The financial burden of a brain tumour diagnosis on an individual and their family can be significant.
Our recent research demonstrates that the burden on families is great: 1 in 2 people affected by a brain tumour experience financial difficulty and 28% of people with a brain tumour had to give up work entirely1.
Research conducted by Macmillan Cancer Support (Macmillan) suggests as many as 83% of people diagnosed with cancer are on average £570 a month worse off2.
Additional costs such as hospital parking, travel, household bills and medicine exacerbate the pressure.
For example, research by Macmillan found that the cost of travel to and from appointments affected 69% of people with cancer with an average cost of £170 per month2.
Young people (aged 19-24) can be particularly financially vulnerable when being treated for cancer as they are more likely to be in education or entry level employment and are less likely to have a safety net of years of saved income.
The family of someone with a brain tumour often has to make financial, career and lifestyle sacrifices to deliver care. Our research showed that:
55% of parents with children affected by cancer who responded to a Clic Sargent survey said they had taken unpaid leave4.
A period of reduced income is likely to coincide with additional costs with parents on average spending an extra £367 per month or £4,400 per year to care for their child after a diagnosis of cancer4.
In response to the need highlighted in the findings of our report Losing Myself: The Reality of Life with a Brain Tumour we have funded a clinic to provide benefits and financial advice.
The clinic is in partnership with Rushmore Citizens Advice and operates nationally. It runs every Tuesday from 12:30-16:00, is accessible via phone and e-mail and no appointment is necessary.
Julia Baker was diagnosed with a grade 2 meningioma and as a result of her condition was forced to take leave from work. In the months since her diagnosis Julia's life has been plagued with uncertainty. As well as a deterioration in health and a lack of certainty about what treatment she will have she is not sure if she can support herself financially.
She does not feel well enough to work and may need further treatment.
However, even with personal independence payments, a small benefits payment to people aged 16-64 with a long term health problem, and the support of a partner means that Julia may have no choice but to return to work to support herself.
Julia believes that if she had been made aware of what benefits she was entitled to at the point of diagnosis the situation may have be quite different. Instead, she must juggle the unpredictable nature of her condition with financial uncertainty.
“Julia's story shows how a brain tumour can turn financial security on its head in just a few months even with a supportive family. Anyone is vulnerable" says Cameron Miller, Operations Manager Central Services.
“When diagnosed with a brain tumour people have a right to have all their treatment options fully explained to them. We believe that the same should apply to them if they need to apply for benefits, they should be given all the facts and have all their options explained."
Julia got in touch with our welfare and benefits helpline who advised her on her options: “Financial matters are a massive worry at any time, particularly when you're ill and off work. To be able to contact a dedicated service like this which is staffed by people who understand is invaluable."
We encourage anyone affected by a brain tumour who needs advice on these issues to get in touch.
Read more information about the clinic