1. ITV Report

Charity says the cost of living with MND diagnosis is £12,000 a year

Dave and Paula Solomon at their home in Northampton Credit: ITV News Anglia

A new study by a Northampton charity has found that the cost of living with a diagnosis of Motor Neurone Disease is around £12,000 a year.

The MND Association says around £8,000 are struggling to pay for things like home adaptation, specialist equipment and energy bills.

The charity is campaigning to end the financial pressures which it says often overwhelms people with MND and their families.

Dave Solomon was diagnosed with MND nine months before his wedding to Paula who he'd met at a local running club.

Dave and Paula's wedding day Credit: ITV News Anglia

"I was walking back to my car, going across the park and it was empty, I felt so alone, I fell to my knees and broke down in tears."

– Dave Solomon
Dave and Paula at a running event. Credit: Dave and Paula Solomon

"My attitude is I want to help people, whatever it takes I want to help people get through this."

– Dave Solomon

Dave is now unable to run, but still does events in a wheelchair. The couple have spent £30,000 on specialist equipment and adapting their home.

They're now featuring in the MND Association's national poster campaign and want to highlight the mental, physical and financial impact of the condition.

Dave and Paula feature in a national poster campaign Credit: ITV News Anglia

"We've had a lot of help from friends and family, they've fundraised, they've given us money, not everybody's in that position."

– Paula Solomon, Dave's wife

"We found there was a stark difference between the benefits people receive and the actual financial cost of the condition itself. We also found they weren't aware of the benefits that they should be receiving... also things like the NHS Continuing Healthcare which should help support people with their ongoing costs of dealing with MND, people are just not getting it. either because they're not aware of it or the clinical commissioning groups are turning them down."

– Chris James, Motor Neurone Disease Association