Local people affected by motor neurone disease (MND) recently met with me 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 (MND) Association found families struggling with the financial impact of MND – some are wiping out their 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 MND Association’s Clwyd branch 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.
I want to thank my local constituents for sharing their stories and experiences with me. 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.
The MND Association’s Regional Care Development Advisor for North Wales Kevin Thomas 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 effects 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.”