Less than 20% of those diagnosed with a brain tumour survive beyond five years
Devon teen’s story heard at Westminster as brain tumour burden highlighted
A teenager who is living with complex and debilitating health conditions following life-saving treatment for a brain tumour has had her story told at Westminster.
The poignant words of Charlotte Reid’s devoted mum Angela are included in a hard-hitting report published on Tuesday 20 November, and presented to the All-Party Parliamentary Group on Brain Tumours (APPG-BT) which held its annual general meeting.
Angela, from Sidmouth, wrote: “Our daughter was just three years old when she started to experience the symptoms which would eventually lead to her brain tumour diagnosis, although she was 15 before we first heard those dreadful words. To say our lives have been turned upside down over the years would be an understatement. Charlotte, our only child, is now 18 and we have lost count of the number of hospital admissions and invasive procedures she has undergone.
“By rights she should be looking forward to an exciting future, perhaps looking at universities, starting work, or travelling with friends as she explores the world around her, finding her place in it and starting to achieve her potential. Sadly, none of these things are ever likely to be an option for Charlotte. In many ways, it is as if time has stood still. The happy-go-lucky teenager who loved fashion and make-up and enjoyed pop music slowly disappeared as the impact of six months of treatment, a necessary evil, began to reveal itself. Charlotte’s life, and ours with it, has been turned upside down by the huge and life-changing side effects of her treatment.
“Hospital appointments and admissions have become such a huge part of our lives. In the early days of course she was in paediatrics whereas we now we find ourselves in adult wards. Whilst the care we have had has always been exemplary, I sometimes do think that this transition has been particularly difficult for Charlotte who, because of her cognitive impairment and complex medical needs, is still very much a little girl. Although there is a comprehensive care package in place, so complex is Charlotte’s case that on her frequent hospital admissions, one of us has to remain with her as her advocate.”
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 Charlotte – 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 Charlotte and her family for their courage in sharing their very personal story which demonstrates why we must continue our fight 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 through a combination of further research funding, earlier diagnosis, additional benefits, and improved post-treatment support for brain tumour patients and their families.”
Brain Tumour Research holds the secretariat of the APPG-BT. If funds sustainable research at Research Centres of Excellence in the UK, including its centre at the University of Plymouth which is Europe’s leading institution for research into low-grade brain tumours, like Charlotte’s. The partnership with the university is now in its fifth year and earlier this month the charity announced that funding of over £220,000 is being granted for 2018/19, bringing the total granted to-date to over £1.2 million
In addition to funding the Centres of Excellence, Brain Tumour Research also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for an annual spend of £35m in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
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 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
- 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.