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The Price You Pay: The Financial Impact of a Brain Tumour

Our Life with a Brain Tumour publications detail the physical, mental and emotional impact of a brain tumour. Now, we’re launching a new report in the series – The Price You Pay.

We conducted a survey to understand more about the financial impact of having a brain tumour and the experience of those affected in navigating the benefits system across the UK.

Highlighting the financial impact of a diagnosis and the inadequate levels of information and support available, we’re calling for changes, so everyone can get the financial help they’re entitled to.

The Price You Pay: the Financial Impact of a Brain Tumour, was created with the help of 300 people, including those personally affected, and we are so grateful for your input.

Your stories and experiences will help us drive change so that, one day, the cost of a brain tumour won’t be so high.

The report has made shocking discoveries, highlighting the serious impact of a brain tumour diagnosis on personal finances and the ability to work – for both the patient, and their loved ones.

For instance, the report found that:

  • 8 in 10 brain tumour patients had to stop work completely or reduce their hours due to a brain tumour diagnosis.
  • Over two-thirds of those caring for people with a brain tumour have had to stop work completely or reduce their hours of work.
  • 1 in 3 respondents said that they depended on benefits for most or all of their household income.

Our Benefits Clinic provides information about financial support and benefits that people affected by a brain tumour might be entitled to. Patients and carers who receive specialist advice and support from the clinic are, on average, nearly £5,000 better off as a result.

It has also highlighted some serious barriers that brain tumour patients face in navigating the benefits system across the UK, both in the assessment and application process.

For example:

  • Almost half of respondents reported a bad experience of the benefits system, with 1 in 4 stating that their experience was very bad.

People affected by a brain tumour should be well supported in their application for benefits. This includes access to information, easy-to-fill-in forms, transparent assessment processes and an understanding of the complex nature of the condition. Our report details our recommendations to improve the process, and will be used to drive forward change in this area.

The Price You Pay; the Financial Impact of a Brain Tumour – PDF

This report makes a series of recommendations to politicians, healthcare professionals and benefits assessors which we believe will transform the experience of those affected for the good.