Calls to tackle '˜unacceptable' stigma faced by MS patients

People with multiple sclerosis (MS) often face 'unacceptable' levels of stigma, according to a new survey that found nearly half of patients had been mistakenly accused of being drunk due to difficulties walking.
MS patient Karen Pickering, 34, fell and was lying on the pavement when a lady tutted and stepped over me. Picture: ContributedMS patient Karen Pickering, 34, fell and was lying on the pavement when a lady tutted and stepped over me. Picture: Contributed
MS patient Karen Pickering, 34, fell and was lying on the pavement when a lady tutted and stepped over me. Picture: Contributed

A poll of people living with MS found that 45 per cent of people felt stigmatised because of their symptoms, while nearly three quarters said mistreatment by others made life more difficult.

One patient said people had simply stepped over her after she tripped in the street.

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MS is a lifelong neurological condition where the coating around the nerve fibres is damaged, leading to symptoms such as sight loss and chronic fatigue.

Many patients are being accused of being drunk because they struggle to walk, while 47 per cent said they were accused of exaggerating the extent of their MS because they ‘look so well’.

Another 35 per cent have been accused of wrongly parking in a disabled bay because they did not appear disabled, according to the MS Society survey.

Karen Pickering, of Lochgilphead, Argyll, was diagnosed with relapsing remitting MS eight years ago.

The former carer said: “There was one morning before 9am in the main street, I fell and was lying on the pavement and a lady tutted and stepped over me. That really hurt.

“Having an illness that tries to keep you down and can change who you are is upsetting enough and it takes away so much confidence you once had in yourself. To then have people judging you and ‘kicking you when you’re down’ is completely unacceptable.”

The 34-year-old said she also felt uncomfortable parking in a disabled bay with her blue badge on display, as she does not use a wheelchair.

She said: “Having an illness which can sometimes be invisible is bad enough without the stigma attached to it.”

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More than 11,000 people in Scotland are living with MS, but 76 per cent of patients believe that public awareness is ‘low’ or ‘very low’.

Morna Simpkins, director for MS Society Scotland said: “The results of this survey are completely unacceptable and it’s time to work together to challenge these outdated and stigmatising misconceptions.”

A separate report found shortages of specialist MS nurses in Scotland, while the average Scottish MS nurse had a caseload of 401 patients. The recommended level is around 350 patients.

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