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Press release

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Family reveals devastating cost of brain tumour diagnosis. New report from the Brain Tumour Research charity highlights punishing financial burden - Carrie Holbrook

Oct 24, 2018

A widow who lost her husband to a brain tumour has welcomed a new report exposing the punishing financial burden of the disease.

Steve and Carrie Holbrook of Great Paxton, St Neots met at Redborne Upper School in Ampthill and believed they would grow old together. They married in 2005 and had two children, Emma, now nine and Mason, six. Steve was an officer for Bedfordshire police for 15 years. He died in November 2016, aged 37, just 21 months after being diagnosed with an aggressive brain tumour.

Carrie said: "When Steve was diagnosed, not only did we have the emotional and physical turmoil of his diagnosis to deal with, we also had the extra concerns of how we would manage financially, knowing that Steve's diagnosis was life-limiting.  

“One of the first things that happened to Steve was that his driving licence was taken away. This took away a lot of Steve's independence and meant he was unable to get to work 40 miles away, without the very kind help of some of his colleagues. We also lived 25 miles from Addenbrooke’s Hospital, where Steve had to go for radiotherapy and chemotherapy, as well as numerous scans, oncology and hospital stays throughout his 21 month journey. We had to factor in additional petrol costs and childcare needs, plus the need to take time off work to attend appointments.  

“Towards the end of his life, it became impossible for Steve and me, as his primary carer, to continue to work. Steve's health deteriorated very quickly and we were looking at the possibility of having to make some home adaptations at what would have been additional expense.  

“Steve’s death has had a huge impact on the family and left me a single parent and sole provider for our two children.”

The report Exposing the Financial Impact of Brain Tumours released by the Brain Tumour Research charity on Monday 15th October reveals 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.

 

For further information, please contact:
Liz Fussey at Brain Tumour Research on 07811 068357 liz@braintumourresearch.org

 

Notes to Editors

Brain Tumour Research is the only national charity in the UK dedicated to raising funds for continuous and sustainable scientific research into brain tumours, and we are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.

We are building a network of experts in sustainable research at dedicated Centres of Excellence whilst influencing the Government and larger cancer charities to invest more nationally.

We welcome recent funding announcements for research into brain tumours from the UK Government and Cancer Research UK – £65 million pledged over the next five years. However, this potential funding of £13 million a year comes with a catch – money will only be granted to quality research proposals and, due to the historic lack of investment, there may not be enough of these applications that qualify for grants from this pot.

We want research funding parity with breast cancer and leukaemia. We are calling for a £30-35 million investment every year for research into brain tumours in order to fund the basic research groundwork needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.

The Brain Tumour Research charity is a powerful campaigning organisation and represents the voice of the brain tumour community across the UK. We helped establish and provide the ongoing Secretariat for the All Party Parliamentary Group for Brain Tumours (APPGBT). We are supporting the crucial APPGBT 2018 Inquiry into the economic and social impacts of brain tumours and will publish their report in the autumn. We are also a key influencer in the development strategy for the Tessa Jowell Brain Cancer Mission. 

Key statistics on brain tumours:

  • Brain tumours are indiscriminate; they can affect anyone at any age
  • Brain tumours kill more children and adults under the age of 40 than any other cancer
  • Historically, Just 1% of the national spend on cancer research has been allocated to brain tumours
  • In the UK, 16,000 people each year are diagnosed with a brain tumour
  • Brain tumours kill more children than leukaemia
  • Brain tumours kill more men under 45 than prostate cancer
  • Brain tumours kill more women under 35 than breast cancer
  • Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers

Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website. We can also provide case studies and research expertise for the media.

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