Four ways the government could change PIP for the better

Dehumanising, demoralising, draining. These are just some of the words that people with multiple sclerosis (MS) have used to describe applying for personal independence payment (PIP). PIP is there to help disabled people afford the vital support they need to live their everyday life. 

But PIP is broken. It’s failing people with MS, putting them at risk of losing their independence and the essentials they need.

MS is a neurological condition that affects more than 150,000 people in the UK. Symptoms are unpredictable and different for everyone, and people often face unavoidable extra costs like paying for visits from carers to help them get dressed, or a mobility aid so they can leave the house.

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For 13 long years, we’ve campaigned alongside the MS community to fix PIP. And finally, the Timms Review of PIP presents an opportunity for genuine reform. We now have a chance to create a new system, built on fairness, dignity and respect.

But to get there, we’ve identified four key ways to fix PIP that the Timms Review must not ignore.

Follow Scotland’s lead

PIP is supposed to help disabled people afford to manage their condition. But people with MS have consistently told us that applying for PIP is actively harmful to their health and wellbeing.

Sian Pugh, 60, lives with relapsing MS. She says: “The whole experience has been completely dehumanising and demoralising. There is a strong sense that people are viewed as though they are trying to cheat the system.”

But in Scotland it’s often a different story. Their counterpart to PIP is adult disability payment (ADP), and the system is built on the principles of fairness, dignity and respect. The DWP must follow this lead and embed these values across the PIP system.

In practice this could mean greater investment in the assessment system, so assessors are best supported to conduct timely, supportive and respectful conversations, and open access to all notes and reports throughout the process.

Only by adopting this approach can PIP deliver on its intended purpose – to support disabled people to live more independent lives.

End compulsory reassessments for people with long-term conditions like MS

Once diagnosed, MS stays with you for life.

And given that it does not get better over time, reassessing people with the condition is costly, unnecessary, and risks people unfairly losing the support they need.

Lisa, 43, who lives with progressive MS, says: “There is always a fear that everything could be taken away at any time. All I’d need to do is just word something incorrectly, and I could lose everything.”

And there are clear benefits for all parties, as ending compulsory reassessments for people with MS would also save the Department for Work and Pensions (DWP) time and money.

Scrap the arbitrary ‘20-metre rule’

The 20-metre rule dictates that people only qualify for the higher level of mobility support if they’re unable to walk 20 metres unaided. So, if you can walk just one step over 20 metres, roughly the length of two double decker buses, you won’t qualify for the higher rate of mobility support.

This rule shuts people out of mobility support – even when their mobility is severely compromised. It’s a punitive cliff edge that doesn’t reflect real life, as almost no one lives just 20 metres away from their nearest bus stop or local shop.

Instead of assessing whether someone can walk a fixed distance, the criteria should focus on doing essential daily tasks like walking to the local amenities, and take into account how people’s mobility fluctuates over time.

Stop ignoring fluctuating and invisible symptoms

PIP is fundamentally flawed in how it assesses fluctuating and invisible symptoms. It fails to capture the wide ranging and often invisible ways that MS can affect people. There are a few different ways this plays out in practice.

Currently, if someone has an impairment for less than half of the time, its impact is ignored by PIP assessors, so some severe symptoms can be completely discounted. This is known as the ‘50% rule’.

Another problem is that too much weight is given to ‘informal observations’ by PIP assessors. These are often based on assumptions about how someone appears in the moment, and not other, more reliable forms of evidence.

For example, Sian says: “I wore a little makeup for the assessment because it made me feel more confident and in control. I later realised that this had been used against me, as it contributed to the impression that I was managing well.”

We need a more flexible approach to capture the reality of living with MS. The DWP must move away from the rigid 50% rule, instead considering whether activities can be carried out sustainably over time. And they must phase out the weight informal observations carry in the assessment process.

PIP is failing people with MS. The Timms review is our biggest opportunity in over a decade to fix it.That’s why we’ve launched our new campaign: Fairness. Dignity. Respect.

Support MS Society’s campaign to fix PIP. Sign the petition here.

Ross Barrett is policy manager at the MS Society.

Do you have a story to tell or opinions to share about this? Get in touch and tell us more. 

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