"It's got to start with dignity and respect": A fairer PIP
Over six months, people with MS shared what it's like trying to access PIP and what needs to change. Together, we've come up with recommendations on how to fix PIP and what needs to change.
For many people with MS, Personal Independence Payment (PIP) is what makes everyday independence possible.
It helps cover the extra costs of living with a fluctuating, debilitating and often invisible condition. From mobility aids, to support with daily tasks like getting washed and dressed, preparing food, or getting out of the house.
But too often, the system doesn’t reflect the reality of living with MS. When it fails, people are left without the support they need to manage daily life. This has real consequences for their independence, health and wellbeing.
People with MS are to often forced to fight to be understood. Repeatedly asked to prove the impact of their condition to access support they’re entitled to.
"It's almost like being charged with a crime or being told to defend yourself. Or there's something you've done wrong. If you think about it, that's not how it should feel, but that’s how you're made to feel. Like you're trying to scrounge." - Person with MS
The UK Government’s PIP Review, also called the Timms Review, is a vital opportunity to fix the system. Shaped by people’s experience of living with MS.
The problems with PIP faced by people with MS
We’ve worked with people living with MS to come up with our recommendations for how the UK Government can fix PIP.
Four consistent issues emerged from our interviews and co-production workshops:
1. Lack of recognition of fluctuating, invisible symptoms
People describe MS as unpredictable, with symptoms changing from day to day or even within the same day. Yet the PIP assessment struggles to reflect this, often relying on fixed responses that do not capture real-world functioning over time.
People often feel their lived experience is reduced to snapshots that miss the wider pattern of their condition. In particular, cumulative risk, pain, and symptom exacerbation over time are not captured. If someone has an impairment for less than half of the time, its impact is ignored. It’s a rigid, arbitrary way to judge fluctuation that doesn’t capture how MS affects people.
“With MS, my symptoms fluctuate a lot. I might be able to do something one day, but then fatigue will kick in and the next day I can’t.” - Rob
There’s visibility discrimination - if they can’t see it, it’s not believed.
“Things change by the minute, by the hour, by the day.” - Ophelia
2. Mobility assessment not fit for purpose
How PIP assesses mobility is a major issue for people with MS. The PIP assessment fails to capture the reality of someone’s mobility and how that affects their day-to-day life. The ‘20-metre rule’ is particularly hard to justify.
It shuts people out of mobility support, even when their mobility is severely compromised and has extra costs to manage. Setting a punitive cliff edge for mobility support on such a short distance doesn’t reflect the real-world challenges that people with MS face.
You might be able to walk it, but the brain power it takes to do even a very short distance is enormous - and then there are the after-effects.
“Although the bus stop is only about 500 meters from my house, I could in extreme circumstances get myself over there. And then I could catch a bus that would take me into town, but I couldn't get the bus back because it'd be at the other side of the road and it's a busy main road where I would struggle to get across.” - Russell
3. Unnecessary reassessments
Compulsory reassessments (otherwise known as Award Reviews) are widely described as distressing for people with MS. Given that MS is a lifelong and progressive condition, many question the logic of repeatedly reassessing support that is unlikely to change.
Reassessing people with MS is inappropriate and inefficient. It risks people unfairly losing the support they need, and having to appeal - wasting time and money.
“It’s not as if any of us are suddenly going to get better, it’s a lifelong and life limiting disease.” - Person with MS
“I do think that they should just change the [reassessment] criteria for neurological progressive conditions, that you know won’t get better. It just seems it’s just adding stress.” - Person with MS
4. Unsupportive and emotionally distressing process
People with MS describe the PIP process as sceptical rather than supportive. People say they feel they have to justify or defend their condition and are misunderstood.
At the assessment, it felt like I was on trial.
“It just makes you feel diminished. It makes you feel like a liar.” - Sian
This experience contributes to significant emotional distress, including feelings of humiliation, and anxiety. Some people report that the assessment process is exhausting and worsened their MS symptoms.
Changes to PIP for people with MS
We're calling for a fairer PIP system that:
- better recognises fluctuating conditions
- improves how mobility is assessed
- ends unnecessary reassessments
- ensures decisions are made with fairness, dignity, and respect
To fix PIP for people with MS, the UK Government must:
Introduce new core principles that embed fairness, dignity, respect, consistency and transparency across every stage of the PIP process.
The assessment process should feel supportive rather than adversarial. Decisions must be clear, consistent and based on reliable evidence. People with MS should be treated with dignity and believed when explaining how their condition affects everyday life.
An improved and fairer PIP process must include:
- assessments that are person-centred and focused on understanding how MS affects daily life
- communication that is clear, accessible and transparent throughout the process
- decisions that properly consider evidence from healthcare professionals and lived experience
- improved assessor training and stronger quality assurance processes
- recording assessments as standard on an opt-out basis
- ending the culture of mistrust and trying to “catch people out” during assessments
Introduce a flexible, person-centred approach that captures the reality of living with fluctuating and invisible symptoms. And end inaccurate informal observations.
PIP must move away from the rigid 50% rule used to assess fluctuation, toward a more flexible, real-world assessment of how symptoms affect people over time. The system should better assess whether activities can be carried out safely, reliably and sustainably. It should include assessing the impact, recovery time and if symptoms get worse after completing everyday tasks.
New assessment crieria should include:
- expanding the reliability criteria to properly assess risk, pain, fatigue, recovery time and symptom exacerbation
- assessing whether activities can be completed consistently and in real-world conditions over time
- embedding reliability criteria directly into assessment descriptors rather than relying on snapshot observations
- ending the overreliance on informal observations that can wrongly undermine people’s evidence
Scrap the arbitrary 20 metre rule and replace it with an assessment based on whether people can complete essential daily tasks and live independently. The assessment should better reflect the real-world challenges people with MS face when moving around. It should include assessing fatigue, pain, cognitive difficulties and the cumulative impact on mobility over time.
New mobility assessment criteria should include:
- replacing fixed distance measures with assessments based on real-life independence and daily activities
- considering whether someone can safely and sustainably access essential places like shops, appointments or public transport
- better recognising the impact of fatigue, pain, cognition and symptom fluctuation on mobility
- improving how journey planning and following journeys are assessed, including the impact of fatigue and cognitive symptoms
- ensuring mobility assessments reflect the reality and after-effects of movement, not just what someone can do in a single moment
Offer lifetime awards as default for people living with long-term, progressive conditions like MS. Instead, replace compulsory reassessments with light-touch check-ins and stopping reassessments for those with MS on the highest awards. People with MS should not have to repeatedly prove the impact of a life-long condition through stressful and unnecessary reassessment processes.
Unnecessary reassessments should be replaced with:
- ongoing or lifetime awards for long-term, progressive conditions like MS
- simple light-touch check-ins every five years instead of full reassessments
There should also be:
- no reassessments for people with MS on the highest rates of PIP
- a move towards paper-based assessments for people with conditions like MS
Sign our petition to fix PIP
We are calling for a fundamental redesign of PIP so that it better reflects the reality of living with MS and consistently treats people with dignity, fairness, and respect.
“It’s got to start off with dignity and respect – we shouldn’t feel interrogated and communication should be respectful and accessible.” - Rachael
Add your name today and tell the UK Government that it’s time to fix PIP.
Need support?
If you want emotional support or have practical questions about benefits at the moment, our MS Help team are here for you. You can call us on 0808 800 8000 or email [email protected].
