UK Multiple Sclerosis Society Proposes Urgent Revision of the Current Disability Benefits System for MS Patients

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Multiple sclerosis (MS) is a condition which damages parts of neurons resulting in inefficient communication within the nervous system. It is believed that autoimmune disorders and environmental factors, such as infections, can cause MS disease development. There is currently no cure for MS, although the disease can be managed by medications and alternative medicines like relaxation techniques, cannabis and oxygen therapy. Patients with MS can suffer from difficulty in movement/coordination, changes in sensation, depression/unstable mood, muscle weakness/spasms, problems with speech/swallowing, visual problems, fatigue, and bladder/bowel difficulties, among others. These symptoms either occur as episodes of sudden worsening with possible improvement (relapsing-remitting form), or as gradual worsening over time without improvement (progressive form).

From the diagnostic viewpoint, MS is recognized primarily based on signs and symptoms combined with medical imaging and laboratory testing. Early stages of MS can be very difficult to diagnose because signs and symptoms might be confused with other medical conditions; as a consequence, MS disease is generally diagnosed at advanced stages.

Patients with an advanced MS stage suffer not just from the physical and mental problems induced by the disease, but also from financial struggles. MS patients are eligible to claim disability benefits, however, according to a recent report from the Multiple Sclerosis Society in the United Kingdom (UK) assessing 1,780 MS patients, only about a third of the patients apply for the benefits because the current system is inefficient. An UK survey revealed that about 48% of applicants for the Employment Support Allowance and 36% of claimants for the Personal Independence Payment feel that the process is causing their conditions to deteriorate. The reason for this lies primarily in the lack of understanding of the condition, as government workers do not fully understand MS-associated disabilities and fail to use information provided by medical professionals. This lack of understanding ultimately causes additional stress in MS patients that can lead to health deterioration.

According to the Chief Executive of the UK Society, Michelle Mitchell, ”living with MS condition is already enough and should not be made harder by the government system. Lack of understanding of the condition and failure to use information from medical professionals is causing stress or contributing to relapses and deteriorating health. This is counterintuitive to a system designed to support people with disabilities.”

The disability benefits are designed to help people suffering with MS and to enable them to work longer, live richer, have independent family lives and fully participate in society. For that, the government needs to acknowledge the reality of a person living with MS and adapt the benefit system for MS patients.

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In addition, the fact that living with MS often results in extra costs to the household bills [in average an additional weekly cost of £200 (307 US dollars)], patients are forced to cut down on other expenses. In the survey, 9% of the MS patients reported they had reduced necessary hospital appointments or medical treatment/prescriptions, 28% cut down on transportation, 32% on food, and 41% on socializing with family/friends. Rapid solutions must therefore be implemented to ensure that the disability benefits system is working for patients that are in need.

The UK Multiple Sclerosis Society emphasizes that living with MS is not just hard physically and mentally but also expensive financially, and that unfortunately, the current benefit system is not helping this patient population. According to the Society, a call for a change is mandatory in order to force the responsible authorities to take quick and efficient measures concerning the situation of MS patients. With this purpose, a campaign named “MS: Enough: Make welfare make sense” was created in order to gather as much signatures as possible on a petition dedicated to the problem that will be presented to the UK government.

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Malika Ammam received her MS degree from the University of Pierre et Marie CURIE in July 2002 and her PhD from the University of Paris Sud XI, France in September 2005. From 2006 to 2007, she worked as a research fellow at the University of Kansas in collaboration with Pinnacle Technology Inc. (USA). From 2007 to 2010, she was a research associate at KU Leuven, Belgium. From 2010 to 2012, she worked at the University of Ontario Institute of Technology in collaboration with Alcohol Countermeasure Systems Corporation, Canada. She held a prestigious Rosalind Franklin fellowship and resigned in 2015. Now, she is a freelancer.
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