professionals. 

Working With Cancer’s team comprise senior professionals from a wide range of industries who have all experienced cancer personally either as cancer survivors or carers or both and bring that lived experience and insight to their support. 

Barbara is dedicated to improving work and cancer services throughout the UK and Europe and was inspired by her own professional and personal experience of being diagnosed with breast cancer in 2005. Barbara chaired the Government’s ‘Work & Finance’ workstream of the National Cancer Strategy from 2008 to 2010, which developed the first ‘work and cancer’ support tools for cancer survivors, employers and working carers.  She also became one of the architects of the Work and Cancer Program run by Macmillan Cancer Support. 

Find out more about Working With Cancer