Written for icon magazine by Ginny Fraser
Originally published in icon Issue 2 2007
Telling someone you’ve got cancer can be tough, but especially so when the person you are telling is your employer. "What will they think of me?" "Will I be able to work and have treatment?" "Can I keep my job?" are the kinds of questions that come up. This article looks at the employment rights of someone with cancer, how best to handle the tricky trio of cancer, money and work and why cancer in the workplace is such a hot topic right now.
Cancer used to be thought of as an old person’s disease, but figures show that in the UK there are approximately 90,000 people of working age diagnosed each year. It seems that there has been a sudden wake-up on the part of the Government and the main cancer agencies about the implications of this and the need for action. One of the key reasons for this interest is the fact that the UK needs people in employment to support the growing pensioner population - the so-called baby boomer "bulge".
One piece of good news for those in employment who get a cancer diagnosis is that there has been a substantial change to the Disability Discrimination Act, which now includes all people with cancer. Details of this are included later in this article. Macmillan and Cancerbackup have both published guides for employers; Investors in People is developing a framework for Health and Well-being at Work; and researchers are responding to the lack of published academic studies on the subject with an increase in studies on the subject.
For example, Dr Ziv Amir of the Macmillan Research Unit at Manchester University published research on experiences of returning to work after cancer which highlighted many of the issues. The research states that there are benefits not only to the state, but to the employer and the employee of facilitating a return to work after a cancer diagnosis.
From the employer point of view it has been shown that "People who have had treatment for cancer are as productive as people who have not had cancer - they take less time off work that other employees and, in general, perform well in the workplace." (Schulz (2002) in American Association of Occupational Health Nurses Journal).
A great benefit to the individual has also been identified. The Amir paper states that "A combination of boredom, isolation and depression characterised people’s experiences and a return to paid employment provided them with a healthy distraction from their cancer and treatment."
icon has long heralded the importance of our emotional, spiritual and mental state in dealing with cancer, so this comes as no surprise to us. Dr Rosy Daniel, formerly director of the Bristol Cancer Help Centre, also agrees. She founded Health Creation, an organisation currently focusing on providing ’Health Creation at Work’ and has a different angle on returning to work. She says, "Employee absence management systems can have quite an aggressive culture of bullying people back into work to save companies money, but the new paradigm is that of active empowerment in the recovery process. Before returning to work people must feel that they are fully recovered from the shock and rigours of treatment, but if they love their work that may well be the best place for them".
She quotes Penny Brohn, one of the founders of the Bristol Centre: "To be well long-term we must commit ourselves to a scenario that REQUIRES us to be alive" and adds, "If work is providing a person with really positive self-esteem and a strong sense of purpose, then returning to work is in itself good holistic medicine. On the other hand, if work has been the source of stress, unhappiness and frustration, then cancer can become the important turning point to choose another occupation. And this is where a really good health mentor comes in, to help individuals truly work out the message of the illness and make healthy life affirming choices for themselves."
Working during treatment is another matter, as the ability to do so varies hugely dependent on the type of treatment undertaken. One person’s response to chemotherapy may be vastly different to another’s. Some people find it is simply impossible to work while others sail through with barely a side-effect.
Interestingly, the research has shown that although for many people their goal is surviving the cancer and returning to work, the majority of those interviewed then re-evaluated their work-life balance and "attached much less importance to paid work compared to their family life". The following quote sums up a widely-held sentiment:
"I think cancer affects your views about everything and obviously work is a big part of it. It sort of puts things in perspective and you don’t think things are as important. I don’t get as stressed about things at work. You know things happen and you think, well, there are worst things that can happen . I think it gives you the attitude that you enjoy everyday and I would never worry about work or let it dominate me now."
The Macmillan-funded research on returning to work also quotes a review of the literature which found that, in addition to the importance of returning to work for individual, the following issues stood out:
- Financial pressures rather than medical advice are the main factors which determine the time and the manner of the return to work.
- The kind of cancer you have and the treatment you take are significant in determining ability to return to work. People with blood, lymphatic, central nervous system and head and neck cancers experience a more difficult return to work.
Telling People At Work
Often at the time of the initial diagnosis you might have no idea about what lies ahead in terms of treatment, how it will affect you, how able you might feel to continue working. So it can be hard to know what to say, and who to talk to. All kinds of issues get triggered, such as feeling guilty about letting your colleagues or employer down with absences; fear about job security or promotion prospects all on top of the anxieties that are part of the territory with a cancer diagnosis.
