Support MND Carers campaign launched

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The MND Association is calling for urgent support for people who care for people with MND after a report revealed more than half provide 75 hours of care every single week.

245 unpaid carers shared their experiences in the report Understanding the experiences of unpaid carers of people living with MND. The results painted a stark picture.

  • More than half (53%) said their wellbeing had been negatively affected
  • 35% said their health had been affected
  • 50% described falling into financial hardship as a result of caring for someone with MND
  • Only a quarter (24%) had received a carer’s assessment or were in the process of having one, despite this being a legal entitlement
  • Four in ten were unaware of their right to a carer’s assessment.

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

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

“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. Social Services said their wasn’t much point in doing one [carer’s assessment] as I wouldn’t get anything.

“It is a myth, this 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.”

MPs at Support MND Carers meetingSupport MND Carers was launched at the All-Party Parliamentary Group on MND on Tuesday, attended by MPs and Peers.

Alex Massey, the Association’s Head of Campaigning, Policy and Public Affairs said:

“Unpaid carers make an enormous and undervalued contribution to the UK’s health and care systems. Our research found 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 carer’s assessments immediately, and to work with local authorities and NHS bodies to understand why carers’ support needs are not being met.”

Get involved

Show your support on social media using the hashtag #SupportMNDCarers.

We’ll be sharing more about our campaign in the New Year. To get involved please email us.

Find out more about the Support MND Carers campaign

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262