Charity says current system is demeaning and distressing for people with the condition
People with motor neuron disease (MND) should be able to access certain benefits without assessment for the rest of their lives, a charity has said.
MND Scotland made the call in its submission to the Scottish Government’s ongoing consultation on the future of social security in Scotland.
Craig Stockton, the charity’s chief executive, said undergoing the benefits applications process is currently a “highly distressing and demeaning process” for people with the condition.
He added that reassessing people “makes no sense”, since there is currently no cure or effective treatment for the condition and average life expectancy from diagnosis is just 14 months.
MND sufferers have enough to deal with, without constant fear of benefit review. Their condition will not improve
Mr Stockton said: “We need to make sure this new social security system treats people with MND with the dignity and respect they deserve.
“Currently, a fast tracking system for benefits like Personal Independence Payment (PIP) exists for people who are terminally ill.
“However, this system requires people with MND to, essentially, confirm their life expectancy is less than six months. This is a highly distressing and demeaning process, as well as being very difficult to definitively prove.
“A system of reassessment is also built into PIP. However, as people with MND can only deteriorate, reassessing them for a benefit they have already qualified for makes no sense.
“We believe that people with MND should be automatically entitled to certain benefits, and that these awards should be life-long. After all, benefits are not a perk of being ill - they are a necessary payment to help people with MND deal with the financial implications that invariably come from having such a disabling medical condition.”
Yvonne Nee, from Hamilton, lost her father, Bill Lavery, to MND in 2014 when he was 78.
She said: “My dad was diagnosed in July 2014 and passed away in September 2014.
“I was involved in applying for benefits for my dad during this short time and he worried about the outcome of the application every day. This was horrible to watch and financially a terrible time as we tried to get dad all he needed.
“MND sufferers have enough to deal with, without constant fear of benefit review. Their condition will not improve.
“The day before he died he was awarded his benefits.”
MND Scotland has now launched a campaign, Let’s Get Benefits Right, urging people to write to their MSP and call for automatic and lifelong benefits for people with the condition.
Christina McKelvie MSP is backing the initiative.
She said: “I have seen first-hand the devastating impact MND has on people with the illness, their families and friends.
“This campaign outlines why giving people with MND some benefits, without assessment, and for the rest of their lives, is the best way to embed the principles of dignity and respect into the new system.”
