Less than 20% of those diagnosed with a brain tumour survive beyond five years
Norwich pensioner remembered as daughter tells MPs of brain tumour diagnosis
A grandma from Drayton, who was lost to a brain tumour, was remembered at Westminster as her daughter told MPs of the economic and social burden placed on their family by the harrowing disease.
Paula Wassenaar, who had travelled the world in her career as a teacher with Royal Dutch Shell, was diagnosed with a glioblastoma multiforme, a highly aggressive type of brain tumour, in March last year. Originally told she would live for just a matter of weeks, Paula survived for six months and died in September 2017, at the age of 81, at a nursing home in Hellesdon.
Paula’s daughter, Ingrid Wassenaar, from Muswell Hill, was at Westminster on Tuesday 3rd July for the final evidence session of an All-Party Parliamentary Group on Brain Tumours (APPG). Ingrid, aged 50, and her brother Pierre found themselves facing serious financial issues as well as coping with the shock of the diagnosis and the harrowing effects of the disease.
Ingrid, a tutor and former university lecturer, told the inquiry: “We were still reeling from Mum’s diagnosis and prognosis, when we found ourselves standing in hospital corridors, being told there was no possibility of a hospice place for our mother. Her financial situation meant that the only NHS hospice in the area was not available to her. 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 need, but it simply wasn’t available.
“Although mum was unable even to walk to the toilet and had lost the use of her left hand, she was not deemed eligible for financial support when she was discharged. She was expected to pay nursing home fees of £4,000 a month. Thank goodness she had a widow’s pension which covered the fees – they would have bankrupted my brother and I. The extortionate hospital parking charges were just the tip of the iceberg.
“I stopped work to be with mum and so started to struggle financially. My brother and I managed to solve money problems as we went along, but they nevertheless caused a great deal of stress and upset and continue to do so. It has taken time to rebuild my work as a tutor in the wake of mum’s death and money has continued to be a worry until quite recently.”
Carrie Hume, Head of Public Affairs at the Brain Tumour Research charity, explained that “Too often the shock of a brain tumour diagnosis is compounded by loss of income, loss of a driving licence, loss of independence and ensuing financial insecurity. We need to spell out to MP’s just what the real cost of a brain tumour diagnosis is. We really appreciate the courage Ingrid showed in explaining her experience to the inquiry.”
Ingrid was among 200 people who gave written submissions to the inquiry and one of 23 people including patients, relatives, charity representatives, scientists and clinicians, who spoke to the panel.
The APPGBT Inquiry report, and its formal recommendations to Government, are currently in the process of being drafted and are due to be published in late 2018.
For further information, please contact:
Susan Castle-Smith at Brain Tumour Research on 01908 867206 or 07887 241639 Susan@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
- 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.