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 which 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.
Share your views on PIP
Our campaigning in 2025 stopped the government from making it harder for people with Parkinson’s to claim PIP. They have committed to reviewing PIP. And we recruited a panel of people with Parkinson’s to share their views on how PIP can be improved.
The government has announced a consultation on PIP, called the Timms Review. This is a great opportunity to share your views.
The government wants to hear:
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your experience of claiming PIP
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your views on the purpose of PIP
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how fair PIP awards are
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how PIP needs to change to be fit for purpose now and in the future.
You can read more about the consultation and use our template (Word doc) to help you respond by 28 May 2026.
If you have any questions, get in touch with [email protected]
Kristine's story
I was diagnosed with Young Onset Parkinson’s in July 2023, aged 52.
My Parkinson’s nurse encouraged me to apply for PIP, to help me continue living my life without being defined by my symptoms. But the process was exhausting.
Writing down everything Parkinson’s had taken from me was incredibly depressing. Then came a 90-minute phone assessment where I had to explain, over and over, that Parkinson’s fluctuates hour by hour, not just day by day.
I was told, ‘but when you’re okay, you can go out on your own.' That completely missed the point. Before Parkinson’s, I never had to think twice about going anywhere alone. Now everything depends on whether my medication is working and how my symptoms are behaving.
When I received the assessment report, it was full of inaccuracies and misquotes, and I felt completely drained. I couldn’t face asking for a mandatory reconsideration. But last year, with the support of a local adviser who joined my assessment, I applied again - and this time I was awarded PIP.
Parkinson’s is a progressive neurological condition. There is no cure, and it will not improve. Yet in two years, I’ll have to go through the same forms, the same 90-minute assessment, and the same emotional toll - just to prove that I still have Parkinson’s.
Share your experience
Sharing the real life experiences of people with Parkinson's and care partners is essential when putting pressure on the government.
Please get in touch if you feel comfortable sharing how Personal Independence Payment and Universal Credit supports you.
Download our 'Still nowhere near enough' report
Read our "Still nowhere near enough" report, which shows that people living with Parkinson’s are still struggling with the cost of living.
Need advice or support?
From benefits and grants to loans and other support, there is support out there. And we can help you find what’s available to you.
Our team of trained advisers can give you information and advice on how to access benefits and manage increased costs.
If you need tips and advice on managing the cost of living, read an article from our online magazine.
What we think and get in touch
We influence public policy to benefit people with Parkinson's and carers. Read more about how we influence change and how to get involved.
We're here to answer any questions and give support. Email the Campaigns team at [email protected].