YOUNG cancer patients are facing discrimination at work and struggling with the financial costs of cancer, new research by the charity CLIC Sargent has found.
The research was commissioned as part of a three-year partnership between Societe Generale, one of the leading European financial services groups, and CLIC Sargent, the UK’s leading support charity for children and young people with cancer. The partnership aims to help young people achieve their employment and education ambitions despite their cancer diagnosis.
The research shows that 1 in 4 young people aged 16-25 have felt discriminated against at work or when applying for a job because of their cancer or treatment. CLIC Sargent found that while many employers were initially supportive and understanding, this often is not the case further down the line when hospital appointments and check-ups continue. Treatment for young cancer patients can be long and intense, with regular treatments and check-ups sometimes lasting years. The research comes at a time where young people with cancer also face the additional worries of financial and employment uncertainty, due to the current coronavirus pandemic.
Sam Tredrea, 26, from Camborne in Cornwall was diagnosed with acute lymphoblastic lymphoma in March 2015 when he was working in a call centre. After his cancer diagnosis, Sam felt unfairly treated by his then-employer and found it difficult to find information on what he was entitled to.
“At first my employer was OK with it. They said ‘take the time that you need, you can have your sick pay for six months’. It was Statutory Sick Pay, barely anything.
“At three months they came to do a home visit. I was sat there out of breath and clearly visibly unwell, and they didn’t seem to be very supportive or understanding of my situation. I felt like they were checking in on me to see if I was telling the truth, even after all the doctor’s notes I’d given them.
“At the end of the six months, they told me that my sick pay was coming to an end and was asking me when I would be coming back. I had to be honest with them and say I really didn’t know when I could come back to work but they started pushing for an answer.
“They told me that I could hand my notice in to take away the stress of them contacting me. I asked them what would happen if I didn’t do that, and they said they’d have to bring me in for a meeting to discuss my future and potentially dismiss me because of my ‘capabilities’. I asked them outright if they were sacking me because I had cancer, but they said no. I wasn’t prepared to hand my notice in so I told them I’d leave it with them to contact me about what would happen next. I didn’t hear anything from them and a year and a half later I called to check what my status was. Even though I wasn’t being paid I was still on their employee records. At that point, I told them I was handing my notice in and wouldn’t be coming back which they accepted.
“I found it difficult to find information on what I was supposed to do and how to deal with being treated the way I was. You put all your energy into surviving and dealing with the prospect that every day your cancer could get you, so you don’t focus on employment, you have no energy left.”
Young people with cancer may not know their rights or feel confident enough to ask for what they are entitled to. While CLIC Sargent found only two out of five young people consider themselves as having a disability due to their cancer or treatment, all young people with cancer automatically meet the legal definition of a disabled person from the day of diagnosis. This means they are covered by equalities legislation and employers cannot discriminate against them.
The research also found that half of young people have taken unpaid leave during treatment, while some had difficulties claiming Statutory Sick Pay, which can leave young people with huge gaps in their earnings. Following treatment, many young people are going back to work before they are physically or emotionally ready, simply because they cannot afford to take further time off. Four out of five young people who went back to work before they felt ready said this was because they needed the money.
Young people starting out in their careers may be just beginning to feel independent and financially responsible for themselves. Being hit with a cancer diagnosis can have a devastating impact on their ability to pay for basics such as food and travel.
“I lived with my parents and it felt like a loss of independence. I was unable to do anything in those first couple of months.
“In 2017 I left the previous employer and started working part-time in a local supermarket. They were nothing but supportive in every way possible. I’m now working in a new role in business system support and they’ve also been great. It was a big moment to get back into full-time work, I’m living a stereotypical ‘normal’ healthy working adult life and it feels good.”
Parents of children with cancer are also facing significant challenges in the workplace because of their child’s illness. Many need time off to care for their child, whose treatment could be in a specialist hospital many miles from home. Parents are also going back to work before they feel ready, with over half saying this was because they needed the money. While some parents may be able to access Carer’s Allowance, parents and CLIC Sargent social care staff have reported that the support is too narrow and the amount is too low.
CLIC Sargent has created a new ‘Employers Toolkit’ to help employers understand how they can better support staff caring for a child with cancer and young people with cancer. It includes key information and advice about reasonable adjustments, flexible working and effective communication.
Helen Gravestock, Associate Director of Policy, Influencing and Voice at CLIC Sargent, said:
“It can be tough for any young person starting out in their career, but young cancer patients are particularly hard hit by the impacts of treatment and possible long-term side effects such as mobility issues or chronic fatigue.
“CLIC Sargent’s social care staff support young people and parents to deal with issues at work – from struggling to access paid leave and reasonable adjustments to feeling unsupported and as though they are facing discrimination.
“We understand that it can be really difficult for employers to know how to best support young people with cancer or parents, especially in the current climate. We’re confident that with improved awareness about the issues of children and young people’s cancer and better support from the government and employers, young cancer patients can thrive, not just survive.”
The new research was supported by CLIC Sargent’s ‘Young Researchers’ – a group of 14 young people aged between 16-25 from across the UK who have had cancer and been supported by the charity. The Young Researchers helped to design and test survey questions, analyse survey results, and drafted and designed elements of the final report.
Societe Generale’s UK employees chose CLIC Sargent as its charity partner in March 2018 and aims to raise £1 million over the three-year partnership. The research project is part of Societe’s Generale’s overall commitment towards supporting young people to access education and employment. For more information about CLIC Sargent go to: www.clicsargent.org.uk