The Hidden Costs of Living with Motor Neurone Disease

Local people affected by motor neurone disease (MND) recently met with Anne-Marie Trevelyan, MP for Berwick-Upon-Tweed to raise awareness of the immense financial hardship families can face when trying to cope with this rapidly progressing, fatal disease.

Research commissioned by the Motor Neurone Disease Association found families struggling with the financial impact of MND – some are wiping out savings to get support, or going without because they can’t afford it.

The amounts people have to spend can vary hugely but on average, life with MND is costing an extra £12,000 a year, before loss of earnings. Those living with children and those of working age are likely to incur even higher costs.

Members of the Northumberland Group have joined the national MND Costs campaign helping to raise awareness of this issue and are calling for better access to the benefits and financial support people with MND Need.

Anne-Marie Trevelyan said “I am constant in awe of how families cope with the tragedy of a family member with MND. MND is a truly devastating condition affecting families not only emotionally and physically, but financially too.”

“It is vital that we work to ensure people with MND get the right support, in the right place, and at the right time. I will be working alongside Colin and the MNDA to push for the Department for Work and Pensions to get those with diagnoses of long term degenerative or terminal illnesses exempt from ESA reassessments.”

Local MND association volunteer Colin Hardy said “Until now this issue has been largely hidden. It’s really important that all politicians and decision makers understand that life with MND is tough enough, without being pushed into financial hardship. The massive financial impact of MND is having devastating impacts on families who are struggling to cope. We need more people to join the MND Costs campaign to help raise awareness of this issue and make a difference.”

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