PIP delays impact people with Parkinson’s

Data from our information and support service backs up the Citizens Advice findings. The data suggests that people with Parkinson’s are also experiencing lengthy delays to access PIP.

PIP helps disabled people with the extra costs of living with a long-term health condition.

Our advisers have shared that people with Parkinson’s are being left without the money they need to meet the costs of living with the condition. And despite the average time for PIP decisions now being 20 weeks, people with Parkinson’s find they can wait for up to 6 months for a PIP decision. 

People with Parkinson’s have shared other issues they have faced with PIP. They include:

• the condition not being understood by assessors
• initial PIP decisions not always reflecting the reality of the claimant’s experience of living with Parkinson’s. 

These issues can also impact the time it takes to get PIP.

The impact on people with Parkinson's

A person with Parkinson’s shared his experience with us. He said:

"The roughly 30 pages of questions don’t work for people with Parkinson’s as they don’t really capture what living with the condition is really like. But with support from Parkinson’s UK, I did fill out the form. 

"Then I was asked to attend an appointment with a healthcare professional, who quizzed me on every subject. I didn’t really have a choice about when the appointment was. 

"It was about 6 months before I got a decision from the Department for Work and Pensions (DWP). I found that they had awarded me zero points and said I wasn’t eligible for the benefit.

"I got back in touch with Parkinson’s UK who helped me challenge the decision. Another 6 months passed before the DWP contacted me again to say they had reversed their initial decision."

What are we doing?

Without the support of PIP, people with Parkinson’s are not living as well as they could be. That’s why we’re asking the Secretary of State to:

• develop an emergency plan to urgently tackle this backlog, including reducing the number of claimants required to have a medical assessment. We believe this is one of the main reasons for these delays
• extend the award period so people have to reapply for PIP less often.

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

"People with Parkinson’s need urgent action from the UK government to help them access PIP. We call on them to recruit more high-quality, comprehensively trained staff to deliver PIP efficiently to make sure everyone with Parkinson’s gets the support they need, when they need it."

Share your experience to improve PIP

We know PIP doesn’t always meet the needs of people with Parkinson’s. We’d love to hear from you. Share your experience of applying for PIP.

If you’d like to get involved in influencing politicians and decision-makers to improve the benefit system join our Campaigns Network. Or become a campaigns volunteer. 

If you need information and support or advice on Parkinson’s and benefits, call 0808 800 0303 or email [email protected].

Read more about Citizens Advice's findings on their website.