Shaping the PIP Review recommendations

We also attended a Shaping Recommendations roundtable alongside other health charities.

The recommendations

In the meetings, we welcomed these recommendations:

• Reduce unnecessary reviews for people with lifelong or degenerative conditions.
• Improve the way PIP assesses and accounts for fluctuating conditions. This includes making sure all assessments consider cumulative impacts, rather than relying on a snapshot of the person's circumstances.

Areas of concern

We know that people with Parkinson's are 10% more likely to be inaccurately assessed for PIP than people living with other conditions. 

We also know that a third (31%) have to go through inappropriate reassessments. 

We believe this is because PIP assessors don't have a good enough understanding of Parkinson's and this must change. We're very disappointed to see that the Timms PIP Review Steering Group had not made any recommendations about assessor training.

We're also concerned about the idea of some PIP support being provided 'in-kind'. This means providing goods or services instead of money. 

We made it clear that Parkinson's is a highly complex condition and that costs of living with the condition cannot always be anticipated. 

We also said that some costs, such as replacing household items broken as a result of uncontrolled movements, might not even be recognised as disability-related costs when they should be. 

We said support for people with Parkinson's should always be provided as a cash payment. 

We expect the final report of the Timms PIP Review to be published in November. 

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

"We're excited by the prospect of a PIP system that better captures the reality of living with a fluctuating condition like Parkinson's. People with the condition will be pleased to see that the PIP Review Steering Group wants to get rid of unnecessary reassessments. 

"We know that critical to realising these ambitions is a commitment to better training, specifically focused on fluctuating conditions. We stand ready to support the development of that training.

"However, we're worried about the idea of providing goods and services, rather than cash support. Cash is critical for anyone living with as complex a condition as Parkinson's. We urge the UK government to continue providing cash support for people with Parkinson's."