Ditch disability benefits cuts

People with Parkinson's rely on financial support to stay independent and in control. We're campaigning to stop harmful disability benefits cuts.

Disability benefit reviews and reassessments are suspended for 3 months from Tuesday 24 March. This temporary measure is to ensure that benefits continue during the coronavirus (COVID-19) outbreak.

To find out more, visit the GOV.UK website.

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Our benefits campaigns

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People with Parkinson's have faced many problems since the government replaced Disability Living Allowance with Personal Independence Payment (PIP) in England, Scotland and Wales in 2013.

People with Parkinson's have found applying for PIP frustrating, upsetting and stressful. Many believe the anxiety and stress caused by applying has made their condition worse.

That's why we're campaigning to make PIP work for people with Parkinson's.

What's wrong with PIP?

  • Submitting a claim for PIP and providing supporting evidence for your application can be difficult.
  • The assessment can be stressful.
  • Paper reviews and indefinite awards are not being consistently applied for those living with Parkinson's

What changes have we helped make to PIP?

Since 2013 we have:

  • stopped proposed cuts to PIP
  • educated assessors about the fluctuating nature of Parkinson's
  • overturned stricter rules introduced for the 'mobility' component of PIP
  • ensured that the assessment guide now recommends paper reviews
  • welcomed the introduction of indefinite awards in 2016 - called ‘ongoing awards’
  • improved the assessment process, so that:
  • those on the highest rates of PIP won’t be regularly reassessed
  • those who are over state pension age and receiving PIP won’t be regularly reassessed
  • backdating ongoing PIP awards so that people with Parkinson’s don't need to be reassessed to get the indefinite award

What other changes do we want?

We're calling on the government and assessment companies to:

  • review the '20 metre rule', so more people with Parkinson's who have mobility problems can qualify for essential support, such as access to the Motability scheme
  • improve the way that medical evidence is collected, so that people with Parkinson's don't need to go to face to face assessments as often
  • increased use of indefinite awards
  • improve assessors' knowledge and understanding of Parkinson's, so that people get the right support first time
  • reduce waiting times for appeals to the tribunal service

How you can help

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Many people with Parkinson's receive Employment and Support Allowance (ESA) because they're too ill to work.

We believe the eligibility tests for ESA are unfair, crude and simplistic. The system is badly failing people with Parkinson's – but we're campaigning for change.

What's wrong with ESA?

  • People with severe and progressive Parkinson's are still being put in the ESA group where a 'return to work' is expected - and subjected to repeat assessments of their fitness for work.
  • Some people on ESA can only claim this vital support for up to a year, due to changes made by the previous Government.
  • From April 2017, people with Parkinson's who qualify for the 'back-to-work' group for Employment and Support Allowance (ESA) only receive £73.10 per week. This is a reduction of £1,500 a year compared to people who qualified before the change.
  • A current proposal would see the assessment split in 2, with work coaches, who have little knowledge of Parkinson's, deciding what employment activity a claimant would have to complete.

What changes do we want?

  • People who are not expected to return to work in the near future should be awarded ESA for longer before having a face-to-face reassessment.
  • The government should revise the ESA assessment, to make sure it fully captures the impact of Parkinson's on a person's ability to work.
  • Reintroduce the extra payment for the 'back-to-work' group of ESA.
  • Ensure that the assessment process is not split in two and that the medical assessors are given ongoing training on how Parkinson's affects people's lives.

How you can help

We're concerned about the impact of the current ESA system on people with Parkinson's, and are collecting evidence to fight for change. 

If you're applying for benefits, complete our disability benefits diary (PDF, 473KB) to tell us your story.

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If you are too ill to work, or you have to reduce the amount of work you can do, as a result of Parkinson's then you may be able to claim Universal Credit.

Universal Credit will replace 6 existing benefits with a single payment for those who are out of work or on a low income.

There have been a lot of difficulties introducing Universal Credit. One of the benefits it replaces is income related Employment and Support Allowance (ESA). We believe the eligibility tests for ESA are unfair, crude and simplistic.

We don't believe that Universal Credit is working for those living with Parkinson's so we are campaigning to make it better.

What's wrong with Universal Credit?

  • The system is complicated and there can be up to 10 stages to making a claim for Universal Credit.
  • The first payment should arrive 5 weeks after claiming but delays caused by complex cases can mean that people must wait much longer to receive any money.
  • Long delays waiting for payments can cause financial hardship and stress, which can exacerbate the symptoms of Parkinson's.
  • Those who apply for Universal Credit will be expected to make their claim online while those unable to claim this way are expected to seek out local services for help.
  • People with Parkinson's will be expected to sign commitments that require them to perform 'work related activities' that are supposed to help them return to work. Failure to complete these activities can result in sanctions.
  • Work coaches with no medical background, and only a limited understanding of Parkinson's, will be the ones to decide what 'activities' a person will have to perform.
  • Some disability benefits have been cut from Universal Credit, leaving disabled people worse off financially.

While Universal Credit is still being rolled out we have the opportunity to highlight how the system is affecting people with Parkinson's, and what needs to change.

What changes do we want?

  • Simplify the claiming process for Universal Credit so that there will be less opportunity for claims to be delayed.
  • Introduce automatic payment after 5 weeks, even if a claim has not been fully processed.
  • Provide more resources to help those who have difficulties with online claims and ensure that if someone identifies as living with Parkinson's then they can make a claim over the telephone.
  • Introduce a specialist disability claim line for those living with complex progressive conditions.
  • Allow more claims to be made face-to-face for those who have difficulties with speech.
  • Increase the number of specialist disability employment advisers to ensure that people living with Parkinson's will be seen by a work coach with a good understanding of the condition.
  • Increase disability training for anyone who decides which activities will be required for a person living with Parkinson's.
  • Introduce the right to appeal against a claimant commitment.
  • Change the rules so that anyone claiming disability related benefits cannot be sanctioned.
  • Introduce a disability element to Universal Credit to replace the disability benefits that were cut from the system.

How you can help

We're concerned about the impact of the current Universal Credit system on people with Parkinson's and are collecting evidence to fight for change. 

If you're applying for benefits, complete our disability benefits diary (PDF, 473KB) to tell us your story.

Help us gather the evidence we need to make change happen – tell us your experience of claiming Universal Credit.

What we’re speaking out on during the coronavirus crisis

We’re supporting and sticking up for people with Parkinson’s. Here are some of the things we’re fighting for right now.


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Janet's story

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We campaign to help people like Janet, who has Parkinson's and relies on her specially built car to help her get around.

When her mobility allowance was stopped, she thought she might lose her car.

We're fighting to stop cuts like these.

Hear about Janet's experience in our short video.

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