The sister of a Knaresborough woman who tragically died after battling brain cancer has backed a new report, highlighting the financial costs of living with the disease and the distress it causes.
Alexandra Foulis faced so many additional challenges after being diagnosed with a grade three astrocytoma brain tumour at the age of 22. It left her unable to work and drive, as she underwent radiotherapy and chemotherapy. Her parents, self-employed landlords, also gave up their jobs to care for her. Alexandra sadly died in 2011.
Following the release of a report this week from Brain Tumour Research, which said the cost of a brain tumour diagnosis is double compared to other cancers, her sister Mellisa Foulis said: "As if Alexandra’s diagnosis wasn’t distressing enough, the family also had to cope with a financial burden. To name just a few financial stresses, there was the cost of hospital appointments and transporting Alexandra in a wheelchair; the cost of caring for her at home; and the impact of my parents having to give up work to care for her.
"What’s more, they didn’t qualify for benefits due to my dad’s income, suffering £1,000 a month shortfall. They were hardly able to pay for the daily 40 mile round trips to hospital.”
Based on the experiences of 368 people the report will be fed into a formal inquiry into the hidden costs of a brain tumour, which is being led by the All-Party Parliamentary Group on Brain Tumours. Brain Tumour Research provides the secretariat of this group.
The report revealed that there is an average financial loss of £14,783 per household per year. This is more than double the £6,840 for all cancers.
It also leaves an annual rise in household bills of £1,000, with many people also needing modifications to be installed at their homes.
Patients also face an increase if they wished to travel for a holiday , a £391 increase in travel insurance, making the potential for this a 'distant dream'.
The loss of their independence, experiencing isolation, coupled with the loss of their earnings brought almost as much distress as the disease itself, according to patients in the report.
Sue Farrington Smith, Chief Executive of Brain Tumour Research, said: “The financial penalties, the loss of independence and the consequential feelings of isolation compound the poor prognosis endured by brain tumour patients, and this has got to stop.”
The charity is calling on the Government to speed up access to better treatments, by increasing investment research into brain tumours. It is also calling for loss of income to be addressed by providing additional benefits and funds, to help support patients while they are receiving treatment.
The report also included a break down of the annuals costs to households, which are as follows:
Annual financial Impact average:
Loss of Salary £15,848
Benefits Received £4,767
Net Loss of Income overall: £11,081
Travel Costs for Treatment £1,582
Household Items £881
Medicine not covered by benefits or insurance £544
Childcare Costs £226
Debt Interest £78
Holiday Travel Insurance £391
Total Additional Costs £3,702
Total Impact (per household per year) £14,783
The report highlighted that the sudden increase in expenditure, from additional living and transportation costs along with a fall in income, could lead families to quickly fall into debt. 11 per cent of people surveyed in the report taking out additional loans or credit card debt, averaging £4,762.
The amount people took out ranged considerably, with £500 to £300,000 taken over over two year, the average estimated cost of interest stood at £714 per year, an average of £78 per year when grossed across the brain tumour population.