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Call to end the stigma of having a brain disorder

The Observer

Jamie Doward

June 26, 2016

 

Sue Ryder charity seeks to raise public awareness and end stigmatisation

High-profile victims such as Billy Connolly, who has Parkinson’s disease, have raised public awareness.

High-profile victims such as Billy Connolly, who has Parkinson’s disease, have raised public awareness. Photograph: Jaimie Gramston/ITV

 

More than three-quarters of people with a neurological disorder believe they are stigmatised because of their condition, despite progress in building awareness of other life-changing illnesses in recent decades. More than a fifth of those with a condition say they have seen someone being bullied or teased because of it.

The findings are revealed in a study for the Sue Ryder charity, which reported over two-thirds of the public – 67% – as saying they had no or very little knowledge of neurological disorders, which result from damage to the brain, spinal column or nerves and are caused by illness or injury. Nearly half – 45% – were not able to name one condition, even though neurological disorders are relatively common.

Each year 600,000 people in the UK are diagnosed with a condition. In many cases these can be life-changing. More than a million people are disabled by a neurological disorder such as multiple sclerosis, epilepsy, motor neurone disease, dementia, Huntington’s and Parkinson’s. But health charities say people with such conditions are largely being ignored by wider society.

“There is a perception that people with neurological conditions aren’t like us,” said Susan Hogston, chief nurse at Sue Ryder.

“The general public just aren’t aware of it; it doesn’t hit their radar. Or, when they are seeing it, they might make excuses for it. People who have got this strange gait often look drunk or might slur their speech, and people make assumptions.”

The position of the national clinical director for neurological conditions in NHS England was abolished in April.

The survey found that 78% of people with a condition believe there is a stigma attached to it. Many say their condition has made them the target for abuse. “People with neurological conditions often report that they have been bullied or had fun made of them,” Hogston said.

She compared the improvements in treating cancer, and helping people understand its impact on their lives, with the outlook for those diagnosed with neurological conditions.

“With cancer we’ve come a long way in having a really clear pathway, but neurological conditions are still a Cinderella condition. You don’t know what the future holds if you’ve been diagnosed with that life-changing aspect.

“You think about your family and the demands on them and your loss of independence – and that’s the key to it, the unknown. It doesn’t have a clear trajectory and the impact is on not just you but your family.”

In recent years well-known figures such as Stephen Hawking, who has amyotrophic lateral sclerosis, a form of motor neurone disease, and Billy Connolly, who has Parkinson’s, have helped to raise the profile of neurological conditions.

But Sue Ryder is calling for a public awareness campaign, the first of its kind, around disorders of this type. “Our study reveals a real lack of awareness and stigma surrounding neurological conditions,” said Paul Osborne, a director at a Sue Ryder neurological centre. “It is vital that we work hard – and work together – to turn this around.”

The charity said that society’s ignorance might be partly down to fear. Asked which potential illness they were most concerned about getting, 45% of the public said a neurological disorder – making it the most feared type of condition in the survey. By comparison, 36% feared cancer the most.

“We understand the public’s fear of getting a neurological condition, as some disorders can have such a major impact on someone’s quality of life, independence and ability to communicate,” Hogston said.

“But we also know that getting a life-limiting neurological disorder is not the end of the road, and quality care and treatment can really help people adapt and live life as fully as possible.”