Movers and Shakers:Battling for Benefits

And we won an award!!

This week’s episode of the podcast about living with Parkinson’s is about the nightmare some “Parkies” face when trying to get the state benefits they are due, often coming up against a wall of ignorance about their condition.

But we start this week with some breaking news - about us! On Thursday we mingled with stars of screen and radio at the Broadcasting Press Guild awards where Movers and Shakers was named Podcast of the Year. Nick “Judge” Mostyn made a very funny and mercifully brief speech, describing how I had wondered why anyone would want to listen to some “decrepit old relics” talking about living with Parkinson’s and Jeremy Paxman had replied ‘because they might fucking well get it.” (Apologies to those offended by bad language but I’m finding it impossible to discipline some of the older members of the team.)

Award-winning Movers and Shakers

The judge also took the opportunity to promote our Parky Charter with five demands to improve Parkinson’s care which we intend to take to Downing Street on April 11th, World Parkinson’s Day. One of those demands is for a “Parky Passport” which might mske it easier to claim various benefits.

Why such a move is needed is illustrated by our first guest when we get down to business and explore the benefits available to Parkies. Karen was running a successful dog grooming and training business when at 57 she was diagnosed with Parkinson’s. Very soon her symptoms were making it harder for her to groom dogs:

“I couldn't do enough in the day to earn a living. The plan was to gradually wind down the amount of grooming and build up the dog training instead which is mentally more of an effort but physically easier and keep going until I got my pension or dropped dead.”

Then Covid came along, meaning the dog training industry had to move online and by her own admission she was not digitally competent enough to make that work.

“By the time we were all clear of Covid I had had to give up my house .”

For a while, she was living, as she puts it, “on fresh air'“. Having never had any contact with the benefits system before then, she found the process of applying for Universal Credit traumatic:

“The Universal Credit assessment was the worst and most degrading, upsetting, awful thing that I have ever been through in my life.” She describes a telephone call with what sounded like a very young assessor:

“She was bored. She was disinterested, and she wasn't listening to what I was saying.”

Having been self. employed for years, never having to ask anyone for help she suddenly found herself asked some deeply personal questions:”I've now got this child asking me why don't you wear incontinence pads when you go out?”

At one point in her journey with Universal Credit Karen had to speak to an employment advisor at the Job Centre every fortnight. He kept asking her to apply for unsuitable jobs - once at a dog walking business when she says there were days when she was incapable of. walking her own dogs: “I did get to the point where I said, ‘do you know anything about Parkinson's? Do you know what it does to you?’ And he said, well, no, not really.”

Although Karen did get Universal Credit, she felt constantly at risk of it being taken away, and at just £360 per month (plus housing benefit) it meant life was a constant struggle:

“On at least two occasions. I was seriously suicidal, purely because I just didn't have enough money to live on.”

Eventually, Karen learned about PIP - the Personal Independence Payment, which replaced Disability Living Allowance and is designed to help people with a long-term illness, disability or mental health problem cope with extra living costs. She got help from Parkinson’s UK to claim PIP but still found the process very challenging:

“It took three hours to fill the form in, even with the advisor. It's very detailed and you have to use the terminology that they accept.”

Among the questions she found difficult were ‘can you walk 200 yards unaided?’ The answer was yes - on a good day when her drugs were working. But absolutely not on a bad day when she was “off”. It is this variability at the heart of our condition that causes difficulties when we come up against a system with rigid rules. (For an excellent guide to PIP and how to claim it read this from Parkinson’s UK).

Sue Christoforou, Policy Manager for Financial Health at Parkinson’s UK, says Karen’s story is not that unusual. The charity looked at Department for Work and Pensions statistics for PIP and found that for people with Parkinson’s the number of decisions overturned on appeal was 10% higher than for the average claimant. In other words, the assessors are getting it wrong more often.

“Our view is that there's just no understanding - or an insufficient understanding - of fluctuation, which is a massive issue for people with Parkinson’s.”

Parkinson’s UK is asking the government to reconsider a rule that a symptom must be present 50% of the time for it to count in your PIP assessment. People like Paul Mayhew-Archer may only freeze a couple of times a day - but if that is when you are trying to get off a train it can have a serious effect on your mobility.

Sue also tells us about a survey showing that 25% of people with Parkinson’s say they are struggling financially, afraid to put the heating on, compared to 20% of the general population.

It sounds as though we all need a Parkinson’s UK advisor to guide us through the benefits maze - and Sue Christoforou says they tell her they have a success rate approaching 100%. So has the charity got the resources to take on more cases?

“We have the resources to help many people,” she says. “We don't necessarily have the resources to help all the people who need our help.”

For we six pretty affluent movers and shakers this episode was a real eye-opener as we learned just how hard life can be for people like Karen when Parkinson’s deprives them of their livelihood. It has made us all the more determined to push forward with the Parky Charter and continue the mission recognised by the Broadcasting Press Guild in its award.

Don’t forget you can email us at feedback@moversandshakerspodcast.com and do visit our fast growing website for a lot more information about the issues we discuss