Patient reveals devastating cost of brain tumour diagnosis. New report from the Brain Tumour Research charity highlights punishing financial burden - Brian Rockell
A patient hit by the devastation of a brain tumour diagnosis has welcomed a new report exposing the punishing financial burden of the disease.
Brian Rockell, 70, from Hastings, was diagnosed with a glioblastoma multiforme – a highly aggressive type of tumour – in March 2016. Brian, whose eyesight and hearing has deteriorated, relies on his wife Fay to care for him. She gave up her job as a teacher, which dramatically reduced their income, and they face regular trips to and from hospital appointments, with mounting costs of parking. In addition, high travel insurance premiums mean that going on holiday to escape it all is a distant dream.
Brian, a retired director at St John Ambulance, said: “My wife gave up her work as a teacher to care for me. Now, over two years on, I still need a lot of help and even survivorship has a huge mental health impact and I can no longer do many things, I once enjoyed. I try to support others suffering the same diagnosis, instead of my former very active life. Additionally, we have significant regular travel costs to attend appointments 40 miles away. I calculate the financial cost of my brain tumour diagnosis to be around £50,000 net to date.
“After my diagnosis, I was transferred to the Royal Sussex County Hospital for surgery to remove as much of the tumour as possible. Looking back, the surgery was the easy part. I had no idea then how much support I would need as a patient and how different my life was about to become after the diagnosis of right temporal glioblastoma, a rare and incurable brain cancer.”
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:
Annie Slinn at the Brain Tumour Research charity on 01908 867239 or 07591 206545 or firstname.lastname@example.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.