7 November 2016
Jim McKay, 39 from Edinburgh, was diagnosed with neuroendocrine tumours, a rare form of cancer, last year. At the time, he was working as a manager in a publishing company. Following time off for a major operation, he returned to work full-time but within
An estimated 1,800 of those who are diagnosed with cancer each year in Scotland will face discrimination in their workplace (1), according to new research released by Macmillan Cancer Support and YouGov at the World Cancer Congress in Paris (2).
Worryingly, 1 in 4 (24%) of those in Scotland say they returned to work before they felt ready (3) and 23% give up work altogether as a result of their diagnosis (4).
The research, which explores the impact of cancer on working life, found that nearly a fifth of people (18%) who return to work after being diagnosed with cancer in the UK say they faced discrimination from their employer or colleagues. In addition, more than a third (35%) report other negative experiences, such as feeling guilty for having to take time off for medical appointments and a loss of confidence in their ability to do their job (5).
Macmillan Cancer Support warns that employers must offer better support to the growing number of people with cancer in the workplace. With improvements in survival rates for cancer and more people working for longer and retiring later, the number of people of working age in the UK with cancer is predicted to reach 1.7 million by 2030 (6).
The charity found that the vast majority (85%) of people in work when they were diagnosed with cancer in the UK say that continuing work is important to them (7). The most common reason for this is ‘to maintain a sense of normality’ (60%) and others include ‘I enjoy my job’ (45%) and ‘I needed the money’ (54%) (8).
Macmillan is calling on employers to make sure that they have appropriate policies in place and that their HR and line managers have the skills to support staff affected by cancer. It is also vital that employers fulfil their legal obligations to make reasonable adjustments which could enable employees with cancer to stay in or return to work if they want to.
Jim McKay, 39 from Edinburgh, was diagnosed with neuroendocrine tumours, a rare form of cancer, last year. At the time, he was working as a manager in a publishing company. Following time off for a major operation, he returned to work full-time but within a few months realised he was finding it difficult to cope with fatigue and other side effects of his illness and treatment.
Jim said: “When you come out of hospital you get a huge burst of energy because you think, ‘great, I’m alive, I’m going to seize the day.’ It’s human nature and the right attitude but you don’t forsee the kind of adjustments you’re going to need to make to start living a full life again. Understanding your situation is a very personal experience and you have to learn some hard lessons through trial and error. Every patient will have to navigate their own unique circumstances and coming to understand this is half the battle.
“As time moved on, I struggled with my energy levels and couldn’t always work 9 to 5. I was trying to continue as normal but was becoming completely exhausted. When the physical fatigue gets to you mentally, times can get quite tough. I realised I needed to understand better a way to manage the situation.”
During a hospital check-up Jim’s partner saw a leaflet about the Macmillan Work Service run by NHS Lothian and was put in touch with a support worker who quickly put together an action plan to manage the gap in needs between Jim and his employer. Since then, Jim has changed jobs and now works for the Law Society, which has been very supportive of any requirements or adjustments he’s needed.
Jim said: “Before I started in my new job, the employer sent me to see an occupational therapist twice and I am due to meet with them again soon. My new employer’s attitude has been, ‘What do you need to have in place to get the best out of you?’ I speak with HR and my line manager regularly about my ongoing health problems and they are both supportive and accommodating. Consequently, I am able to work with energy and am engaged with the organisation in a way that ensures I am at my most productive.
“At my previous job I never once spoke to an occupational therapist or a member of the HR team. The only communication I had from HR was a letter telling me the date they would put me on SSP. Consequently, my manager and I had to negotiate the space between needs ourselves and the relationship suffered. What I’ve learnt is you need a plan to work out a path for you, and importantly the employer needs to be helped to understand that you don’t have all the answers and will be learning as you go. It can be frustrating for an employer, and that is where an open and honest line of conversation with your employer is vital.”
Janice Preston, Head of Macmillan Services for Scotland, said: “For many people living with cancer, returning to work is hugely important. As well as helping them manage financially, we know it helps people feel more in control of their lives again and brings a sense of normality which can boost their recovery.
“It is therefore appalling that, in too many cases, help to stay in employment is not always offered to people living with cancer who want to work and are able to do so, leaving them with little choice but to leave. During what is already a stressful and difficult time, they should be able to rely on the full support and understanding of their employer.”
Macmillan is helping thousands of employers to support staff affected by cancer through their Macmillan At Work scheme. As well as offering a free toolkit, resources and advice, the charity gives specialist training sessions for line managers and HR professionals to help make supporting staff as easy and rewarding as possible.
