‘I had to live off savings’
MARTIN Burnell faced a year-long wait for financial aid after discovering he had motor neurone disease.
He was forced to leave his job and is terminally ill.
But when Martin, 63, applied for benefits, the former support worker was advised to seek employment despite his symptoms and terminal diagnosis in 2017.
His doctor also initially refused to sign the form needed to fasttrack the application. Martin said: “He wouldn’t do it because I didn’t have cancer.
“I said, ‘I’m terminally ill and I’ve been told you can sign this form’. He still wouldn’t. A volunteer from the MND Association phoned and in the end he signed it.”
Martin has a rare form of MND called primary lateral sclerosis causing brain nerves to slowly break down.
The father-of-five, who has 20 grandchildren, still lives independently, but cannot walk without a four-wheeled frame. He struggles with fatigue, slurred speech and muscle weakness.
He said it took 12 months from diagnosis to start getting benefits. Then last month, his money was suddenly stopped.
The Department for Work and Pensions told him he needed to reapply with the form, known as the DS1500.
Martin, of Lowestoft, Suffolk, said: “If I’ve been diagnosed with MND I’m not going to get better. Effectively, I’m on death row.
“I’ve got to take every day as it comes. I went through hell trying to get my benefits. I was living off life savings. What I went through, no one should have to go through.”
Martin’s sister Tina, 52, fought to get benefits before she died from MND last year, four months after diagnosis.