Still nowhere near enough

A year after our first cost of living report, Nowhere near enough (PDF, 3.8MB), we asked the Parkinson’s community if they were affected by the cost of living crisis and if so, how. 

We found that, despite the government’s Cost of Living Payment scheme, a quarter of those who took part in our survey are struggling to cover the most basic costs.

Struggling to cover the basics

Of those who said they were struggling:

• almost 8 in 10 said they will turn on their heating less frequently during winter to save on fuel costs 

• a third are having fewer meals to save money 

• almost 1 in 4 (24%) had to borrow money to pay for basic necessities such as food or household fuel 

• well over two thirds of people with Parkinson’s are travelling and socialising less because of their financial situation 

• two thirds say they are more isolated than they were at the beginning of 2023 

• almost 2 in 5 say that they do not have enough money to cover basic needs 

• half say that their symptoms have been made worse by their financial situation.

A survey respondent shared: "[My] muscles and joints are stiffer due to cold and not having the heating [on]."

It is deeply concerning that so many people with Parkinson’s cannot afford the bare essentials of adequate food and heating and that their health is suffering as a consequence. 

Another survey respondent said: "Increased anxiety resulting in Parkinson's symptoms worsening [...]. I was also prescribed antidepressants to help me cope with the additional stress."

In January 2023, the Secretary of State for Work and Pensions, Mel Stride, said: "We are sticking by our promise to protect the most vulnerable.” 

But our findings show that for people with Parkinson’s in need, that promise has not been fulfilled.

Even if a person with Parkinson’s received the maximum amount of Cost of Living Payments they could have, it would still be nowhere near enough to cover the 2023 additional living and caring expenses for people with Parkinson’s of £4,434.

A survey respondent shared: "[...] Scared to have the heating on as much, so colder and muscles are stiffer."

What we think

Sue Christoforou, Policy Manager at Parkinson’s UK, said:

"Even with a second year of Cost of Living Payments, the health of far too many people with Parkinson’s is being damaged as a direct consequence of not having enough to live on. 

"Despite this, the government will end all cost of living support by the end of March, as if the cost of living crisis was over.

"Yet, millions of people, including those with Parkinson’s, are expected to reach the end of cheaper fixed-rate mortgages this year and grapple with rental costs which are rising at an alarming rate. 

"And, while the price of household fuel is 18% lower than this time last year, the cost is still 89% higher than it was in January 2021. 

"From April 2024, the cost of delivering council services is expected to be almost 29% higher than 3 years ago. As a result, many local authorities will have to consider cutting vital services, including support for low-income households. 

"At the same time, the UK government has given no indication that they will provide further direct cost of living support. Once again, we call on the government to urgently put in place help with heating costs for people with Parkinson’s and stop the serious harm to their health."