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The costs of cancer to children and carers, CLIC Sargent and Societe Generale report

27/07/2020

Young people with cancer and their parents face an array of difficulties aside from the more obvious health-related problems they have to confront. Maintaining an income and retaining employment and finding empathetic employers are at the forefront of issues that leave considerable room for improvement, according to a study published by Societe Generale and CLIC Sargent.

The objective of a new report, Hard Work: The costs of cancer on employment for young people and their families, is not to point fingers but more to understand what employers need to know to support young people with cancer or their parents and understand how to deal with the financial constraints and institutional policies that often guide companies. The findings show that employers can do more by building on existing practises.

By providing greater flexibility and agility as well as a safe and secure psychological contract between an employer and an employee, companies can have a positive impact, while mitigating any loss of earnings for individuals. The report argues that it is the role of employers to support them in their journey, whatever the circumstances.

The duty

Employers have a legal duty to make ‘reasonable adjustments’ so that people are not disadvantaged because of cancer, an obligation unknown to 71% of affected young people, with half of those employed during or since their diagnosis receiving no adjustments, according to the report.

While72% of respondents felt receiving reasonable adjustments would have benefited them, nearly 40% recipients said they did not meet their needs.

The failing is often due to the financial and human resource limitations of companies, but also a lack of awareness, “although we also uncovered good practice and a range of great ideas for how support can be improved,” stated the report.

Time away

Of the two thirds of young people and their parents who cannot maintain their jobs due to cancer, 87% of parents stop their work for more than six months and half stay away for a year with the leave available often depending on their employer’s policies.

While parents and carers are entitled to time off after a diagnosis, there is no legal obligation to pay them, and cancer costs families an extra £600 per month on expenses. For young people this figure is £360 per month, according to CLIC Sargent research from 2016.

Furthermore, the welfare system is inadequate, according to the report: statutory sick pay is not available to enough young cancer patients and their parents, while Carer’s Allowance is too low and hard to access.

While one in five parents left work to look after their ill children once a diagnosis was received, Carer’s Allowance is available only if 35 hours or more of care per week is required. Moreover, the allowance is applied inconsistently, with those in England, Wales and Northern Ireland worse off than in Scotland, according to Carers UK research conducted in 2018.

Nearly one in five parents have taken over four months of unpaid leave during their child’s treatment, while two out of five young people diagnosed with cancer have taken over a month, according to the report.

The recommendations from the report for greater government support for employees include: making statutory sick pay available to all young cancer patients in employment when diagnosed; easier access to Carer’s Allowance, which should be higher and more consistently applied.

The return

Eighteen percent of those diagnosed with cancer returned to work before they felt ready (YouGov and Macmillan, 2018). Half of young people and 61% of parents went back to work early, with 80% and 50%, respectively, needing the money, according to the report: 24% of parents and 24% of young people returned because they felt pressure from their employer. Others felt guilty for being off work or indebted to the support of their organisation, manager or colleagues.

Parents caring for an unwell child are legally entitled to request flexible working if they have been employed for at least 26 weeks and have not requested flexible arrangements in the last 12 months. Nearly half have never experienced flexible working, of which nearly two out of three feel they would have benefited from reduced or flexible hours, working from home and altered responsibilities.

Two out of three parents struggled to manage their child’s cancer and treatment alongside their work, with 10% feeling their employer was not supportive at diagnosis, increasing to 16% during treatment and 27% when it finished. Nearly half of young people and two out of three parents reported a reduction in earnings due to cancer, according to the report.

While there were many examples of good practice from employers, some have excellent human resources policies that are not always put into practice.

The report recommends better employer awareness of the return to work and of flexible working and reasonable adjustments, which should be more available.

Discrimination

One in five people returning to work after being diagnosed with cancer say they have faced discrimination from an employer or colleagues. (YouGov and Macmillan, 2018.)

While two out of five considered cancer a disability, some do not and others were either not aware of the legal definition or were put off by the stigma, according to the report.

Despite legal protection, one in four young people suffered discrimination at work or when applying for a job, according to the report. Compounding this insecurity, parents worry that employers will be reluctant to take these children on if they are honest about their illness.

While UK legislation protects parents from being treated less fairly by employers because of their child’s cancer, more than one in four have felt unfairly treated at work or when applying for a job. “We want to see improved awareness within the workplace, with appropriate training and resources available to those who are supporting young cancer patients or their families,” recommended the report authors.

This report was commissioned as part of a three-year partnership between Societe Generale in the UK and CLIC Sargent, helping young people achieve employment and education ambitions despite their cancer. The young researchers involved in all stages of this project have all experienced cancer and are: Abigail Cresswell, Anna Stark, Ayesha McGregor, Caoimhe Wills, Chloe Dresser, Emily Merten-Jones, Georgia Jones, Leighann Hickinson, Michela Quecchia, Owen Bentley, Rebekah Birch, Sam Tredrea and Vaishnavi Lalam.