Improvements in diagnosis and treatment for cancer mean more people than ever are being treated successfully and going into remission. There are now two million people in the UK living with cancer; approximately 728,000 of them are of working age.1
Not everyone diagnosed with cancer will want, or be able to, remain in or return to work. However, research has found that many people attach a very strong importance to work after a cancer diagnosis.2,3 For some, there will be financial pressures to return to a regular income. Macmillan Cancer Support has found that 91% of cancer patients’ households suffer loss of income and/or increased costs as a direct result of cancer.4
Work also represents a return to normality after the impact of a cancer diagnosis. There is a strong evidence base to show that good work is good for physical and mental health and wellbeing.5
Road back to work
Staying at work during treatment, or returning after treatment, is not necessarily straightforward. One study of cancer patients who were in employment at point of diagnosis and who were judged by their GPs as having a reasonable chance of returning to work, found only a quarter of them worked during treatment.6
People with cancer have told us that it impacts on their ability to work in three ways: physiologically, emotionally and practically.
The physiological effects of cancer and its treatment are most directly associated with difficulty working. Fatigue in particular impacts on their ability to work (73% of cancer survivors deal with extreme tiredness following treatment).7 Other significant effects that impact on survivors’ ability to work include pain, reduced cognitive functioning, and reduced freedom of movement. Some side effects, termed ‘late-effects’, do not arise for months, years, or even decades after treatment. Emotional effects such as depression (48% of cancer survivors experience depression),8 diminished confidence, and guilt about reduced ability are additional barriers to work. Practical difficulties such as needing to take time off for treatment or check-ups can also make working life difficult.
As a result, many cancer survivors do not return to work. A Macmillan survey found that 36% of cancer survivors who were in employment when diagnosed had to give up work completely as a result of their diagnosis, and a further 21% had to change their roles.9 Many survivors initially return to work, but later leave or change jobs due to ongoing or subsequent problems. One study indicated that of the survivors who returned to work in the first year after treatment, 11% subsequently left due to cancer-related issues.10 The road back to work could be made much easier for these cancer survivors, but three main barriers currently exist:
- a lack of information and advice from health professionals on working during, or returning to, work after cancer treatment
- a lack of vocational rehabilitation services available to help people with cancer return to work
- a lack of support for people with cancer from their employers, despite cancer being a recognised disability under the Disability Discrimination Act (DDA).
In recent years there has been an increased government focus on supporting people with chronic illness back to work. A 2005 Green Paper11 driving this agenda was followed by Dame Carol Black’s review of the health of Britain’s working-age population in 2008.12 The resulting initiatives have focused on cardiovascular, musculoskeletal or mental health conditions, or generic long-term conditions. In 2007, the Cancer Reform Strategy recommended that patients be given information and advice on returning to work. Following this, the National Cancer Survivorship (NCSI) was established to develop new models of care for people who have completed cancer treatment. One of the NCSI workstreams is looking specifically at work and finance issues, and is developing and testing a range of tools, resources and interventions aimed at helping cancer patients get back to work.
Time to return?
According to a Macmillan survey of people living with cancer, 80% of those in work or education when diagnosed reported they were not told about the impact their illness might have on their work or education.13 Another UK study commissioned by Macmillan found that one of the barriers to returning to work was the lack of medical advice from cancer specialists and general practitioners regarding the appropriate time to get back to work. ‘Go back when you feel ready’ was the typical medical advice given, but this was not felt to be sufficient.14 The kind of information that can be more useful for people with cancer includes:
- how their cancer or its treatment will affect their ability to work
- what they can do to manage or accommodate their symptoms
- when they might be ready to go back to work
- what financial assistance they can get while they are off work
- how returning to work may affect any benefits they are on
- their rights under the DDA.
The introduction of Information Prescriptions will provide an ideal opportunity for health professionals to offer patients this information, or signpost them to where they can get it. The new fit note will also prompt doctors to have a conversation with patients about what support they might need in order to return to work. Under the NCSI, Macmillan is also developing a tool to help health professionals have initial conversations with patients about work and identify needs.
Vocational rehabilitation means everything that helps someone with a health problem remain in or return to work. In the context of cancer, this includes information, services such as physiotherapy or counselling, self-management programmes to deal with pain or fatigue, retraining, employee advocacy, and workplace adjustments.
The problem is that many of these services are not routinely available to people with cancer.15
Several possible avenues of support do not focus on vocational rehabilitation. NHS cancer services concentrate on supporting people during treatment, not on helping them return to work. NHS rehabilitation professionals, such as occupational therapists, do not have the capacity to do more than hospital discharge planning.
