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The high price of a brain tumour diagnosis: our report out today

People living with a brain tumour need better access to financial help, we’ll tell MPs at a meeting today

People living with a brain tumour need better access to financial help, we’ll tell MPs at a meeting today

We’ve published a report showing how patients and their families are being let down by a benefits system that fails to recognise the impact of the disease.

Our survey found that eight out of ten people with a brain tumour (81%) had to stop work completely or reduce their hours after their diagnosis.

But almost half (46%) were given no information about how to access financial help or the benefits they might be entitled to.

Among those caring for brain tumour patients, more than two thirds (69%) had left work or cut their hours yet three quarters (76%) received no information about their eligibility for benefits.

Today’s report, The Price You Pay, reveals the significant financial impact of a brain tumour diagnosis.

Of those surveyed, 41% said their annual household income was at least £40,000 before they were diagnosed. After diagnosis, that figure fell to 17%.

The proportion of respondents with a household income of less than £10,000 rose from 7% before a brain tumour diagnosis to 23% afterwards.

The report highlights the ‘invisible’ side effects of a brain tumour which can make a return to work difficult or impossible, such as fatigue, depression and cognitive difficulties.

It is published during Brain Tumour Awareness Month and will be among the issues we’re discussing at Westminster later today at an event hosted by Caerphilly MP Wayne David

The Price You Pay is based on a survey of almost 300 patients and carers between September and October 2017.

We found that:

  • One in three respondents (34%) were dependent on benefits for most or all of their household income
  • Almost half (45%) of those who applied for Personal Independence Payment (PIP) found the form hard or very hard to complete
  • Almost half (48%) of those diagnosed with a brain tumour had had a bad experience of the benefits system, with one in four describing it as ‘very bad’

Cameron Miller, The Brain Tumour Charity’s Head of Policy & Public Affairs said: “We have launched The Price You Pay during Brain Tumour Awareness Month because it’s vital that we improve life today for brain tumour patients who face financial difficulty post-diagnosis.

“The report displays the difficulties that many patients and carers face, including reductions in household incomes and inadequate support through the benefits system.

“We hope that MPs who attend the event today will read our report and champion its recommendations.”

The Brain Tumour Charity operates a weekly benefits clinic offering specialist advice and support to patients and families affected by a brain tumour diagnosis.

Those who access the service are almost £5,000 better off on average afterwards.

The Price You Pay recommends that:

  • Brain tumours should be added to the list of conditions requiring additional support in the PIP assessment guide
  • The Department for Work and Pensions should ensure that PIP and ESA assessments for brain tumour patients are carried out by staff with specific training in the disease and its effects
  • The DWP should introduce accessible claim forms in a variety of formats that are readily available in locations frequented by job seekers
  • Healthcare professionals should inform newly-diagnosed patients and their carers about their potential eligibility for benefits and organisations that can provide advice
  • Healthcare professionals should advise brain tumour patients on their prescription charge entitlements at diagnosis

Read the full report