Less than 20% of those diagnosed with a brain tumour survive beyond five years
Teenager’s story heard at Westminster as MPs learn of brain tumour burden
A teenager who was diagnosed with a brain tumour while studying for her A levels has had her story told at Westminster.
Flora Bouchier, from Thornborough, was a student at the Royal Latin School in Buckingham when she received the shocking news. Now, three years later and in the second year of a chemical engineering degree at the University of Nottingham, Flora’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).
Flora, aged 19, wrote: “In September 2015, I started experiencing strange feelings of nausea, hot flushes and partial seizures, but it wasn’t until five months later when I had a tonic-clonic seizure that I was diagnosed with a low-grade brain tumour.
“The seizures kept increasing and the medication was not helping. The initial course of action was to ‘watch and wait’ but as the epilepsy was getting worse and daily life was becoming more and more difficult, I decided to have surgery to remove the tumour.
“Although the surgery went well, it was the aftermath that took its toll on me. I was always tired and suffered from post-operative depression. I would get upset for no obvious reason and cry all the time. Even when I returned to school, I would sit in class and suddenly become emotional; I found that many people don’t realise the full impact of brain surgery and it was difficult to communicate the complexity of the issues I was dealing with.
“I often thought how unfair my situation was; I had always been very healthy and sporty, never ill, and I was only 16. The diagnosis and surgery had a huge impact on my studies too. I have always had high expectations of myself and just want to do my best, so it was especially difficult that this was all happening while I was studying for my A levels. Sometimes, I would get confused or lost for words. As a result of that and my tiredness, my grades dropped and my overall academic performance worsened, which was particularly traumatic for me as I was used to being an A* student.”
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 – like Flora – 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 Flora 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:
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.