MPs hear how disability benefits are failing people with Parkinson’s

A failing system

Personal Independence Payment (PIP) was introduced 10 years ago. It replaced Disability Living Allowance, a benefit to help disabled people to cover the additional costs to live and stay independent.

Since PIP was introduced, people with conditions like Parkinson’s have faced challenges in accessing the benefit and are frequently let down by the system. We know too many people are denied the support they should be getting. 

Parkinson’s UK worked with the MS Society and Crohn’s and Colitis UK to host a joint meeting in parliament to highlight our communities’ concerns.

Parkinson’s, multiple sclerosis (MS), Crohn’s and colitis are fluctuating conditions. This means that many of the symptoms are different day to day, or even hour to hour and, in the case of Parkinson’s, minute to minute. Many of the symptoms of these conditions like pain, fatigue and cognitive issues are hidden. 

The PIP claim process is designed in a way that doesn’t enable people with hidden or fluctuating symptoms to fully explain how the condition impacts their daily lives. This sometimes means people are incorrectly told they can’t access financial help or are offered less than what they are entitled to.  

It’s time to fix PIP

MPs heard from Phil who lives with Parkinson’s, Doula who lives with MS and Sheila who lives with Crohn’s who all shared that the system is not fit for purpose. 

The meeting agreed that the Department for Work and Pensions should review: 

• PIP descriptors: these descriptors are a way for assessors to look at a person’s ability to carry out daily tasks. They should be overhauled to ensure that they accurately reflect the daily lives of those who claim PIP.
• The 50% rule: this rule says if your symptoms affect you for less than half of the month, you aren’t entitled to support for them. For example, using a mobility aid for 14 days in a month would not entitle you to support. The nature of fluctuating conditions means that it's impossible to predict when, how long and how severely symptoms may occur or escalate. So the 50% rule disadvantages people with these conditions.
• The 20 metre rule: this arbitrary rule means if you can walk just one step over 20 metres (roughly the length of two double-decker buses) you get less help.
• Informal observations: too often, PIP assessors make inaccurate decisions based on ‘informal observations’, the way people look or act during their assessment. Nearly 7 in 10 people with MS whose assessment included these said they didn’t reflect how MS affects them. When Parkinson’s UK surveyed people with the condition in 2021, half of those with experience of benefits and employment support, said the person assessing how Parkinson’s affects their daily living, didn’t have a good knowledge of the condition.

Views from the joint meeting 

Phil Bungay, who lives with Parkinson’s, said:

"Having been a civil servant, working in the corridors of Whitehall for almost 30 years, it was strange being on the ‘other side’ but it was good being able to tell my story and more importantly being listened to by a group of people that ‘could’ make change. 

"I told my story of informing the DWP that my condition had deteriorated and having my PIP payments not increased but taken away! Charlotte Nichols [MP who chaired the meeting] asked me if there was a change that I would like to see. I said Parkinson’s is a deteriorating condition, I’m not going to get better, so why should my PIP be able to go down!

"I also told of my experience with the appeal process. I find the inability to be flexible so frustrating. The DWP admitted to me at the appeal that fluctuating conditions do not fit into their boxes."

Sue Christoforou, Senior Policy and Campaigns Adviser at Parkinson's UK, said:

"10 years on from the introduction of PIP, it’s clear that the assessment process is still failing too many people with Parkinson’s, who consistently tell us that the PIP does not work for them.

"Our advisers work with people with the condition to contest poor decisions by assessors, and their nearly 100% success rate speaks volumes about how PIP assessors and DWP decision-makers fail to understand this complex, progressive condition.

"We think the DWP relies heavily on how a person looks or behaves on the day of their assessment, and this is unfair, as is the rule that a symptom must affect your ability to function 50% of the time. And being seen on a “good” day or when you’re “on” can lead to significantly different outcomes to being assessed on a difficult day. 

"Despite the fact that PIP is meant to provide support for disabled people, the application process simply wasn’t designed well enough to effectively capture the reality of living with a fluctuating condition, which is borne out in the powerful testimonies we heard in parliament. It really is time the government fixed PIP.”

Charlotte Nichols MP, Chair of the APPG on MS, said:

"One of the most common concerns MPs hear from constituents is about PIP. It's clear something has to change to stop all of the incorrect decisions, and the stress it causes for people living with conditions like MS, Parkinson's and Crohn's and Colitis.

"We were pleased to have MPs from lots of different parties join to hear from Doulla, Phil and Sheila. We'll be calling on ministers to listen and make the changes necessary to the PIP system."

What next?

We’ll be contacting all MPs who attended the meeting to share information on how they can support vital reforms to PIP through their work in parliament.