What the latest disability support reforms mean for people with Parkinson's

The UK government has announced long awaited changes to Personal Independence Payment (PIP) and Universal Credit (UC). These changes are likely to affect people with Parkinson’s. 

Proposed Universal Credit changes

The proposals announced are:

• an increase in the Universal Credit standard allowance for new and existing claims from April 2026. This would mean the standard allowance increases by £7 per week
• for people who already receive the Universal Credit health element, this will be frozen at £97 per week until 2029 or 2030
• for new claimants, the health element will be paid at a lower rate
• people with the most severe, life-long health conditions, who are unable to work, will be protected through a new additional premium. They also won't be reassessed.

A new National Insurance contribution-based Unemployment Insurance benefit will also be created. This will replace New Style Employment and Support Allowance (ESA) and New Style Jobseekers Allowance (JSA). Those claiming this new contribution-based benefit would have to take part in tailored employment support.

The government also announced that it will scrap the Work Capability Assessment (WCA). The WCA is the test to see whether someone with a health condition should receive more Universal Credit than the standard allowance.

This will mean that eligibility for all disability-related benefits will be determined by the PIP assessment, an assessment which is already challenging for people with Parkinson's. Under the new system, neither financial support from PIP or the health element of Universal Credit will be affected by whether or not you work.

Proposed PIP changes

Perhaps most worryingly, the government will change the PIP criteria so that a claimant must score at least 4 points for at least one daily living activity to be eligible for the daily living part of PIP. This will not apply to the mobility component.

The government will also review the assessment process, a process that we have told the government fails people with Parkinson’s. In the meantime, the government wants to return to face-to-face assessments and record them as a matter of routine.

For those with very severe health conditions, the need to undergo a full PIP assessment could be reduced, if there’s enough evidence to demonstrate how their health condition affects their lives.

What this means for people with Parkinson’s

We know that accessing PIP is hard enough already.

People living with the condition tell us:

• that they felt like a criminal during their PIP assessments
• that their assessor did not understand Parkinson’s
• that the speed and severity of the change in Parkinson’s symptoms, often in a matter of hours, was not accounted for.

This is unacceptable.

We think that basing an additional payment, the Universal Credit health element, on an assessment process that has been failing people with Parkinson’s for well over 10 years is deeply worrying.

We are also concerned about proposals to increase face-to-face assessments, as our community describes them as humiliating and degrading. We think this decision is a mistake.

People with Parkinson's tell us that, in the earlier stages of living with the condition, PIP helps them stay in work. Making it harder to access PIP in those early days, by increasing the number of points needed, will mean people with the condition will find it more difficult to stay in work. 

Our position on PIP

We think many of the UK government’s proposals to reform for disability support are wrong. We are calling for the following changes:

• people with Parkinson’s should not be subject to assessments. The Department for Work and Pensions (DWP) should source evidence from healthcare professionals and support workers to understand how Parkinson's affects each PIP applicant

• PIP awards should be based on an individual’s application and supporting documentary evidence alone

• people with Parkinson’s, a degenerative condition, who are already getting the highest rates of PIP, should not be reassessed

• training on Parkinson’s, informed by the experiences of people living with the condition, must be given to all assessors and DWP decision-makers

• the UK government must urgently update the PIP rules to make sure assessors acknowledge fluctuating symptoms.

Our plans

Throughout the consultation on these new plans, we will talk to people with Parkinson’s.

We will:

• run focus groups in April and an online survey. We'll share details of how you can take part soon

• use the information and stories you share with us to form our response to the proposals

• develop a campaign to make sure the concerns of the Parkinson's community are heard.

Share your experience with PIP to help us build our campaign. And we’ll work with other charities to put pressure on the government to scrap their harmful proposals.

If you live in Scotland or Northern Ireland, things are different. Important disability benefit powers are devolved to Holyrood and Stormont.

No matter where you live, we'll be campaigning to make sure people with Parkinson’s get the financial support they need.