From reduced income to the often-unseen costs of daily life with a life-limiting illness, the financial impact of brain tumour diagnosis quickly adds up. Financial support from the government – including Personal Independence Payment (PIP) – is therefore vital for many families in the brain tumour community.
That’s why we’ve united with 12 other leading cancer charities to write to Sir Stephen Timms and the co-chairs of the Timms Review into PIP to share what we’d like the system to look like for people facing cancer and other serious long-term health conditions.
We’ve also submitted evidence to the Timms Review highlighting the vast unmet need for brain tumours.
What is PIP?
Personal Independence Payments (PIP) is a disability benefit for those aged 16-65. It’s payable when someone has a long-term health condition or disability.
You become eligible for PIP if you need help with everyday tasks (called Daily Living) or getting around (called mobility), have needed this help for three months and expect to need it for another nine months.
What is the Timm’s Review into PIP?
In 2025, the government published a consultation document (a Green Paper) outlining broad changes to the welfare system (you can read our response to that consultation here). Since then, the Timm’s Review was launched to directly shape how PIP assessments and eligibility will function in the reformed system.
The Timms Review into PIP is an official government review of PIP that is looking at:
- How PIP supports disabled people today and what might need to change to support disabled people in the future.
- How well the eligibility criteria captures the impacts of people’s conditions for both the Daily Living and Mobility elements of PIP.
- What – if any – other evidence should be considered alongside the assessment.
- How PIP can provide the right amount of support at the right time.
- How PIP gives people access to wider support, for example, a Blue Badge or the Motability scheme.
- How other changes to disability benefits – for example, plans to scrap the Work Capability Assessment in 2028 – will impact PIP.
It’s important to note that no changes will be made to PIP until the Timms Review is completed.
Why is this important to the brain tumour community?
In The Cost of a Brain Tumour: The Urgent Case for Economic Action, we looked at the financial impact of a year’s worth of new brain tumour diagnoses in a year (around 12,700).
We estimated that the lifetime financial costs to these families totalled around £5.17 billion. This included reduced income, additional welfare needs, loss of independence, personal costs of treatment and unpaid care.
That’s an average lifetime cost of around £400,000 for each family affected by a brain tumour.
When speaking to people in the community, we heard the PIP was a vital means of support for these families. 63% of the people we surveyed said that losing PIP would have a severe impact on their lives.
But we also heard that the process of applying for that support and actually receiving PIP is complicated, time consuming and often unfair:
“I applied in August and got the first payment in December.”
“It took more than half a year for my disability payment to be processed.”
“The current PIP system focuses too heavily on whether someone can physically complete a task, rather than the impact it has afterwards.”
Our colleagues at Young Lives vs Cancer found that children and young people with cancer wait an average of eight months before they receive their first PIP payment. Even though they face extra costs of £700 every month from the point of diagnosis. We know that young people in the brain tumour community have faced these issues.
Sending a response on behalf of the brain tumour community
As part of the Timms Review, the government have called for organisations representing people with disabilities to submit evidence.
Our response combined research from The Cost of a Brain Tumour: The Urgent Case for Economic Action and further evidence gathered from people affected by brain tumours on their experiences with PIP.
We stressed that rather than being an additional luxury, PIP was a lifeline for people in the brain tumour community. We highlighted the vital role it played in helping you meet the costs of a life-changing diagnosis, supporting your independence, enabling access to care and appointments, and maintaining family, work and community life where possible.
Uniting across the sector
In coming together with 12 other leading cancer charities, we’ve been clear that any reform to PIP needs to meet the real, complex needs of people with serious health conditions like cancer.
In the open letter, we’ve supported three vital points that we’re urging the government to prioritise in the Timms Review:
- Adapting the criteria for PIP to better reflect the complex, individualised needs of people living with disabilities and long-term health conditions.
- Taking steps to ease the administrative burden of a PIP application for people facing life-changing diagnoses and intensive treatments.
- Making the PIP assessment and evidence-gathering processes fairer and more accessible for patients with serious health conditions and disabilities.
We want to thank our colleagues at the following charities backing this urgent message to the government – Anthony Nolan, Blood Cancer UK, Bone Cancer Research Trust, Brain Tumour Research, Kidney Cancer UK, Leukaemia Care, Maggie’s, Neuroendocrine Cancer UK, Salivary Gland Cancer UK, Shine Cancer Support, Young Lives vs Cancer and Young Tongues.
Eight key recommendations to improving PIP for people affected by brain tumours
In our response, we outlined eight key recommendations for the review to take on board:
- Protect access to PIP for people with serious, complex and fluctuating conditions, including people affected by both high-grade and low-grade brain tumours who experience long term functional impairment.
- Ensure assessment criteria properly recognise neurological, cognitive and invisible symptoms and treatment side effects, including fatigue, memory loss, seizures, communication difficulties and fluctuating capacity.
- Assessment processes should focus on the functional impact of a condition, rather than relying too heavily on diagnostic labels or assumptions around prognosis alone.
- Place greater weight on clinical evidence and lived experience, rather than relying too heavily on standardised functional descriptors.
- Reduce unnecessary reassessments for people with long-term, progressive or life-limiting conditions.
- Simplify and accelerate access to support for people affected by brain tumours that cause severe, life-limiting or long-term functional impairment, including consideration of fast-tracked or reduced-assessment routes where appropriate.
- Ensure assessment routes are accessible, with options for remote assessments, recorded assessments and support for people with cognitive, visual or fatigue-related barriers.
- Recognise PIP as a tool for independence, dignity and participation, including where it enables people to remain in work, education or family life.