Jobcentre Plus offers work-focused programmes. However, these are only available to benefit claimants and are focused on the long-term sick. This excludes people with cancer who are currently in work and need assistance with job retention. Additionally, a Macmillan study of the Department for Work and Pensions’ Pathways to Work programme has found that aspects of support, such as the Condition Management Programme, have proved insufficiently tailored to the specific needs of people with cancer. Significantly, neither the Condition Management Programme nor the Pathways to Work personal adviser support extends to when people are back at work, which can be the point at which many problems arise.16
Occupational health (OH) services are ideally placed to help support cancer survivors returning to work. However, such services are not available to all employees. Survey data indicates that while 98% of public sector staff have access to an OH professional through their employer, only 36% of private sector employees do.17 A free Health for Work advice line for small and medium-sized enterprises is now available.18 But not all OH professionals will be able to provide advice on cancer. A Macmillan survey of OH doctors found that nearly half (48%) felt their training had not equipped them to support employees with cancer. Two-thirds felt that doctors did not understand the role of OH or what information employers required, and 45% felt that line managers referred employees with cancer too late for OH advice to be most effective.19
In an effort to address the lack of vocational rehabilitation services for people with cancer, Macmillan is piloting a new model of vocational rehabilitation. This is part of the NCSI programme of testing new approaches to cancer aftercare. Seven pilot sites around England are testing the model, which uses a case management approach to provide information, signposting, self-management programmes, and specialist services specifically to help people with cancer remain in or return to work. The pilots will aim to intervene early, and support cancer survivors to remain in or return to their existing jobs.
A similar intervention for people with Multiple Sclerosis (MS) was found to have a marked impact on work status and wellbeing, and was relatively low cost.20 Similar rehabilitation services in Australia were found to be very cost effective, with financial returns to the individual and state being considerably higher than the cost of the service.21
Macmillan research has found that a good relationship with an employer and a phased return to work are two important predictors of a successful adjustment back to work.22
Examples of good practice by employers include agreeing a return-to-work plan jointly with an employee, and considering flexible working. Cancer can be unpredictable, so it is important that plans are flexible and allow for change. Other good practice examples an employer can consider include maintaining contact with an employee during their sick leave (though taking care not to let this come across as pressure to return to work too soon); allocating some work to another employee; making adjustments to work buildings; and providing training or retraining for someone who can no longer do their job. It is important that employers do not overestimate the risk of someone with cancer returning to work, nor underestimate their potential for continued achievement and progression.
Amendments to the DDA came into effect in 2005 extending discrimination protection to people with cancer. These employer obligations will remain when the new Equality Act comes into force in October,23 bringing together various discrimination laws, including the DDA.
Research in 2007 found that while 80% of employers were aware of the DDA, only 20% knew that cancer was covered by it.24 Research has found that 73% of employers do not have a formal policy in place for managing staff with cancer.25 Also, 50% of patients are not informed by employers of their statutory rights, and less than half are offered flexible working arrangements.26 In addition, people with other chronic conditions are more successful in securing workplace adjustments than cancer survivors.27
Many employers want to provide better support to employees with cancer, but don’t know how. A Macmillan survey found 68% of line managers say they need more information and guidance on cancer.28
Macmillan has produced a toolkit of resources to help provide information and support to people affected by cancer in the workplace. This includes resources for organisations, managers, employees and self-employed people.29 Another NCSI project is a learning and development programme Macmillan is jointly developing with TUC Unionlearn, to assist trade union representatives in supporting employees with cancer.
In a Macmillan survey of people living with cancer, 34% of those in work or education when diagnosed had seen their salary decrease as a result of their illness.30 Also, as already highlighted, many cancer survivors return to work but do not remain, or leave work altogether.
The costs to the economy of cancer survivors not being well enough to remain in or return to work are five-fold: emergency hospital admissions and GP visits for symptoms that are not well controlled; payment of incapacity benefits (in 2008, 40,000 people with cancer were receiving incapacity benefits);31 lost productivity; loss of income tax paid; and the cost to, and lost productivity of, carers.
Research by think-tank Policy Exchange estimates losses in productivity alone from cancer survivors being unable to undertake paid or unpaid work equated to £5.49bn in 2008.32 Economic analysis by Monitor for Macmillan has estimated that helping just 5.5% of breast cancer survivors to remain in work could save the economy £30m every year in decreased benefits and transport subsidies paid to patients, and an increase in income tax paid by patients.33 Macmillan believes the economic benefit could run into millions more if all cancer patients who were able, were helped to return to and remain in work.
When the economic benefits to employees, employers and the economy are added to the health and wellbeing benefits for people with cancer, there is an undeniable argument for providing adequate support for people with cancer to return to, or remain in, work.
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Katharine McDonald is policy analyst at Macmillan Cancer Support.
In addition to providing resources on supporting people affected by cancer in the workplace, Macmillan Cancer Support offers training and support on cancer for health and social care professionals. Visit its Learn Zone34 to find out more.
- 1 J Maddams, D Brewster, A Gavin, J Steward, J Elliott, M Utley and H Møller (2009), Cancer prevalence in the United Kingdom: estimates for 2008, British Journal of Cancer, Table 4. The first two columns summed gives cancer prevalence for those aged 0-64 as at 31 Dec 2008. To get an estimate of those of working age we subtracted the 16,000 people estimated to be under 18 at that time (http://library.ncin.org.uk/docs/080714-TCR-UK_prevalence.pdf).
