Brain Tumour Research report exposes shocking financial burden

A report from the Brain Tumour Research charity released today exposes the financial cost and shocking impacts of this devastating disease.

The survey’s revelations about life following a brain tumour diagnosis include:

• An average financial loss of £14,783 per household per year – more than double the £6,840 for all cancers

• Families face nearly £1,000 per annum extra paid on household bills, with patients often having to make costly modifications to their home

• Having a £1,582 annual increase in travel costs for hospital visits made worse by having to surrender driving licence on diagnosis

• Suffering a dramatic £391 average increase in travel insurance premiums making a much-needed holiday a distant dream for many patients

Sue Farrington Smith MBE, Chief Executive of Milton Keynes-based Brain Tumour Research, told Charity Today:

“The financial penalties, the loss of independence and the consequential feelings of isolation compound the poor prognoses endured by brain tumour patients and this has got to stop. We are 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 for brain tumour patients by providing additional benefits and fund easily accessible financial support for patients while they are receiving treatment.”

Brain Tumour Research conducted an online survey receiving 368 responses. The report will contribute to 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.

Among those whose case studies are highlighted in the report are Ben Lindon, aged 40, a father-of-two from Malvern. He was diagnosed with an aggressive brain tumour in March 2008 and has far outlived his prognosis. He said: “Having a brain tumour has cost me tens of thousands in lost income over the years, it has been a huge struggle to provide for my family and I have had to totally give up my plans of buying a house.

“The impact has been enormous; having had an exciting career as a journalist I had to re-train as a tree surgeon and then had to pack that in as my seizures made me unfit to work. After that, I worked part-time and then relied on benefits.

“My condition has deteriorated further lately and I haven’t been able to work for more than a year, being currently reliant on a wheelchair and a mobility scooter to get around. I continue to care for my two children but I now have to rely on another member of the family being with me or pay to have additional support.”

Also featured in the report is Ann Swadden from Swindon. Ann underwent an “awake” craniotomy 18 months ago to remove a low-grade glioma. She said: “Being told I had a brain tumour wasn’t really the worst thing. I had to surrender my driving licence and that affected my ability to work. The huge rise in the cost of travel insurance meant I couldn’t afford to go on a family holiday to get away from it all. The threat to my independence the diagnosis caused made my life so much more difficult at a time I really needed help and support.”

As a result of her diagnosis, Sarah Gaffney, from Manchester, can no longer work as an NHS manager. She said: “Being diagnosed with a brain tumour is undoubtedly life-changing. Overnight, I was required to surrender my driving licence. Surgery affected me physically – reducing my mobility and meaning I travel mostly by taxi (at increased cost), relying much more on friends and family. During 18 months of further treatment, I was unable to continue my full-time job as an NHS manager and now work on a freelance basis.”

Gill Graham from Hughenden Valley, Buckinghamshire, was widowed by a brain tumour. Her husband Andy, 52, died 18 months after he was diagnosed with a low-grade haemangioma. Gill said: “We lost Andy’s income and I put my job in jeopardy by taking so much leave for hospital appointments. Now he’s gone, I’m a single mum and no longer employed. I work for myself to support our sons and I have to scrimp and save.

“The financial burden is yet another devastating impact of Andy’s brain tumour diagnosis and, even 10 months on from his death, it’s a constant worry.”

Also struggling with the financial burden of a brain tumour diagnosis are David and Helen Todd from Bangor, County Down. The couple, who have a son, achieved their dream of opening their own business only to see it shut weeks later. David said: “It is difficult to convey just how much our lives have been changed by my diagnosis. One of the hardest things has been having to hand back my driving licence and also the wider impact the diagnosis has had on our family.

“I had previously been employed in the tile and bathroom industry and my dream was to have my own business. With Helen’s help, I opened my own showroom but we had to close after just two months in business. The uncertainty over my future and the disruption caused by multiple hospital appointments just meant it was not viable to continue. Helen left her own job to help me with the business and has now had to go back to work to help us stay afloat.”

Kelly Ann Alexander, 41, from Blackburn, West Lothian, also lost her driving licence – and along with it went her livelihood as an HGV driver and her much-loved job at a showjumping yard. Kelly Ann, whose initial surgery was followed by a further operation to remove part of her skull after a life-threatening infection, is now facing further treatment. She said: “I don’t think people who haven’t gone through this can fully appreciate the impact which a brain tumour diagnosis has on the patient and their loved ones. To learn you have this disease is bad enough. On top of that, I have had to surrender my driving licence, I have had to give up my dream job working on a showjumping yard, can no longer earn my living as an HGV driver and have to rely on others.”

“My husband Kevin has had to make up for my lost income and my parents have basically had to bankroll me.”

You can read the full report here.

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