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

Paula Wassenaar of Norwich was diagnosed with an aggressive glioblastoma brain tumour and, knowing she would die within months, not years, chose not to have chemotherapy and radiotherapy, so the only treatments available were palliative. Two weeks after her diagnosis, Paula was bed-bound in hospital, unable to walk. She passed away six months later in September 2017.

Her daughter, Ingrid Wassenaar said: “I had to go through the routine of hunting for change to pay the mounting hospital car parking charges and ask my brother’s permission to use Mum’s money to pay for petrol to drive from London, where I live, to Addenbrooke’s Hospital and also to Norwich. 

“Mum’s financial situation meant that she wasn’t eligible for the NHS hospice in the area, but no alternatives existed able to offer the appropriate care. Instead she was left with no option but to go to a non-specialised nursing home, paying huge fees. We knew that a hospice, with palliative facilities, would have been far better placed to meet her needs, but it was heart-breaking to find that it was simply not available. Mum had to pay £4,000 a month to go to a nursing home. The carers as individuals were wonderful, but the home was understaffed and could only offer very general end-of-life care. I had to give up my job as a teacher to help care for her in the home. It was soul-destroying that she didn’t have the palliative care she deserved.”

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