When you think about a brain tumour diagnosis you may not immediately think of money. But the cost of a brain tumour cannot be ignored.
Our recent report, The Price You Pay, saw members of our community detail the stark reality of a brain tumour on their financial stability.
Of those who contributed to the report, 8 in 10 had to stop work completely or reduce their hours due to their diagnosis. Furthermore, those caring for someone with a brain tumour also saw their working life affected, with many reporting they had to stop work completely or change their working hours to help support the family.
This has had a truly negative affect on their family income and financial security. Prior to diagnosis, 41% of respondents had a household income of £40,000 or more compared to just 17% after being diagnosed.
It is unsurprising then that 2 in 3 respondents were at least partially dependent on the income they received through benefits.
Yet, almost half of respondents reported a bad experience of the system.
“I couldn't drive for four years until I got my seizures under control. I had to change job role to be less dependent on a computer screen as this impacted my fatigue and seizures. As a result my income is almost half what it was."
Personal Independence Payment (or PIP), a benefit to help with the extra costs of a long term health condition or disability for people aged 16-64, replaces Disability Living Allowance (DLA). Though some people may continue to receive DLA until they are invited to apply for PIP.
From our report, it was noted that PIP was among the most commonly claimed of benefit options. Yet, the application, assessment and appeals process for PIP has been widely criticised.
The Government has promised some reform, such as the introduction of a light-touch review every ten years for people awarded the highest level of PIP support, where their needs are expected to stay the same or increase, intended to reduce bureaucracy and minimize stress for the individual.
But our community still faces significant challenges.
What we are doing
Our Policy Team are working on a number of goals to drive change, the following are their priorities for the next month.
Improving the information around financial help or benefits, given by healthcare professionals to those affected at the point of diagnosis.
Our report showed almost half of those diagnosed with a brain tumour did not receive any information about how to get financial help or any benefits they might be entitled to following their diagnosis. We are surveying neurosurgery centres across the country to see if staff are giving information or referring patients to organisations like The Brain Tumour Charity or Citizens Advice for advice about financial assistance.
Investigating the number of people affected by a high grade brain tumour receiving face-to-face assessment and paper reviews for PIP. Information from our benefits clinic suggests that a significant number of people affected by a high grade brain tumour are being required to complete a face-to-face assessment. The guidance that assessment providers use to deliver PIP states that there are cases which should not normally require a face-to-face assessment. This includes severe neurological conditions. We will gather more evidence to see if this is typical and ask assessors why.
Improving the level of information, guidance and training PIP assessors receive to assist them in their assessment of people affected by a brain tumour. Our report showed that 50% of respondents felt that the assessor did not understand their brain tumour. We will ask assessment providers how they intend to improve this and work with other organisations representing people with neurological conditions to make this a priority for change.
Ensuring indefinite PIP awards are available for all people with severe, complex conditions.
Simplifying of the claims process.
Improving staff training and guidance for PIP assessors.
Meet with your MP
We encourage you to meet with your MP to talk about your experience with PIP.
Your MP is elected to represent the issues that are important to you. Your MP can write to the Minister of State for Disabled People, Health and Work highlighting the problems and supporting you with specific enquiries.
The Disability Benefits Consortium have put together a step-by-step guide which explains the PIP Summer of Action campaign. The guide has handy tips such as how to arrange a meeting with your MP, how to prepare, what to expect and how to follow-up afterwards.