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Less than 20% of those diagnosed with a brain tumour survive beyond five years

Malvern patient’s story heard at Westminster as MPs learn of brain tumour burden

Malvern patient’s story heard at Westminster as MPs learn of brain tumour burden

A Malvern man with an incurable brain tumour will have his story told at Westminster.

Ben Lindon, 39, was diagnosed with a brain tumour at the age of 29 and underwent surgery and chemotherapy. A recent deterioration in his condition means he had to move into sheltered housing in Ledbury and is relying on a wheelchair and a mobility scooter to get around while he undergoes rehabilitation.

Ben’s experience is included in a hard-hitting report published today, Tuesday 20 November, and presented to the All-Party Parliamentary Group on Brain Tumours (APPG-BT).

Ben, aged 39, wrote: “The impact of having a brain tumour has been enormous and has cost me tens of thousands in lost income over the 10 years since my diagnosis, aged 29. I went from having an exciting career as a journalist, to having to retrain as a self-employed tree surgeon because no one wants to employ someone with a brain tumour. I then had to pack in that job as my seizures made me unfit to work. After that I worked part-time in HMV and then relied on benefits. Of course, living on benefits doesn’t bring in anything like the same money as I earned as a tree surgeon.

“It has been a huge struggle to provide for my family and I have had to totally give up my plans of buying a house.

“I have had more than 120 cycles of chemotherapy and continue to care for my two ‘miracle children’ who were born after I was told my chemotherapy treatment would make me infertile.  However, I now have to rely on another member of the family being with me or pay to have additional support.

“My condition has deteriorated further lately and I haven’t been able to work at all for more than a year, being currently reliant on a wheelchair and a mobility scooter to get around. For some months, I have been waiting for a bed in a specialist hospital to give me neurological physiotherapy as part of my rehabilitation. In the meantime, because I was unable to access my home, I am having to live in sheltered housing alongside old-age pensioners as I couldn’t find any suitable housing provision locally for people of my age who have disabilities. It can get quite lonely as I have had to move away from my home town and don’t get to see my children or my friends as often as I would like.”

Brain tumours – a cost too much to bear? is the report of a Parliamentary inquiry into the economic and social impacts of brain tumours 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.

Its key findings 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 Ben for his courage in sharing his 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:
Liz Fussey at Brain Tumour Research 07811 068357 or 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 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.

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