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:

  • 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.
  • 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.

Find out more about the Disability Benefits Consortium on their website.

Stop benefit cuts and fix PIP

In March 2025, the UK government announced its latest plans to reform disability support. This includes making changes to Universal Credit and Personal Independence Payments.

Living with Parkinson’s costs more and many people rely on these forms of financial support. These changes will impact people living with Parkinson’s and other disabled people across the UK.

Some of the changes won’t even be consulted on, so the government won’t hear the impact on the Parkinson's community. This is why we need you.

Please sign our open letter to the Work and Pensions Secretary, Liz Kendall MP so the government knows it needs to urgently rethink its harmful proposals. 

We'll also be sharing an online survey and details about focus groups soon, so we can gather your views. We'll use the information and stories you share to form our response to the government consultation.

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."

A photo of Carl Beech, Chief Operating Executive of Spotlight YOPD

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].