Cost of living support payments are nowhere near enough

This year’s cost of living payments will be sent out from this week. But, with 2 in 3 of the Parkinson’s community struggling to cover living costs, they're nowhere near enough.

People eligible for this year’s cost of living payments should start receiving them from 25 April. Find out more about cost of living payments on the GOV.UK website.

  • People with Parkinson's who claim means-tested benefits will get a one-off payment of £900. This includes universal credit, income based employment and support allowance (ESA) and pension credit.
  • Anyone who claims disability living allowance (DLA), personal independence payments (PIP) or adult disability payment (ADP) will receive a further one-off payment of £150. This will be paid in the summer.
  • Pensioner households where at least 1 person claims the state pension and receives the winter fuel payment, will receive a further £150 or £300 (depending on circumstances) to be paid in November.

The £900 for people on means-tested benefits will be paid in 3 lump sums, the first of £301 paid in April or May, then £300 paid in the autumn and finally £299 paid in spring 2024. 

The cost of living payments are tax-free. None of these payments will count towards the benefit cap and will not have any impact on the benefits people are claiming at the same time. The payments will not count in any social care assessment of resources.

Impact of the cost of living

But in our new report, "Nowhere Near Enough" we set out why the government’s cost of living package just doesn’t meet the needs of people with Parkinson’s. 

Read the full "Nowhere Near Enough" report (PDF, 3.8MB).

Last autumn, we asked people with Parkinson’s how the cost of living crisis was affecting them:

  • 3 in 5 (61%) said they are struggling to cover costs in general. 
  • Over three quarters (77%) said they expected to turn on their heating less frequently during the winter to save on fuel costs. 
  • A quarter (25%) said they were having fewer meals in order to save money. 
  • Well over two thirds (70%) said they felt more socially isolated than they did at the start of 2022. 
  • 2 in 5 (40%) said their symptoms were being made worse by their financial situation.
  • Gas bills, electricity bills and food are the costs that people with Parkinson’s told us they were finding most difficult to manage.

Energy costs a problem

"Worry, stress and anxiety make my Parkinson’s symptoms worse. My tremor is worse, my balance and ability to walk. I feel anxious and stressed at the time worrying about what the future might bring."

People with Parkinson’s have been hit harder than most by the cost of living crisis because the condition affects the nervous system, which controls body temperature. This means people with the condition can be more sensitive to heat and cold. And, if someone with Parkinson's is unable to keep warm, they can experience debilitating stiffness and pain. 

"As we are not using our central heating yet, I tend to seize up and my falls are increasing as a result."

This greater need for warmth costs. We’ve calculated that in 2022, a year when household fuel inflation hit 89%, people with Parkinson’s will have had to pay an additional £1,196 on average. That is over and above the inflated energy costs that the whole population has had to pay. 

"I don’t see my friends and family as much as I used to do. My home is colder due to the fuel costs, and these things have impacted on my mental health which in turn has made my Parkinson’s symptoms worse."

In autumn last year, the then prime minister told us that the average household should pay no more than £2,500 a year in household fuel bills. But for an average household that includes someone living with Parkinson's that meant a bill around £3,700. 

And yet the maximum amount of cost of living payment support (including the energy bills support scheme payment of £400) that could have been claimed last year was £1,500. 

"My main concern is heating and food costs. Food costs are also of concern, in particular, where specific dietary requirements are needed."

Even if a person with Parkinson’s was eligible for and received all the cost of living payments, as well as the energy bill support scheme payment, it would have been nowhere near enough for people with Parkinson’s to cover the cost of household fuel, let alone other bills, such as for food and transport. 

What we think

Sue Christoforou, Senior Policy and Campaigns Adviser at Parkinson’s UK, said:

"We wrote to the chancellor last year, asking for the extra support that people with Parkinson’s had told us they needed. He told us that the cost of living payments provide targeted support to the most vulnerable households. But he’s missed the point. 

"The cost of living payments are nowhere near enough. Even those who got the full £1,500, would have seen almost all of this wiped out by their additional heating bills alone, leaving them with just £300 to cover the increased cost of food, transport and motor fuel for an entire year. With the Office for National Statistics reporting UK food prices rising at the fastest rate in over 40 years and motor fuel prices and rail fares still rising, this is an impossible task.

"The government has also said people who didn’t get any Cost of Living Payments could ask their council for help from the household support fund (HSF). But different councils have different HSF rules, so there is no guarantee that people with Parkinson’s in need would be supported.

"And for people with Parkinson’s, being cold is not just a matter of discomfort. Being cold makes symptoms worse and damages both physical and mental health.

"To halt the health harm, the government must get the support needed to people with Parkinson’s, right now."