Sidmouth teen's story heard at Westminster as brain tumour burden highlighted
PUBLISHED: 07:00 01 December 2018
Brain Tumour Research.
The poignant story of a Sidmouth teenager, who had to have life-saving treatment for a brain tumour, has been shared in Westminster.
The words of Charlotte Reid’s devoted mum Angela were included in a hard-hitting report which was presented to the All-Party Parliamentary Group on Brain Tumours.
Brain tumours – a cost too much to bear? is a part of a Parliamentary inquiry into the economic and social impacts of brain tumours.
It received more than 200 online submissions from patients and their families and comprehensive written submissions from charities and academics.
Researchers, doctors, surgeons, academics, representatives of drug companies as well as brain tumour patients of all ages and their families provided evidence.
A statement from Angela spoke about living with the complex and debilitating health conditions following treatment.
She 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.”
The report’s 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.
Sue Farrington Smith, Brain Tumour Research’s chief executive, 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.”
The charity helps fund research into low-grade brain tumours, like Charlotte’s.
It 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 £35 million to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
Visit www.braintumourresearch.org for more information.