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DEADLINE TOMORROW
Read on to learn more and respond here:
https://www.gov.uk/government/calls-for-evidence/timms-review-of-personal-independence-payment-call-for-evidence/timms-review-of-personal-independence-payment-call-for-evidence
Neuroendocrine Cancer UK (NCUK) is proud to stand alongside fellow cancer charities in calling for a fairer, more compassionate Personal Independence Payment (PIP) system, as part of the Government’s Timms Review.
We are working alongside:
Young Lives vs Cancer, Anthony Nolan, Bone Cancer Research Trust, Leukaemia Care, Salivary Gland Cancer UK, Brain Tumour Research, Maggie’s, Kidney Cancer UK, Shine Cancer Support, The Brain Tumour Charity, Young Tongues, and Blood Cancer UK, to ensure the voices of people living with cancer are fully recognised.
https://www.younglivesvscancer.org.uk/uk-news/open-letter-pip-timms-review/
Why this matters for neuroendocrine cancer:
Neuroendocrine cancers include two main types:
- Neuroendocrine carcinomas (NEC)
- Neuroendocrine tumours (NET)
While both are cancers of the neuroendocrine system, they can affect people very differently.
People living with NEC often experience a more aggressive disease and treatment pathway, similar to what many people expect when they think of cancer.
In contrast, people living with NETs often face a very different reality. NETs are typically:
- Long-term, often lifelong conditions
- Complex, affecting multiple systems in the body
- Associated with symptoms that can fluctuate day to day
- Frequently invisible, despite having a profound impact
This distinction is critical — because current PIP assessments do not consistently reflect either experience well.
What we are hearing from our community:
At NCUK, we hear every day from people who:
- Struggle to evidence their needs because symptoms vary or are not visible
- Feel their rare cancer is not understood within the assessment process
- Are asked to “prove” limitations despite clear clinical evidence
- Experience distress when their condition is minimised or misunderstood
This includes:
- Individuals with advanced disease being challenged on mobility despite clinical need
- People living with long-term NETs managing fatigue, digestive disruption, and hormonal symptoms
- Those continuing to work where possible, but feeling penalised for doing so
For many, the issue is not whether they are unwell — but whether the system is able to recognise how that illness affects daily life consistently and fairly.
Our shared concerns:
Alongside our partner charities, we are concerned that proposed changes to PIP risk:
- Excluding people with cancer who do not meet rigid thresholds on a single day
- Disadvantaging those with fluctuating or invisible conditions
- Penalising people who strive to remain independent or in work
- Increasing stress during an already challenging time
For people living with neuroendocrine cancer, PIP is not optional — it is essential support that helps them manage the real financial and practical impact of living with cancer.
Have your say – DEADLINE TOMORROW:
The Timms Review is a critical opportunity to shape a PIP system that reflects modern cancer care and lived experience.
The deadline for submissions is 23:59 tomorrow 28th May 2026
We strongly encourage:
- people living with neuroendocrine cancer
- carers and families
- clinicians and professionals
to share their experiences.
#NeuroendocrineCancer #PIP #CancerPolicy #RareDisease #HiddenDisability #TimmsReview #CancerSupport #HealthInequality
