Report reveals ‘stark picture’ of unpaid carers’ 75 hour working week

A staggering number of unpaid carers are spending more than double the average working week caring for loved ones living with motor neurone disease (MND), new findings reveal.

Research conducted by the MND Association found that 52% of carers of people with MND provide more than 75 hours of care per week. And that’s taking its toll on their own health and well-being.

More than half of those surveyed (53%) said their well-being had been negatively affected, and 35% said their health had been affected. Tiredness (85%) and disturbed sleep (76%) were top areas of concern.

To add to the physical and mental pressures, 50% of carers described falling into financial hardship as a result of caring for someone with MND.

Worryingly, only a quarter (24%) of carers had received a carer’s assessment or were in the process of having one, despite this being a legal entitlement, and 40% were unaware of their right to one.

The MND Association engaged with 245 unpaid carers through a survey, focus groups and interviews between October and December 2021 and has now published its report, Understanding the experiences of unpaid carers of people living with MND.

The findings have prompted the MND Association to launch a campaign – Support MND Carers – which is calling on the Government to improve the level of support for unpaid carers of people living with motor neurone disease (MND).

Jessica is a full-time carer for her husband, who was diagnosed with MND six years ago. She said:

“Caring for someone with MND is incredibly difficult because their needs become so complex. It’s been back-breaking, physically and mentally exhausting, and pushed my body far, far beyond its natural limits. As a result, I am a haggard and tired shell of my former self. I’m not even sure if I’ve had a Carers Assessment and I certainly haven’t benefited from one – Social Services said that there wasn’t much point in doing one as I wouldn’t get anything.

“It is a myth, this kind of thinking that all unpaid carers make a free choice out of love so should forfeit any rights to proper benefits and support. For many, being an unpaid carer is an exhausting necessity, done with love because of the failures of the care system to provide any kind of adequate support structure.”

Mary is a carer for her older brother, Gary, who is living with MND. Mary juggles being a secondary school teacher with caring responsibilities, and still has not received a carer’s assessment.

She said:

“It was difficult to digest and accept the diagnosis. I found it difficult to reorganise my life between being a carer, and a mother and working full-time as a teacher. At one point, I was so overwhelmed that I broke down at work, unable to accept what is happening to my family. My life is controlled by MND. There’s no one coming in to check if there’s anything that’s needed, it’s all on me to do that. I’m running around doing everything. You have to have so much patience. I’m all alone, there’s no one near to take over from me when I need help.”

Alex Massey, Head of Campaigning, Policy and Public Affairs said:

“The findings paint a stark picture of carers under immense pressure, providing vital care that our underfunded social care system often cannot deliver and struggling to access the help and support they need. Unpaid carers make an enormous and undervalued contribution to the UK’s health and care systems, with over half of those who care for people with MND providing 75 hours of care or more per week. Their contribution and their needs are too often ignored. Our research finds that fewer than a quarter of carers of people with MND have ever had their support needs assessed, despite this being a legal right. We are calling on the Government to undertake a full review of carers’ assessments immediately, and to work with local authorities and NHS bodies to understand why carers’ support needs are not being met.”

The launch of the MND Association’s Support MND Carers campaign is taking place this week at the All-Party Parliamentary Group on MND, held at Portcullis House, and is set to be attended by 30 MPs and Peers.