Less than 20% of those diagnosed with a brain tumour survive beyond five years
Widow tells her story at Westminster as brain tumour burden highlighted
A Winchester woman who lost her husband to a brain tumour has told MPs of the heavy financial burden of the disease.
Jenny Farthing, 70, was at Westminster on Tuesday 20 November to tell her story to the All-Party Parliamentary Group on brain tumours as it held its AGM. And Jenny’s poignant story is also part of the group’s new report Brain tumours – a cost too much to bear?
The report on the economic and social impacts of brain tumours is the result of a Parliamentary inquiry which received more than 200 online submissions from patients and their families and comprehensive written submissions from charities and academics. It also held oral evidence sessions during June and July from researchers, doctors, surgeons, academics, representatives of drug companies as well as brain tumour patients of all ages and their families.
Jenny’s husband Guy Farthing, a garden designer who had won eight coveted gold medals at Chelsea Flower Show, was diagnosed with an inoperable low-grade brain tumour aged 60. Guy underwent radiotherapy and chemotherapy but passed away nine years later in October 2017.
Jenny wrote: “My husband Guy had achieved such a lot with his career as a garden designer, medals at all the big shows including Chelsea and Tatton Park, and he had co-authored two books on garden design and maintenance with his father. He had just turned 60 when he was diagnosed. Nothing could have prepared us for what was to come, his steady deterioration over nine years and also the upheaval to our domestic arrangements and the financial as well as the practical challenges this brought with it.
“We incurred £50,000 in costs as we moved house to an area where there was better public transport and accessibility to hospitals. We spent around £10,000 on equipment to help Guy get around, £7,500 to make our home suitable and safe for him, lost £10,000 in deposits for holidays and so on. Fees for carers came to around £5,000 and, in order to care for Guy in his last two-and-a-half years, I had to retire early from a well-paid job. Our social life was hugely 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. We tried to entertain at home in order to get round this but often found ourselves cancelling as Guy was frequently unwell or too tired for visitors.
“During the last six months it became impossible for me to take any respite at all so I gave up my few hobbies to be with Guy as his mental capacity deteriorated and the world closed in around him. In the end it was too much for him to even understand the TV and, as his caregiver, I was making all the decisions in order to keep all the stress away from him as he simply couldn’t cope.”
The key findings of the report include:
- The incapacitating nature of a brain tumour, a cancer of the body’s most important organ, can see patients faced with an immediate financial burden and the severity of the disease all too often means people contribute less to the economy and society at large.
- Costs range from loss of income through to higher domestic bills and costly home modifications. Additionally, patients are required to surrender their driving licence, leading to a loss of independence.
- The experience of children, teenager and young adult patients is dismaying; they will experience more ‘social’ issues as the disease affects them at an important stage of their development and they have to bear its burden for the rest of their lives.
Derek Thomas MP for St Ives, who is chairman of the APPG-BT, said: “It was impossible not to have been personally affected by the wealth of emotionally compelling personal stories we heard during the course of this Inquiry and my most heartfelt thanks go to all of the brain tumour patients and their families who helped us with this report. For those of us who were privileged to hear this evidence first hand it was an experience that will stay with us for a very long time. Over the coming months and years, we will use the results of this Inquiry to keep brain tumours on the political agenda and improve outcomes for brain tumour patients.”
Sue Farrington Smith, Chief Executive of the charity Brain Tumour Research, said: “We are extremely grateful to Jenny for her courage in sharing her very personal story which demonstrates why we must continue to highlight this issue and do everything we can to improve outcomes for brain tumour patients.
“Understanding the very high ongoing costs of brain tumours is vital and the Government must find additional ways to minimise these costs. We will continue to influence and find ways to minimise this unique burden through a combination of further research funding, earlier diagnosis, additional benefits, and improved post-treatment support for brain tumour patients and their families.”
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 of 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.