Avoidable poverty is damaging the health of people with Parkinson’s

The cost of living crisis isn’t over

There was a time, a year or so ago, when you couldn’t turn on the radio, click on a news website or flick on the TV without hearing about the cost of living crisis. Search ‘cost of living crisis’ on the internet now and the stories are much fewer and further between – but the crisis isn’t over. It’s not over for the 20% of the general population who say they are struggling and it’s not over for the even higher proportion of people living with Parkinson’s who can’t afford the basics, like heating and food.

Threat to health

For those living with Parkinson’s who cannot make ends meet, this isn’t just a matter of not being able to afford enough to eat or to put the heating on when it’s needed – although that is bad enough. It’s also a matter of worsening symptoms, of compromised quality of life, of a threat to health. Half of those living with Parkinson’s who are struggling financially told us their condition was getting worse as a direct result of not having enough to live on. That means more pain, more muscle rigidity, more immobility. And those are just the motor symptoms of Parkinson’s. The people we work for also told us struggling in poverty was damaging their mental health too.

Avoidable poverty

Is this threat to health inevitable? We don’t think so. Even before the first hints of the cost of living crisis back in late 2021, far too many people with Parkinson’s were not getting the support they needed. Our analysis of Department of Work and Pensions (DWP) data shows that, on average, people with Parkinson’s are 10% more likely to be inaccurately assessed for Personal Independence Payment (PIP) than those without the condition. At the same time, our specialist benefits advisers have an almost 100% rate of success in overturning no or low PIP awards for people with Parkinson’s.

We’ve heard from people living with Parkinson’s that the DWP said they are not entitled to any PIP at all. Yet, after getting in touch with one of our specialist advisers, they got the PIP they were entitled to. We’ve worked with one person that received over £8,600 in backdated payments, as well as a weekly amount of PIP of over £170. Not only that, now they have the correct PIP award, they are exempt from vehicle tax, entitled to a Blue Badge and can access discounted bus, train and taxi fares, potentially saving hundreds more pounds a year.

Budget bonus?

So, did the Chancellor ensure that people with Parkinson’s will get the support they need, when he stood at the dispatch box to deliver his budget speech last week ? He did not. That’s why we have asked our campaigners to call on the Chancellor to ensure that people with Parkinson’s get targeted support with the cost of heating and make PIP work for people with Parkinson’s.

Biography

Sue Christoforou is a Policy Manager at Parkinson’s UK, covering welfare benefits, employment and transport. Her role involves working with people with Parkinson’s to understand how government policy affects them and what change we can influence to improve life for people living with the condition. She has worked in policy influencing roles for a wide range of health and other charities over a number of years and joined Parkinson’s UK in 2022. Sue is passionate about working with people with Parkinson’s to make sure their voice is heard by policy decision makers.