Make benefits work for people with Parkinson's

The Parkinson’s community is being let down by an unfair benefits system. At a time when prices are increasing, it’s impacting their ability to manage their symptoms and stay independent. That's why we're campaigning for a fairer system.

People with Parkinson’s must get the financial support they need. 

We're campaigning to make sure people living with Parkinson’s, and those who care for them, get the financial support they need to live well, the first time they apply. 

And we need your help to put pressure on the government to make changes to the social security system that will better support the Parkinson’s community.

What are we doing?

We're campaigning to make sure:

  1. Personal Independence Payment (PIP) assessments are conducted sensitively by assessors who understand that people living with Parkinson's have fluctuating symptoms. We want people to get the right support the first time.
  2. Universal Credit works for people with Parkinson’s, alongside other members of the Disability Benefits Consortium, a national coalition of over 100 different charities and organisations, we are committed to working towards a fair social security system.

Carl's story

"I was diagnosed with Young-Onset Parkinson’s in 2023, and had just turned 51.

"The process of applying for PIP was long and involved. I think, unless you've got help, or you’ve got a good grasp of some quite complex issues, then it’s not the easiest of processes to apply for PIP.

"It was a 90-minute phone assessment. The assessor kept saying, "You’re saying it's fluctuating, and this is what it's like when you're off, but tell me about when you're at your best?". It totally misses the point that we’re totally medication-dependent to be at our best.

"I’m OK 90% of the time, so they just don’t understand. They see somebody who is eloquent, competent, and intelligent, and think we’re pulling the wool over their eyes.

"I was told my application was declined and decided to challenge it, and with the help of Parkinson's UK my mandatory consideration has meant I've been awarded PIP."

Download our 'Still nowhere near enough' report (PDF, 6.4MB)

Read our 'Still nowhere near enough' report that shows that people living with Parkinson’s are still struggling with the cost of living.

Get in touch

We're here to answer any questions and give you any support around campaigning. Email the Campaigns team at [email protected].