Finding Myself in Your Hands: The Reality of Brain Tumour Treatment and Care

29 people are diagnosed with a brain tumour every day and to help us reach our goal of halving the harm for those affected, we've made it our priority to ensure equal access to the best treatment and care. It's for this reason that we've commissioned research into what life is really like for adults living with a brain tumour and what their experience of NHS treatment and care has been.

Finding Myself in Your Hands: The Reality of Brain Tumour Treatment and Care is the sister report to Losing Myself: The Reality of Life with a Brain Tumour which outlines the day-to-day struggles faced by those affected. Finding Myself in Your Hands focuses specifically on peoples interactions with the NHS, healthcare professionals and their treatment, and gives us an honest insight into experiences across the UK.

Finding Myself in Your Hands is the most comprehensive study of its kind and draws on the same survey of over 1,000 people affected by a brain tumour as used for the Losing Myself report. Respondents included people affected by high grade and low grade tumours. The findings within this report sadly mirror those from NHS cancer patient experience surveys (which only survey high grade patients); although some aspects of treatment and care are positive for some respondents, many of those with a brain tumour report a poor experience:

  • 31% visited a healthcare professional five or more times prior to diagnosis
  • People with a high grade tumour were more likely to say they have a single point of contact than those with a low grade tumour
  • 55% of terminal patients said they had not been given end-of-life care options

In the report, we make a number of recommendations to politicians to improve diagnosis, support and data collection. We will use this as a basis for our discussions with policy makers over the next year or so as part of our work to improve the NHS experience for people with a brain tumour.

The report contains content that some readers may find distressing.