Often there is also the fear of being seen as ill or incapable, of being somehow not up to the job. The fact is that some people still view a cancer diagnosis as a death sentence and start talking in hushed tones when you are around and muttering about the "big C". Telling people at work means having to deal with all of their pre-conceptions about cancer as well as their upset and concern for you. The sense of being seen differently by colleagues can be really off-putting and create hesitancy about being open.
Deciding who to tell also needs thinking about. Sometimes people choose to tell a line manager or someone in HR rather than tell all their colleagues, so the question of confidentiality is important. Generally a diagnosis doesn’t just come out of the blue - there will have been time off for tests, for scans and perhaps some months of general ill-health prior to the actual diagnosis. But even when there might be a suspicion amongst colleagues, hearing the news can still be shocking.
It’s good to bear in mind that if people’s reactions are abrupt or unhelpful it is most likely to be out of panic and not knowing what to say rather than lack of care. The Macmillan package for employers includes a DVD with a number of workplace scenarios with examples of employers kicking themselves for their insensitivity that came about simply through embarrassment and ignorance.
Openness does seem to the best policy if you can do it. The earlier you put your employer in the picture the earlier they can start to look at how to support you. That support is not only really important in terms of facilitating a way of working that suits both you and your employer; it is also your right under the law. Open communication can also help teams to pull together to cover absences and work out how to share workload while you are undergoing treatment.
What Are My Rights?
In 2005 all people with cancer were included in the remit for the Disability Discrimination Act and given new legal protection from the point of first diagnosis of their cancer and additionally small businesses with less than 15 employees - which were previously exempt - are now subject to the DDA.
According to the Act, your employer needs to make certain "reasonable" adjustments to your working hours and practices to help you if you want to keep working. If they fail to do this, you could take your case to a tribunal.
Some possible adjustments could include:
- Allowing time off for medical appointments without it having to be taken off holiday allowance or sick pay
- Creating more flexibility in working hours
- Allowing extra breaks to cope with tiredness
- Changing a job description to take away tasks that might be physically challenging - either temporarily or permanently (depending on employee’s preference)
- Allowing some / all work to be done from home
- Providing somewhere private for rests or taking medications
- Assistance with a phased return to work, whereby hours are gradually increased over a period of time
- Moving the place where the employee works e.g. to a ground floor if they have difficulty climbing stairs
The Act says that the employer will be discriminating if a necessary adjustment isn’t made. However, the duty is only to do what is reasonable, and in certain circumstances the employer might be able to refuse to do this because it just isn’t reasonable, based on cost, effectiveness and practicality.
The Act now gives protection in the following areas:
- in the recruitment process
- in your terms and conditions of employment
- in chances for promotion, transfer, training or other benefits
- dismissal
- being unfairly treated in comparison with other workers
- harassment or victimisation (for example, about hair loss)
In terms of dismissal, the Act also provides some protection. If you really can no longer do your job then your employer can only dismiss you after a thorough investigation of all the possible reasonable adjustments that could be made.
On working out the cost of cancer, sick pay is something to consider. Anyone earning 84 per week or more is eligible for Statutory Sick Pay (SSP). There is a basic weekly rate, but your employer may decide to pay more than that.
The entitlement is due if you are off sick for more than four days and continues until you either return to work (or leave), or up until the end of a 28 week period. If you return to work and then require a further period of time off sick, the period back at work needs to be at least 8 weeks.
If you are not able to return to work after the 28 week period your employer needs to issue an SSP1 form, which certifies that you have been in receipt of SSP. This can then be used to obtain Incapacity Benefit through the local Job Centre. From 2008 this will be replaced by a new "Employment and Support Allowance" consisting of higher payments for the most severely ill claimants and back to work plans for those capable of some kind of employment. If you need help with personal care while you are off work, you may also be eligible for Disability Living Allowance.
In terms of achieving work-life balance, a cancer diagnosis provides a huge challenge - balancing the need to take care of your health and reduce stress with the stimulation, distraction and connection that work can provide as well as bringing in the income most of us need. Support and information are the keys to achieving this balance - all of which are available from the sources listed below.