SCOTS with motor neurone disease (MND) must no longer be asked to prove they are dying to claim benefits, a charity says.
The degenerative condition prevents brain signals from reaching the muscles, affecting mobility, speech, eating and even breathing.
More than 450 people in Scotland are currently living with the illness, with around 160 new cases diagnosed every year. The average life expectancy from diagnosis is just 14 months.
But despite a lack of effective treatment or a cure, those with MND are currently subject to health checks to access welfare payments.
While the UK Government operates a fast-track system to improve access to help through personal independence payments (PIP), the country’s leading MND charity says the process is “distressing and demeaning” for claimants, who must prove they are close to death and endure repeat consultations.
The charity MND Scotland is now calling on the Scottish Government to give people with the illness automatic entitlement to benefits to spare them the ordeal of assessment.
The call comes in response to a consultation opened by Holyrood ministers on the future of the country’s social security service, as limited responsibility over this area is devolved.
Social Security Secretary Angela Constance and Social Security Minister Jeane Freeman have already indicated they are willing to draw up a list of conditions that will be exempt from checks. However, this has yet to be determined, pending the results of the consultation.
Launching the charity’s Let’s Get Benefits Right campaign, MND Scotland chief executive Craig 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 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.
“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, whose father Bill Lavery died from MND two years ago, is backing the campaign. The Hamilton woman, who lost her dad two months after his diagnosis, said he was finally awarded his benefits the day before he died.
The 53-year-old said: “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.”
Christina McKelvie MSP, who is backing the campaign, said: “I have seen first-hand the devastating impact MND has on people. 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.
“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.”
A Scottish Government spokesman said: “We are committed to reforming the assessment procedures to ensure they work for service-users and want to stop the ‘revolving door’ of assessments and related stress and anxiety for those with long-term illnesses. We are looking to introduce long-term awards for existing long-term conditions that are unlikely to change, and ensure people get the right level of award as time goes on and a key part of this will be the establishment of a Disability Benefits Commission to provide recommendations and guidance on assessments, conditions and eligibility criteria.”
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