Additional statistics from our reports and publications

Find further statistics from our reports and publications, including Losing Myself, Finding Myself in Your Hands and Losing My Place.

Life with a Brain Tumour

Life with a Brain Tumour was a landmark project commissioned by The Brain Tumour Charity, aimed at exploring and documenting the impact brain tumours have on people's lives. The project was the largest of its kind to be undertaken into understanding the quality of life of those living with a brain tumour.

The first component of the project focused on adults. In total 1,004 people completed a survey questionnaire between 13 February and 13 March, 2015. Following the survey, fifteen people took part in in-depth, face-to-face interviews and a further 25 kept reflective diaries over seven days. Two reports followed titled Losing Myself: The Reality of Life with a Brain Tumour and Finding Myself in Your Hands: The Reality of Brain Tumour Treatment and Care (1,2).

The second component focused on children and young people aged 0-24 and their families. A total of 274 people (young people aged 14-24, parents or carers of children and young people aged 0-24, and bereaved parents or carers of children and young people who were diagnosed between the ages of 0 to 24) completed a survey questionnaire between 26 November 2015 and 22 January 2016. Twelve people undertook in-depth interviews and a further five kept reflective diaries over seven days. One report followed titled Losing My Place: The Reality of Childhood with a Brain Tumour (3).

This page contains further findings from the project which do not feature in the three reports. If you would like to discuss the project and our findings further please contact policy@thebraintumourcharity.org

Losing Myself / Finding Myself

  • People from low income families with a household income under £20,000 are more than twice as likely as those with a higher household income to wait a year or more between a visit to a healthcare professional and the diagnosis of a brain tumour.
  • Women are more than twice as likely as men to wait a year or more between a visit to a healthcare professional and the diagnosis of a brain tumour.
  • People affected by a low grade tumour are more likely than those with a high grade tumour to wait a year or more between a visit to a healthcare professional and the diagnosis of a brain tumour.
  • People affected by a low grade tumour are more likely than those with a high grade tumour to experience a longer period of time between the first onset of symptoms and being diagnosed with a brain tumour.
  • Good symptom management is critical to the wellbeing and quality of life of people with a brain tumour.
    • People in a low income household category are more likely than those in a high income household category to agree that they needed more support to help manage their symptoms.
    • People with a low grade tumour are more likely than those with a high grade tumour to agree that they needed more support to help manage their symptoms.
  • Access to a Clinical Nurse Specialist (CNS) makes a significant difference to an individual's experience of symptom burden, emotional and mental health and access to information.
    • Just 58% of people with a brain tumour have access to a single point of contact such as a key worker or a Clinical Nurse Specialist. Access is more difficult for people with a low grade tumour – just over half have access compared with three quarters of people with a high grade tumour.
    • People affected by a brain tumour who have access to a Clinical Nurse Specialist or other single point of contact are almost twice as likely as those without to say that their brain tumour had has no impact at all on their emotional or mental health.
    • Access to a Clinical Nurse Specialist affects an individual's view that healthcare professionals they talk to understand brain tumours and what life is like with a brain tumour.
  • The financial cost of a brain tumour can be severe and a loss or reduction in income is common. More than 4 in 10 people affected by a brain tumour give up work entirely and in around 20% of cases a partner has to give up work entirely or reduce hours to deliver care.
  • 44% of people affected by a brain tumour have to reassess educational or career aspirations and 42% of those in education have to take leave because of their condition.
  • The symptoms of a brain tumour and treatment are life changing, yet 43% of people affected by a brain tumour do not have access to vital support services such as an occupational therapist, psychologist or speech and language therapist.
  • Information regarding the implications of treatment, such as the potential benefits and drawbacks of treatment and its long term side effects is essential for people affected by a brain tumour. Unfortunately, people from low income families with a household income under £20,000 are less likely than those in higher household income categories to be provided with sufficient information and explanation of potential impact.
  • More than a third of people affected by a brain tumour are not given a choice of relevant treatments and this is more likely in the case of people with a terminal prognosis.

View the full Losing Myself report.

View the full Finding Myself in Your Hands report.

Losing My Place

  • More than a quarter of children and young people wait for more than a year between the first time they experience symptoms and diagnosis.
  • Girls and young women are more likely than boys and young men to wait for over a year between a visit to a healthcare professional and the diagnosis of a brain tumour.
  • More than a third of children and young people visit a healthcare professional more than 5 times before they receive their diagnosis of a brain tumour.
  • Access to a CNS makes a significant difference to an individual's experience of symptom burden, emotional and mental health and access to information.
  • More than a third of young people and parents of young people with a brain tumour don't have access to a single point of contact such as a key worker or a clinical nurse specialist.
  • Support and information is essential to help manage a brain tumour and improve quality of life, yet for a significant number of young people these needs are not met. Nearly half feel they need more support for symptom management, for example physiotherapy and psychology services.
  • Treatments are limited for children and young people with a brain tumour. Around half of children and young people with a brain tumour will not be given a choice of treatments because only one type of treatment is suitable for their condition.
  • Around half of young people or parents of young people feel that they or their child cannot live as independently as other people their age.

View the full Losing My Place report.