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Our UK-wide report highlights the financial consequences of a brain tumour diagnosis

Last week, Rachel and Chris Nelson told their story about the difficulties of living on benefits after their young son was diagnosed with a brain tumour.

Last week, the story of the Nelson family was shared by the Manchester Evening News. Rachel and Chris Nelson told their story about the difficulties of living on benefits after their young son was diagnosed with a brain tumour.

They described how they had left work in order to care for him and the huge financial strain that this has had. The lack of support has resulted in them struggling to afford basic essentials such as food at times.

A member of our community told us about similar difficulties he has had in accessing benefits since his diagnosis with a high grade brain tumour in 2010.

His story reveals the rigidity of the system and the lack of understanding about brain tumours.

In 2016, he was awarded Personal Independence Payment (PIP) which replaced the Disability Living Allowance (DLA) he had been receiving.

Just over a year later he was called for a face-to-face consultation. In November 2017, the Department for Work and Pensions (DWP) informed him that he was no longer eligible for PIP despite a deterioration in his condition.

The impact of losing PIP was broad. It also meant the loss of the Disabled Persons Railcard which had made it easier to travel to appointments at the hospital. He then submitted an appeal to the HM Courts & Tribunals Service in March 2018 and won.

This is reflective of a broad trend with people being forced to appeal decisions and then having them overturned. Ian Lucas MP (Wrexham) reported in July 2018 that in his constituency over two thirds of decisions are being overturned.

Despite his appeal, he was then called for another assessment. He and his wife had to contest for this to be at home. His PIP was finally awarded earlier this month but the process has been long and difficult. This is whilst managing the daily impact of a brain tumour.

The diagnosis of a brain tumour has a devastating effect and can result in your way of life changing suddenly.

The Price You Pay

Last year, we conducted a UK-wide survey which resulted in The Price You Pay Report. The report detailed the financial consequences of a brain tumour and the challenges associated with navigating the complex benefits system.

Read the report

We found that:

  • Almost half of brain tumour patients had a bad experience with the benefits system
  • 45% found the PIP application form hard or very hard to complete, despite 60% receiving help to fill it out
  • Only 1 in 4 (27%) felt that those who assessed them for PIP understood their brain tumour during their most recent assessment

We will continue to call for adaptations to the system to be made to ensure that people diagnosed with brain tumours can access often vital support quickly.

We have a dedicated benefits clinic which offers information and supported to anyone affected by a brain tumour.