Have you been diagnosed with a brain tumour? Order your free information pack.

Delivering equal access to benefits for brain tumour patients

Over the last three years, The Brain Tumour Charity has expressed concerns about the assessment criteria used for Personal Independence Payments (PIPs), and their impact on people affected by a brain tumour.

Since our Benefits and Money Clinic launched in 2016, 54% of calls have related to PIPs, with many brain tumour patients telling us that their claim has been rejected despite having a diagnosis which is associated with cognitive difficulties and affects their capacity to work.

The diagnosis of a brain tumour has a significant impact on the ability of those affected, and their loved ones, to remain in or return to employment.

Losing Myself: The Reality of Life with a Brain Tumour showed that out of people with a brain tumour, 3 in 5 said that they experienced fatigue, and 1 in 4 experience cognitive problems, symptoms which may not be visible in a face-to-face benefits assessment.

At present, there are significant problems for navigating the PIP application process, with many healthcare professionals lacking the knowledge or qualifications to assess certain fluctuating conditions or communicate with individuals who have cognitive or speech problems.

This is why we have long campaigned for brain tumour patients to be included in the list of health conditions requiring additional support needs within the PIP Assessment Guide.

At present, conditions covered under this criteria includes dementia and other mental health conditions like severe depression which have an impact on cognitive impairment and mental capacity.

Adding brain tumours to this list would send a clear signal to assessors that individual with such a diagnosis is very likely to have reduced cognitive function, requiring extra financial support.

It would reduce the chance of assessors declaring a brain tumour patient as being fit to work when they lack mental capacity or memory, and then seeing this decision overturned through a Mandatory Reconsideration or a tribunal.

We have pressed the Department for Work and Pensions for clarity on why brain tumours are not included in this list of conditions in the PIP assessment guide.

The MP Martyn Day recently tabled a question, asking the Secretary of State for Work and Pensions “…for what reasons brain tumours are not included in the list of health conditions requiring additional support needs in the most recent Personal Independence Payment Assessment guide.”

In response, the Minister for Disabled People, Health and Work, Penny Mordaunt MP replied that, “The guidance would not preclude someone with a brain tumour from being considered for additional support if the tumour gave rise to a lack of mental incapacity or insight.”

There are a number of unanswered questions not addressed by the Government’s response.

Firstly, it is not clear what extent of mental incapacity or insight would make a person with a brain tumour eligible for additional support. Through our Benefits Clinic, we are aware of cases where a person has highlighted how their cognitive function has been reduced, but seen their claim rejected on the grounds that they appear to function within normal limits and have some insight into their condition.

It is unacceptable that vulnerable people, including those affected by serious medical conditions like brain tumours, face serious challenges in navigating the PIP application process due to a lack of understanding about symptoms and additional needs.

Both the DWP and contractors who deliver PIP assessments need to better engage with health or social care charities to understand more about the type of conditions that applicants are diagnosed with, and how it affects their daily lives.

Secondly, it is not clear whether healthcare professionals assessing a claim have discretion to accept information from a carer or friend who may be present with a brain tumour patient at a face-to-face assessment.

Our research has shown that 1 in 5 brain tumour patients report speech and/or hearing problems as a result of their tumour or treatment, which means that it is very difficult for them to communicate how their condition affects them on a daily basis.

Testimony in our Losing Myself report highlighted the strong value that people living with a brain tumour place on their employment, particularly among individuals whose tumour had limited or terminated their capacity to function professionally.

But it is also crucial that where brain tumour patients are unable to work due to mental incapacity or any other symptoms, they are able to access disability benefits to help supplement their loss of income from employment.

Going forward, we will continue to lobby the Department for Work and Pensions to address the issues that brain tumour patients face in the application process for Personal Independence Payments and other disability benefits.

Your voice matters

By campaigning with The Brain Tumour Charity, you can help ensure the issues which affect the brain tumour community remain a political priority.