A brain tumour diagnosis is a distressing experience: as well as the physical and emotional impact, there are practicalities to consider such as employment.
A brain tumour diagnosis is a distressing experience: as well as the physical and emotional impact, there are practicalities to consider, not least income and employment. It may be necessary to take medical leave from a job for example, with no clear timescale for when it will be safe to return due to the brain tumour treatment.
According to Brain Tumour Support, it’s not obligatory to tell an employer about a brain tumour diagnosis unless it affects your ability to do your job. However, sometimes a brain tumour can cause symptoms such as memory loss, fatigue, eyesight problems, or changes in behaviour or thinking.
It is likely that you will also need to take time off to attend medical appointments even if you do not believe that your ability to work is impaired. Under the The Equality Act 2010, your legal rights to be treated without discrimination are protected.
A brain tumour may be classed as a disability, and your employer must put reasonable adjustments in place to support you. A disability is defined as “having a long-term physical or mental impairment which has a substantial adverse effect on your ability to carry out day-to-day activities.”
“Reasonable adjustments” could involve providing accessible equipment, and training staff members in how to deal with a seizure. You also have the right to be protected from unfair treatment, harassment and victimisation, and your employer should find ways to support you to continue working if you are classed as medically fit enough to do so.
If the time you need to take off exceeds the company’s sick leave allowance, you are entitled to claim Statutory Sick Pay (SSP). Some companies also have their own long-term sick pay schemes. Furthermore, if your partner or a family member needs to take time off work to support you, they may be able to claim Carer’s Allowance.
Unfortunately, not all employers are aware or willing to comply with the regulations. The Brain Tumour Charity reports on the difficult experience of Grace, who was diagnosed with a brain tumour when she was working as a hairdresser in Stockport, Greater Manchester, in October 2022, aged 28.
Grace’s mother Carmel is a former neurosurgical nurse, and was immediately worried when Grace was admitted to hospital following a seizure that left her lips blue.
Carmel said: “We now know that she’d had a tonic clinic seizure, and that she had been having nocturnal seizures for some time. When a consultant and a nurse came to talk to us about the scan results, I knew from my nursing days that things were serious.”
“Grace was diagnosed with epilepsy and a left frontal operculum brain tumour. It was the irritation of the mass that was causing her seizures.”
Following the diagnosis, Grace was signed off work for six weeks, and she took medication to control her seizures. Her GP recommended that she should make a phased return to work in January 2023, attending for two days per week.
Grace enjoyed her job and was looking forward to returning to the salon to catch up with her colleagues and clients. However, her manager was obstructive and did not accept the GP’s fit note.
Grace explained: “I felt like I was being a burden to the business and my manager and that every time I tried to go back to work, they kept putting barriers in place. I also felt like I was being an inconvenience as I was going to go back on sick leave again for my brain tumour operation.”
“They blamed everything on HR or health and safety advice and wouldn’t accept my GP’s fit for work return.”
Grace eventually launched a formal grievance, which was dismissed, as was the appeal. Eventually, she felt as though resigning was the only option, and she did so in May 2023. After seeking further advice, Grace decided to represent herself at an employment tribunal in April 2024.
Despite the stress of the experience in addition to the effects of the tumour, Grace found the strength to see it through. She said: “The tribunal was scary as I’ve never been in a situation like that before. It was also very upsetting as I thought my work colleagues were my friends. But I saw them in a completely different light following my diagnosis.”
She added: “I knew what they were doing was wrong but representing myself was daunting. The judge and the panel were very understanding and spoke in terms I would understand as I’m not a lawyer.”
“It was intense and upsetting but I’m so glad I did it and got the justice I deserved. Alongside that I wanted to become an advocate for anyone with hidden disabilities because we have rights and cannot be treated this way.”
Fortunately, Grace won her case and she was awarded compensation for lost earnings and injury to feelings, although the employer was found willing to make reasonable adjustments.
The judgement stated: “The respondent might have been better able to explain the approach that they took had they educated themselves about the claimant’s condition. They did not do so. They could have prepared for, and considered, the claimant’s return to work at an earlier stage, prior to immediately before the expiry of the claimant’s previous fit note.”
“They did not obtain occupational health advice about what was required, as they could have done.”
Grace’s story has a happy ending, following successful surgery to remove her brain tumour in October 2023. She’s also got married and found a new job where she feels welcomed and accepted by all of her colleagues.
If you would like more information about brain tumour treatment, please contact Mr Andrew McAvoy of Amethyst Radiotherapy.
Centres of Excellence for Stereotactic Radiosurgery treatment of complex Brain Tumours
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