6 August 2024 Association News
Our Chief Executive, Tanya Curry, has written to the Chancellor of the Exchequer, Rachel Reeves MP, to outline our concerns about the recent decision to restrict Winter Fuel Payments to people receiving means-tested benefits, and the impact this will have on people living with motor neurone disease (MND).
Many of the 5,000 people living with MND across the UK already face significant financial hardship, and the decision to remove Winter Fuel Payments for people with MND not on pension credit or other means-tested benefits will only increase their financial insecurity.
People with MND are particularly vulnerable to high energy costs. MND causes significant muscle wastage, reducing the body’s natural insulation and making it much harder to retain heat. This means that many people with MND need to maintain a consistently warmer home environment to manage their condition, which results in increased energy consumption.
Additionally, many rely on a wide range of powered equipment to help manage their conditions and promote health and wellbeing, safety and independence, leading to exceptionally high electricity bills - particularly in winter.
In the letter, Tanya highlighted evidence from our 2023 Through the Roof report into the impact of the cost of living crisis on people with MND, which found that some people with MND face electricity bills of up to £10,000 a year due to their reliance on essential powered equipment in the home.
The costs associated with living with and managing MND are not taken into account by means-testing processes, meaning that this decision risks increased financial hardship for people living with MND.
We are urging the Chancellor to meet with us and members of the MND community so we can explain the impact this decision will have on people with MND. We will continue to work constructively to raise this issue with the government and to seek a solution to protect people living with MND from the impact of this decision.