A “staggering” number of unpaid carers are spending more than double the average working week caring for loved ones living with motor neurone disease, new findings have shown.
Research conducted by the MND Association found that 52 per cent of carers of people with MND provide more than 75 hours of care per week, taking its toll on their own health and wellbeing.
More than half of those surveyed (53 per cent) said their wellbeing had been negatively affected and 35 per cent said their health had been affected. Tiredness (85 per cent) and disturbed sleep (76 per cent) were top areas of concern.
Around 50 per cent of carers described falling into financial hardship as a result of caring for someone with MND, the survey also found.
Worryingly, only a quarter of carers had received a carer’s assessment or were in the process of having one, despite this being a legal entitlement, with 40 per cent being 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 titled Understanding the experiences of unpaid carers of people living with MND.
The findings have prompted the association to launch the Support MND Carers campaign, calling on the Government to improve the level of support for unpaid carers of people living with MND.
“Caring for someone with MND is incredibly difficult because their needs become so complex,” says Jessica, a full-time carer for her husband, who was diagnosed with MND six years ago.
“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 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,” she adds.
Mary, a carer for her older brother who is living with MND, juggles her job as a secondary school teacher with caring responsibilities. She still has not received a carer’s assessment.
“It was difficult to digest and accept the diagnosis,” she says.
“I found it difficult to reorganise my life between being a carer, 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 says the findings paint a stark picture.
“Unpaid carers providing vital care that our underfunded social care system often cannot deliver are struggling to access the help and support they need,” he says.
“They make an enormous and undervalued contribution to the UK’s health and care systems, but 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 MND Association has previously called for more awareness around MND to highlight the devastating consequences of the disease on patients, carers and family members.
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