Widow tells MPs of financial and social burden of brain tumour diagnosis
A grieving wife who lost her husband to a brain tumour has told a Westminster inquiry of the economic and social burden placed on their family by the harrowing disease.
Jenny Farthing, 70, from Winchester, was at Westminster on Tuesday 3rd July for the final evidence session of the All-Party Parliamentary Group on Brain Tumours (APPGBT).
Her husband Guy, a garden designer who had won eight coveted gold medals at Chelsea Flower Show, was diagnosed with a low-grade brain tumour at the age of 60. It was inoperable and Guy underwent radiotherapy and chemotherapy passing away nine years later in October 2017.
Jenny told the inquiry that in addition to the agony of Guy’s diagnosis, the couple had to bear costs of more than £30,000 in mobility aids, adaptations to their home, employing carers and lost holiday deposits. In order to care for Guy, Jenny gave up work and therefore lost her income, two-and-a-half years before his death.
She told MPs: “We had to move house to a location where the required facilities such as public transport, easy access to hospital, and ability to use a wheelchair safely were available and to a house which was easier for a disabled person to get around.
“All social activities had to be curtailed as it became more and more difficult for my husband to get out, especially when he could no longer get in and out of the car. To get around this we did a lot of entertaining but even this had to be cancelled at times due to his health and fatigue levels. I did leave him for a few hours at a time to continue some of my hobbies but these got cut back to almost zero in the last couple of months of his life.
“As Guy’s mental capacity deteriorated his world closed in around him. All he had was the TV and he found that increasingly difficult to understand. As his carer, I was making all the decisions and keeping all stress from him as he could no longer cope with it. There is a great deal of emotional and physical stress involved with caring for a brain tumour sufferer.”
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 MPs just what the real cost of a brain tumour diagnosis is. We really appreciate the courage Jenny showed in explaining her experience to the inquiry.”
Jenny 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.