12 June 2024 News

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A survey has found carers of people with motor neurone disease (MND) are at financial breaking point, and many have been forced to take on debt because of their caring role. 

In interim results from the survey, carried out by the MND Association between May and June 2024, 68% of carers described the cost of caring for someone with MND as ‘severe’, with 29% describing it as ‘very severe’.  

70% said they have had to make significant changes to their household budget for essential items, and 82% have used personal savings or retirement funds, such as pensions, to cover these costs. 

Shockingly, almost one quarter (23%) of carers told us they have gone into debt to cover carer-giving costs, with half (55%) of those incurring more than £2,000 of debt in the previous year - or in a previous year when caring.  

The MND Association believes no one should face financial difficulty because of caring. That is why we are calling on the next government to immediately uplift the rate of Carer’s Allowance to a level that reflects the value unpaid carers provide. We are also calling for the strict eligibility requirements to be removed to ensure more carers can access support. 

Low rates of support 

While some carers receive Carer’s Allowance to partly cover expenses incurred, 95% of the carers who responded to our survey told us the rate of £81.90 per week falls far below what is needed to meet the needs of a carer for someone living with MND. 

One carer admitted: “The amount [of Carer’s Allowance] does not cover basic living costs. Without our savings, we would [have] had to sell the house.” 

Our survey found that carers utilise Carer’s Allowance in many ways, including to pay general household bills (63%), disability-related expenses for the person with MND (21%), support for their health and wellbeing (11%), and respite care (4%).  

Restricted eligibility 

Not all MND carers are eligible for the benefit due to its strict criteria. Only half of carers (51%) have applied for Carer’s Allowance and, of those who didn’t, nearly three-quarters (73%) told us it was because they didn’t qualify.  

One person summed up many people’s experiences, saying: “As well as working full-time, and caring full-time, I have had to use my money to travel to appointments, hospitals, pay for cabs, convenience meals.  

“I am also having to pay for my own therapy, and watch my health slipping away as I care, but I’m not entitled to any allowance to cover the additional burden it causes me.”  

The majority (72%) of those who weren’t entitled to Carer’s Allowance said it was because they earned over the weekly earnings threshold (£151), while 4% were ineligible because they shared caring responsibilities with someone who receives Carer’s Allowance.  

One-fifth (20%) said they are already in receipt of their State Pension. Only those with a pension lower than Carer’s Allowance can receive the benefit, and only as a ‘top-up’ to £81.90. As many as 86% of respondents told us they believed the eligibility criteria is unfair. 

Previous research by MND Association found that unpaid MND carers save health and social care systems £185m a year by providing support that would have otherwise have to be met by formal care. This equates to around £37,000 per year, per carer. This figure is almost nine times the amount caregivers could receive through Carer’s Allowance for a year.  

One person who completed the survey said: “The whole system is unfit for purpose and an insult to carers. [Our care is] cheap slave labour done out of love and necessity.” 

Choosing between care and work

Many carers reported being in an impossible position. People under State Pension age are often forced to choose between work and care – deciding whether to work but limit vital time spent with loved ones, or deciding to care but reduce their savings and pension earnings for later life.  

More than a third (35%) have had to give up full-time employment and almost a quarter (23%) have had to reduce their work hours.  

Those over State Pension age and not typically entitled to Carer’s Allowance are potentially being forced to use savings which can’t easily be replaced.

“These results paint a stark picture of the financial reality of MND carers, and the woefully inadequate support offered by government to enable them to continue in their caring role.  

“For too long government have relied on the goodwill of carers to provide vital support to their loved ones – often propping up social care and saving the sector millions of pounds – yet have done the bare minimum to compensate them.    

“The next government must increase Carer’s Allowance as well as the number of carers eligible for the benefit.” 

Tanya Curry, Chief Executive Officer, MND Association 

If you would like to contribute your experiences to the survey, you can do so by clicking here.

MND Association is supporting this year’s Carers Week – ‘Putting Carers on the Map’ – which is highlighting the invaluable contributions of carers across the UK and ensuring their voices are heard loud and clear.  

Photo credit: Matthias Zommer/Pexels