- 2 Spelten E, Spragers M and Verbeek J, (2002), ‘Factors reported to influence the return to work of cancer survivors: a literature review’, Psycho-Oncology 11:124-131.
- 3 Amiz Z, Neary D and Luker KA, (2008) ‘Cancer Survivors’ views of work three years post-diagnosis – A UK Perspective’ , European Journal of Oncology Nursing, 12(3):190-197.
- 4 Macmillan Cancer Support (2006). Cancer costs.
- 5 Gordon Waddell, A Kim Burton, Is Work Good for Your Health and Wellbeing? 2006.
- 6 Ziv Amir, Tony Moran, Luke Walsh, Robert Iddenden & Karen Luker, ‘Return to paid work after cancer: A British experience’, Journal of Cancer Survivorship, (2007) 1:129-136.
- 7 Macmillan conducted an online survey during February 2010 of 1,019 people with cancer. 314 (31%) of these people have active cancer and the rest are in remission.
- 8 Macmillan conducted an online survey during February 2010 of 1,019 people with cancer. 314 (31%) of these people have active cancer and the rest are in remission.
- 9 Macmillan conducted an online survey during February 2010 of 1,019 people with cancer. 314 (31%) of these people have active cancer and the rest are in remission.
- 10 Pamela Farley Short, Joseph J. Vasey, Kaan Tunceli. Employment Pathways in a Large Cohort of Adult Cancer Survivors. Cancer. Volume 103, Issue 6 (p1292-1301).
- 11 Department for Work and Pensions, Department of Health, Health and Safety Executive, Health, work and wellbeing – caring for our future, October 2005.
- 12 Dame Carol Black’s Review of the health of Britain’s working-age population: Working for a Healthier Tomorrow, March 2008.
- 13 Macmillan Online Survey, February 2010. 1,019 people with cancer from across the UK were surveyed. 314 (31%) of these people have active cancer and the rest are in remission.
- 14 Amir Z, Neary D and Luker KA (2008) ‘Cancer Survivors’ views of work three years post-diagnosis – A UK Perspective’, European Journal of Oncology Nursing, 12(3):190-197.
- 15 Returning to Work: Cancer and vocational rehabilitation, Macmillan Cancer Support, February 2008.
- 16 Finding a Clearer Path: Evaluation of the Pathways to Work Programme for people living with cancer, produced for Macmillan Cancer Support by Matrix Insight, March 2010.
- 17 Health and Safety Executive. Occupational Health Advisory Committee report and recommendations on improving access to occupational health support, 2000. Available at www.hse.gov.uk/aboutus/meetings/iacs/ohac/access.htm#7 accessed May 2010.
- 18 http://www.health4work.nhs.uk/ 0800 0 77 88 44.
- 19Amiz Z, Cancer Survivorship and Return to Work: UK Occupational Physician Experience, 2008.
- 20 Personal communication D. Playford.
- 21Wills-Johnson, Nick and Kenyon, Peter and Koshy, Paul. 2005. A cost benefit analysis of vocational rehabilitation services provided by CRS Australia. Journal of Contemporary Issues in Business and Government. 2005; 11 (1): pp. 71-94.
- 22 Amir Z, Neary D and Luker KA (2008) ‘Cancer Survivors’ views of work three years post-diagnosis – A UK Perspective’, European Journal of Oncology Nursing, 12(3):190-197.
- 23 Most provisions of the Equality Act will come into force in October 2010.
- 24 Simm C, Aston J, Williams C, Hill D, Bellis A, Meager N, Organisations’ Responses to the Disability Discrimination Act, DWP Research Report 410, 2007.
- 25 Cancerbackup, CIPD, Working with Cancer: Survey Report 2006.
- 26 Cancerbackup, Work and Cancer: How cancer affects working lives, 2005.
- 27 Macmillan Cancer Support, Health and Wellbeing Survey 2008.
- 28 Manchester Macmillan Research Unit report to Macmillan (not yet published) of a 2009 survey of 370 line managers from the public, private and voluntary sectors in the North East of England.
- 29 http://www.macmillan.org.uk/GetInvolved/Campaigns/WorkingThroughCancer/WorkingThroughCancer.aspx
- 30 Macmillan conducted an online survey during February 2010 of 1,019 people with cancer. 314 (31%) of these people have active cancer and the rest are in remission.
- 31 Sourced from the DWP website’s tabulation tool in 2008, http://18.104.22.168/100pc/ibsda/icdgp/beneficiary/a_carate_r_icdgp_beneficiary_nov08.html
- 32 Policy Exchange, Henry Featherstone & Lilly Whitham, The Cost of Cancer, Research Note, February 2010.
- 33 Demonstrating the Economic Value of Co-ordinated Cancer Services: An examination of resource utilisation in Manchester, Macmillan Cancer Support, March 2010, http://www.macmillan.org.uk/Aboutus/Healthprofessionals/Cancer_care_research/MonitorResearchinManchester-costeffectivecare.aspx
- 34 http://www.macmillan.org.uk/learnzone