What the Health and Disability White Paper means for people with Parkinson’s

Transforming support

Launching the government’s latest plan to get people back to work, the chancellor has announced some key measures that he believes will incentivise people with long-term conditions, like Parkinson’s, to move off Universal Credit and into work. 

Transforming Support: The Health and Disability White Paper announces key changes, which include:

• Scrapping the Work Capability Assessment (WCA). 
• Greater scrutiny and instruction by work coaches for those on Universal Credit.
• Requiring employers to discuss requests for flexible working with employees.

You can read the whitepaper on the GOV.UK website.

Work Capability Assessment

The WCA is used to determine whether a claimant has the capability to work. Currently, if a claimant is found not to be sufficiently able to work, they are exempt from the Universal Credit conditionality and the sanctions regime. 

Conditionality and sanctions

However, future Universal Credit claimants who earn less than the equivalent of 18 hours pay at the national living wage will be subject to greater scrutiny and instruction from DWP work coaches on what to do to earn more.

This will apply whether or not they have a long-term condition. And if claimants don’t comply with the instructions of their work coach, they could lose some of their Universal Credit income. 

The government is also proposing that Universal Credit claimants whose partners are working will also have to engage with DWP work coaches. 

We are particularly concerned about these proposals, because if people with Parkinson's feel under pressure, that stress can often aggravate their symptoms, such as tremor, muscle rigidity or difficulties with speech. Where symptoms are aggravated, people with the condition are less likely to be able to gain and retain work. 

And, while the government says that where work or work-related activity is not possible or appropriate for someone, they will not be subject to conditionality, but this will be at the discretion of work coaches. 

Focus group participant with Parkinson’s:

"That's what I found because when I was working full-time and struggling to do full-time, you’re thinking you've got to keep going, you've got to keep going. I found [the stress] made my symptoms worse."

Disability-related support 

The removal of the WCA will also mean that the Personal Independence Payment (PIP) assessment will be the only route to accessing disability-related financial support. In the future, Universal Credit claimants who also receive PIP will be awarded a new health element on top of the Universal Credit standard rate. 

But people with Parkinson’s tell us that PIP assessment criteria do not reflect the reality of living with Parkinson’s.

If even greater emphasis is to be placed on the PIP assessment as the gateway to accessing financial support, it must be urgently revised. We will continue to work with the Department for Work and Pensions to try and improve the assessment criteria and guidance provided to those conducting assessments. 

Flexible working

We are pleased the chancellor has recognised some of the key barriers to work that people with Parkinson’s have also shared with us. They include a lack of employer support for flexible work patterns and employer reluctance to redesign jobs in order to keep talent. 

The white paper proposes to give all employees the right to request flexible working from their first day of employment and make it easier to make those requests. It also encourages employers to offer occupational health services to their employees. 

However, we are disappointed that the government has not taken the opportunity to tackle another key employment barrier: employers’ negative views of disabled people.

When we surveyed people with Parkinson’s: 

• Almost a quarter (24%) either did not disclose or delayed disclosure of their diagnosis to their employer.
• Where people with Parkinson’s did disclose their diagnosis, a quarter (25%) did not feel supported by their employer.
• Over half (56%) said their employer did not attempt to find out more about Parkinson’s.
• Of the 56% of respondents in work, half stated they would want to retire early on health grounds, as they felt unable to continue working at the same level.

Survey respondent with Parkinson's:

"Just feel useless. My employer never encouraged me to stay or help reduce my hours. I assumed once you had Parkinson’s that was it."

Responsive, flexible work

When we spoke to people with Parkinson’s last year, they repeated the need for responsive, flexible workplaces and work cultures. We were told that these are the most critical factors in determining whether a person with Parkinson’s can gain, retain and progress in work.

Focus group participant with Parkinson’s:

"You need a lot of flexibility, so you need employers to be flexible with hours, to understand how you can be. Every day can be different. And for me, I have a family still, so that’s going to come into it a lot."

Changes to government plans needed

The minister for disabled people has said he wants to address disincentives to employment. However, we don’t believe the government’s plans to increase Universal Credit conditionally will bring more people with Parkinson’s and other long-term conditions into work. 

We believe that the government must do this by making a sustained financial commitment and ensuring that all employers provide access to high-quality holistic occupational health services. This would make a much greater difference to people with Parkinson’s and to the employment rate of disabled people. 

To support people with Parkinson’s to gain and retain work, we believe the government must:

• Revise the PIP assessment to make sure that people with Parkinson’s get the financial support they need.
• Tackle employers’ negative attitudes toward disabled workers.
• Make free and comprehensive occupational health services available to allow employers to develop more flexible and responsive workplaces and cultures. 

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