PIP Review Steering Group publishes new recommendations

Early recommendations

Many of the recommendations reflect the needs and worries of people living with Parkinson’s. They include:

• improving how PIP assesses fluctuating conditions
• reducing unnecessary reviews
• introducing a framework to improve assessments
• having different assessment routes for different conditions.

Read the full update on the GOV.UK website. 

But we do have some concerns. In the future, those who get PIP may be offered services instead of cash. But people with Parkinson’s and long term conditions know what’s best for them. We believe you should always be supported with cash payments you can control. 

We’re also worried that making the cost of everyday support items part of the assessments might work against people with Parkinson’s. Some things you need to stay independent might not seem obvious or relevant to an assessor, but they still cost money.

We also want to know if setting up different assessment routes for different conditions means people with Parkinson's will always be reviewed by someone who understands the condition.

David Newbold, Director of Community at Parkinson’s UK, said:

“Although these are just emerging recommendations, it is so heartening to see that they vindicate what we and the wider Parkinson’s community have long called for.

“We know we can’t afford to rest on our laurels. That’s why we will continue to work hard to ensure people with Parkinson’s get better, fairer support with the cost of living with an incurable, progressive condition.”

Your voice is having impact

Earlier this year, our PIP Review Reference Group met. The group is made up of 15 people living with Parkinson’s or caring for someone with the condition. Since then, the Group has raised the needs of people with Parkinson’s directly with the PIP Review Steering Group. We’re pleased the Steering Group listened and has proposed solutions to our concerns.

Some members of our Reference Group will now be taking part in workshops to make sure people with Parkinson’s are heard as recommendations develop. And we’ve been invited to join a discussion group to help develop the recommendations.