Over 80% of carers forced to use personal savings or retirement funds to cover costs, says new MND Association survey

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Over 80% of carers have been forced to use personal savings or retirement funds to cover caring costs, a new MND Association survey has revealed. 

Family carers enable people with motor neurone disease (MND) to live better for longer and save health and social care systems thousands by addressing needs that would otherwise fall to statutory services. 

The ongoing cost-of-living crisis has increased the financial pressure on households and left many facing financial hardship because of their caring role. Rising costs, falling earnings and benefit shortfalls have left many at breaking point. 

Back in May, the MND Association launched a survey to better understand the challenges and financial issues families face when caring for a loved one with MND.   

Nearly 70% said that caring had a severe impact on their personal financial situation, while 81% have had to use personal savings or retirement funds to cover household costs. Furthermore, 64% of these respondents used over £2,000 in savings in the past year. 

Additionally, the vast majority (94%) of those surveyed believe that the current rate of Carer’s Allowance (£81.90) is insufficient to meet their needs as carers. Finally, over half (54%) of carers said they require at least £200 per week to adequately cover costs 

The full report paints a stark picture of the financial implications of looking after a loved one with MND. As a result, the MND Association is urging the Government to deliver improved support for carers in the Autumn Budget, due to be delivered on 30 October. 

Martyn Barrow from Eccles, Greater Manchester, has been caring for wife Anna since she was diagnosed with MND in 2023 aged just 39. 

The father of three said: “Sometimes I look at it from a government point of view and I think 'I'm saving you money’. I'm a full-time  carer, I do more than 35 hours a week, I’m up during the night.  

“Everything I do and every decision I make now, it's not about us, it's about Anna. Her best interests, what she wants, how she wants things to happen. She's our priority now. Every decision I make is for her. 

“I believe as a carer, if you don't have a voice, you're hindered really. Sometimes there might be a good local authority, but really, they need someone who advocates for them and is really pushing.  

"We are now 70% down on our income from where we were this time last year. But we're still being positive, still making sure we live our life and ultimately make sure the girls have got what they want.” 

Given the rising costs, earning loss and benefit shortfalls, the MND Association believes it is essential the welfare system is reformed. 

Alex Massey, Head of Campaigning, Policy and Public Affairs, said: “The findings of our survey are shocking but not unexpected. Families, carers and people living with and affected by MND are having to make impossible choices when it comes to their finances.  

“We need Government to do more to help vulnerable people in our community. There are steps the new Government can take immediately, including uplifting the rate of Carers Allowance and loosening restrictions on eligibility. 

“That is why we are calling on Chancellor of the Exchequer Rachel Reeves to use the upcoming Autumn Budget to deliver improved support for carers.”