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Employment and Support Allowance one year on: Benefit reforms hitting the wrong people

27 October 2009

Two thirds of younger people with Parkinson's disease who responded to a new survey by the Parkinson's Disease Society have been wrongly forced into job seeking, despite being physically unable.

The survey uncovers major problems with the medical testing process for Employment and Support Allowance, which replaced Incapacity Benefit one year ago this week.

Employment and Support Allowance (ESA), has a tick box style medical test to determine whether a person is capable of work. This test does not allow for fluctuating conditions like Parkinson's, in which people can be capable one minute, but severely disabled the next.

The decision is based on the opinion of the assessor, who in many cases, does not refer to a person's medical history, and is untrained in Parkinson's.

The survey of people under 65 with Parkinson's showed that 2 in 3 (66%) respondents who had gone through the ESA process had been judged fit for work, and put onto Jobseeker's Allowance, forced into early retirement, or given ESA but placed in a Work Related Activity Group.

9 in 10 of these (93%) thought the decision was wrong.

However, the Government plans to move all existing Incapacity Benefit claimants onto ESA by 2013.

12,000 people with Parkinson's currently receive incapacity benefits in the UK.

As a result of the findings of our survey, the Parkinson's Disease Society will submit a report to the Government about the changes that are needed for the system to be fair.

Our report will recommend:

  • more time given for medical assessments
  • training for medical assessors on complex conditions like Parkinson's
  • previous medical records to be properly taken into account

Val Buxton, Director of Policy, Campaigns and Information at the Parkinson's Disease Society, said:

"Nearly half of people of working age with Parkinson's are on Incapacity Benefit or ESA.

"Parkinson's disease is a complex and fluctuating condition, with the potential for someone affected to appear healthy one minute, but to be incapacitated the next.

"We want the Government to give assessors training on the nature of Parkinson's, give them more time to assess people with Parkinson's, and to encourage assessors to consider previous medical history.

"We want to see these changes happen as soon as possible, to make sure that no-one with a complex condition like Parkinson's is unfairly accused of being a benefits cheat."

-Ends-

Ref: 106/2009

Notes to editors

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Case study

Keith Haddow (58) has a form of Parkinson's, called multiple system atrophy (MSA). It's a much rarer form of Parkinson's that does not respond well, if at all, to medication. MSA also progresses more rapidly than typical Parkinson's, and Keith says he has been told the outlook for his condition is 'not good'.

Keith was rejected for Employment and Support Allowance (ESA), and has been waiting the decision of his appeal for over 4 months.

Like the more common form of Parkinson's, Keith's symptoms include a slowness of movement, stiffness, freezing, and his speech is also affected. When the medication does work, and wears off, he becomes stiff, like a statue.

Parkinson's and MSA both fluctuate in the severity of the symptoms, meaning people can be capable one minute, but severely disabled the next.

The day Keith had his ESA medical assessment, he had taken his medication an hour before, so was assessed as having 'mild' Parkinson's, although he'd been rated as 'severe' by his consultant.

Keith says:

"The assessment was more like a computer tick box system and the questions they ask you bear no resemblance to the condition you've got. Then there was a medical, for about 20 minutes, and it seems that if you can move your arms and your legs, you're fit enough to work.

"I was a heavy goods driver. I do have problems with my movement, and I don't see how there's anything I can really do. I can't operate machinery for safety, and my symptoms mean I can't write. What I really should have done is not take my medication that day - then they wouldn't have been seeing me at my best."

The survey

A survey of 40 people under 65 with Parkinson's who claimed Employment and Support Allowance was carried out by the Parkinson's Disease Society between January and May 2009, and followed up during September and October 2009.

The survey showed that 2 in 5 (40%) respondents who had gone through the ESA process had been judged fit for work, and put onto Jobseeker's Allowance or forced into early retirement.

A further 1 in 5 (22%) respondents were given ESA but placed in a Work Related Activity Group. This means that, despite the disabilities that often come with Parkinson's, they must attend 5 Pathway to Work interviews, otherwise benefits may be stopped or reduced.

The Parkinson's Disease Society

The Parkinson's Disease Society is the leading authority in the UK on the condition and a world leader in research, with over £40million invested in research over the last 40 years.

We campaign for a better quality of life, provide expert information on all aspects of Parkinson's and a local support network for people with Parkinson's, their carers, families and friends.