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.

Thursday, 22nd November 2018, 9:17 am
Updated Thursday, 22nd November 2018, 9:22 am
Flora Bouchier, from Thornborough

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 yesterday, Tuesday 20 November, and presented to the All-Party Parliamentary Group on Brain Tumours (APPG-BT) during their meeting that evening.

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.

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Sue Farrington Smith with Derek Thomas MP for St Ives

“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.”