Macmillan also runs a support service for people living in Edinburgh and the Lothians to overcome work problems. The Macmillan Work Service is delivered by NHS Lothian’s vocational rehabilitation team and aims to help people maintain their preferred working life which could mean staying at work during treatment or returning to work afterwards.
Anyone affected by cancer can contact the Macmillan Support Line to discuss their worries, talk through their options, or just have a chat on 0808 808 00 00, or they can visit Macmillan’s Online Community. For more information visit www.macmillan.org.uk/work.
Notes to Editors:
(1) People living with cancer who were employed at the time of diagnosis and who had returned to work after their diagnosis were asked whether they had experienced any of the following upon returning to work:
• Employers not making reasonable changes to enable you to do your job (e.g. to cope with fatigue);
• Found it difficult or not been able to take time off work for medical appointments; Being threatened with or given a warning for sickness absence;
• Feeling unfairly treated by employers or colleagues (for example, being given unfair workloads);
• Your employer implying or suggesting that you would be better off not continuing to work;
• Been passed over for promotion in favour of someone with less experience or ability to do the job;
• Having an unfavourable appraisal or performance review linked to your cancer;
• Feeling bullied or harassed for a reason connected with your cancer;
• Had difficulty negotiating a return to work;
• Had your entitlement to sick pay disrupted by your employer;
• Been demoted to a lower-paid or less demanding job without your agreement;
• Felt pressured into reducing your working hours.
• Or other issue(s).
Of the 836 who returned to work, 18% had experienced one or more of the above. We used the following calculation to estimate the figure of around 1800:
• Total number of people diagnosed with cancer each year in Scotland = 31,771
• Average rate of employment in the UK at the point of diagnosis among those diagnosed with cancer in the past year = 37%9 = 11,755 of those diagnosed with cancer each year in Scotland will be in employment at the time they are diagnosed
• This research shows 83% of those in employment in the UK at the time of diagnosis returned to work afterwards in some capacity, including those who change their employer, job role, or hours = 9757 who could return to work
• We applied the figure of 18% who experienced one or more examples of discrimination to this number to produce an estimate of 1800 people
This research does not give a full breakdown of people’s long-term employment outcomes.
There is not much variation in rate of employment at diagnosis across Great Britain, so we have applied the average for Great Britain to regional incidence figures.
(2) All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1009 people living with cancer who were employed at the time of diagnosis. Fieldwork was undertaken between 5/25/2016 - 6/12/2016. The survey was carried out online. The figures have been weighted by region.
(3) People living with cancer who were employed at the time of diagnosis, who returned to work, were asked if, when they returned to work, they felt ready to do so.
(4) People living with cancer who were employed at the time of diagnosis were asked whether there were any changes to their working life as a result of their cancer diagnosis.
(5) People living with cancer who were employed at the time of diagnosis were asked whether they had experienced any of the following upon returning to work:
• Guilt for having to take time off for appointments or feeling unwell;
• Feeling less confident in your ability to do your job;
• Added stress in the working environment;
• Felt pressured into returning to work before feeling ready to return;
• A lack of understanding of your needs from your employer;
• Difficulty coping with the job;
• A lack of understanding of your needs from your colleagues;
• A deterioration in your career prospects;
• A reduction in your salary;
• Feeling stigmatised;
• A deterioration in your working relationships;
• Felt pressured into reducing your working hours.
(6) Oxford Economics (2012), Can Work, Will Work. Valuing the contribution and understanding the needs of people living with cancer in the workforce.
(7) People living with cancer who were employed at the time of diagnosis were asked how important was it for them to continue work after being diagnosed with cancer. Responses included those who answered ‘Very important’ (68%) and ‘Fairly important’ (17%).
(8) People living with cancer who were employed at the time of diagnosis, who felt it important to continue working after diagnosis, were asked to select from the following reasons:
• To give me a sense of normality
• To keep me positive/keep up morale/self-esteem
• I need the money
• I enjoy my job
• To give my life day-to-day routine
• To contribute to my health and wellbeing
• For the social side/ interacting with other people
• To support my family
• I didn’t want to let my employer down
• To get me out the house
• I was frightened I would lose my job
• I was worried about the impact on my future career prospects
• I was worried I wouldn't be able to get another job after having had cancer
• Other reason(s)
(9) Macmillan Cancer Support/Truth online survey of 955 adults in England, Scotland and Wales who have a cancer diagnosis. Fieldwork was undertaken between 3 - 21 September 2015. Data has been weighted. Survey results show that 36.6% of the 131 people diagnosed with cancer in the past year were employed at the time of their most recent cancer diagnosis.