Call for MND sufferers to access benefits for their lifetime

Yvonne Nee, who lost her father Bill Lavery to MND. Picture: ContributedYvonne Nee, who lost her father Bill Lavery to MND. Picture: Contributed
Yvonne Nee, who lost her father Bill Lavery to MND. Picture: Contributed

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MND Scotland is calling on the Scottish Government to ensure people with Motor Neurone Disease will be able to access certain benefits without assessment for the rest of their lives.

The Scottish Government is currently asking for views about The Future of Social Security in Scotland.

One of the questions they are asking is if some people should be ‘automatically entitled’ to benefits. This could mean that people with certain conditions would receive benefits without having to go through a standard application or assessment.

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MND Scotland has submitted a response to the consultation and today launches its ‘Let’s Get Benefits Right’ campaign, which calls for people with MND to be automatically entitled to certain benefits, and for these awards to be life-long.

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MND is a rapidly progressing terminal illness which stops signals from the brain reaching the muscles.

This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. There is currently no cure or effective treatment, and average life expectancy from diagnosis is just 14 months.

Craig Stockton, Chief Executive of MND Scotland, 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 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, 53, from Hamilton, lost her father, Bill Lavery, to MND in 2014 when he was 78. She said, “I speak as the broken hearted daughter of a great man who was taken from me by this cruel illness. My dad was diagnosed in July 2014 and passed away in September 2014.

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“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.”

Christina McKelvie MSP has expressed her support for the charity’s campaign, saying, “I have seen first-hand the devastating impact MND has on people with the illness, their families and friends.

“I applaud the strong commitment from the Scottish Government to treating people with dignity and respect. It is evident throughout the consultation and I know it will be a central plank of the new system going forward.

“MND Scotland’s ‘Let’s Get Benefits Right’ 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 and I am happy to support their campaign aims.”

MND Scotland is also urging the public to help make a real difference to people with MND, by emailing their MSP to ask them to support their ‘Let’s Get Benefits Right’ campaign.