Bereaved sister reveals devastating cost of brain tumour diagnosis

New report from the Brain Tumour Research charity highlights punishing financial burden.

A bereaved sister hit by the devastation of a brain tumour diagnosis has welcomed a new report exposing the punishing financial burden of the disease.

Alexandra Foulis, from Knaresborough, was diagnosed with a grade 3 astrocytoma brain tumour at the age of 22. She immediately had to give up work and her driving licence as she underwent radiotherapy and chemotherapy.

Her parents, who were self-employed pub landlords, also had to give up their job to care for her. Alexandra died in 2011, aged just 24, and her sister, Melissa Foulis, is now speaking out about the financial impact of the devastating disease.

Melissa 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.

The report Exposing the Financial Impact of Brain Tumours released by the Brain Tumour Research charity oreveals the financial impact of a brain tumour diagnosis is double that for all cancers. Patients said they suffered a loss of independence and isolation which, combined with a dramatic decline in their earning potential, brought an impact almost as distressing as the disease itself.

The report, based on the experiences of 368 people will be fed into a formal inquiry into the hidden costs of a brain tumour being led by the All-Party Parliamentary Group on Brain Tumours for which Brain Tumour Research provides the secretariat. The report found:

An average financial loss of £14,783 per household per year – more than double the £6,840 for all cancers Households face an annual rise in household bills of £1,000 and many also have to make expensive modifications to their homes

Patients also have to find around £1,582 in travel costs for hospital visits

Suffer a crippling £391 increase in travel insurance making a much-needed holiday a distant dream for many.

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 stimulating further increases in the national investment for research into brain tumours, offset the debilitating loss of income by providing additional benefits and fund easily accessible financial support for patients while they are receiving treatment.