Our Response to the Timms Review of PIP
In May 2026, FEST submitted written evidence to the Timms Review of Personal Independence Payment (PIP). Our submission sets out why growth-restrictive skeletal dysplasia — a group of rare, lifelong genetic conditions — is poorly served by the current assessment system, and what needs to change.
We're sharing it here in full, alongside a plain summary of our key points. You can read the summaries below or download the complete submission as a PDF.
Why this matters
Skeletal dysplasia is far more than short stature. For many people it means lifelong chronic pain, spinal complications, fatigue and progressive joint problems — a complex medical condition that needs managing every day.
It also means living in a world built for average-sized bodies, where light switches, kitchen units, payment machines and public transport are routinely out of reach, and everyday tasks take more time and effort.
And it means navigating a social environment few others experience — staring, unsolicited comment, photography without consent and, at times, open harassment. Together, these realities shape almost every hour of the day.
The role and purpose of PIP
PIP exists to help with the extra costs of being disabled — it is not an out-of-work benefit. For many people with skeletal dysplasia, PIP is what makes work possible, funding the adaptations, equipment and transport that allow them to stay in employment.
These extra costs are real and recurring: vehicle adaptations, adapted clothing and footwear, specialist seating and furniture, home adaptations, and taxis where public transport is inaccessible or unsafe.
Our key ask: PIP should be recognised as a contribution to the extra costs of disability and as an enabler of work — never as evidence that someone cannot work.
Eligibility, fairness and equity
The assessment too often measures whether someone can do a task once, rather than whether they can do it reliably — safely, repeatedly and without disabling pain or fatigue — across a normal day.
The scoring framework is built around needing help from another person. But for many people with skeletal dysplasia, tasks get done independently, just with far more time, effort and reliance on aids. Using aids is evidence of underlying need, not a reason to score someone lower.
We're also concerned about the proposed rule requiring four points in a single activity. Skeletal dysplasia usually causes broad restriction across many activities rather than one isolated impairment, so this change would unfairly penalise our community.
Our key ask: The Review should reject the four-point single-activity threshold and recognise cumulative disability across multiple activities.
The experience of claiming
People describe having to repeatedly "prove" a lifelong genetic condition that will never improve. Repeated reassessment is exhausting and serves no one — lifelong conditions should be recognised within the "severe and long-term conditions" category.
Assessors frequently lack knowledge of rare conditions, and cultural stereotypes about dwarfism can lead to assumptions based on appearance rather than the realities of pain, reduced reach and fatigue. Lifelong adaptation can also mask genuine need, and with 65–77% of appeals upheld at tribunal, there are clear problems with how decisions are first made.
Our key ask: Assessments should be supported by specialist input, designed to be trauma-informed, and built to get decisions right first time.
What's changed since 2013
The cost of living has risen sharply, and disabled households face an average shortfall of around £630 a month between what PIP provides and the actual extra costs of disability.
Public spaces, transport and self-service machines remain inaccessible for people with restricted reach and short stature — accessibility is still too often treated as wheelchair access alone. Meanwhile, delays and cuts to the Access to Work scheme are putting jobs at risk.
Many rare skeletal dysplasias also remain statistically invisible, absorbed into catch-all coding categories that limit assessor knowledge and policy attention.
Our key ask: PIP rates should reflect the real extra costs of disability today, and the system should give rare conditions proper visibility.
"You're assessed on your appearance rather than your reality... the chronic pain, limited reach and fatigue that shape my day are rarely understood. A fair assessment has to start from knowledge of the condition, not assumptions about height."
— Adult with achondroplasia