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15 June 2016

Study finds people are more fearful of getting a neurological disorder than cancer

A survey has found that the general public fear getting a neurological disorder -  such as epilepsy or Parkinson's - more than cancer. 

The survey, commissioned by national hospice and neurological charity Sue Ryder, showed 45 per cent of respondents feared getting a neurological disorder the most, compared with 36 per cent who feared getting cancer the most and just 2 per cent who said coronary heart disease was their greatest fear. 

"Poor quality of life" reason for fear

The major reasons underlying people’s fear of getting a neurological condition were; poor quality of life, loss of independence and the burden it might place on their family and loved ones.  These factors were of more concern to people than the prospect of physical pain or even an accelerated death.   

Another major concern was the social isolation that these disorders might cause.       

The survey was conducted online in March 2016 among a nationally representative sample of 2,000 UK adults.  

Public stigma and bullying

 Responses also revealed worrying levels of public stigma and even bullying towards people with neurological disorders:  

  • 62 per cent of respondents felt that the general public can be scared or embarrassed to talk to people with neurological problems in public – with nearly a third believing these disorders are more stigmatised than any other long term health problem.  
  • 1 in 13 people have witnessed people with neurological conditions being teased or bullied in public.  
  • Over a quarter of respondents thought that ‘nothing much can be done’ for people with neurological disorders   

Little public knowledge of neurological disorders

Worryingly, over two thirds of the public said they have no, or very little, knowledge of neurological disorders with 45 per cent not being able to name a single condition.     

Despite this lack of awareness, 73 per cent of the public agree that we shouldn’t ‘write off’ people with neurological disorders.   

More NHS investment needed

The survey also found that the majority of respondents think that people with neurological disorders can now live more independent lives than 30 years ago, but that more investment in NHS and local authority services and a  national awareness campaign are needed. 

Stephen Hawking inspiration  

Those who thought that awareness had improved cited the role of well-known figures such as Stephen Hawking (who has Amyotrophic Lateral Sclerosis (ALS) a form of motor neurone disease) and Billy Connolly (who has Parkinson’s) as being important in raising the profile of neurological conditions.   

Comment from Sue Ryder

Paul Osborne, Director of a Sue Ryder neurological centre, said:  

“This study reveals a real lack of awareness and stigma surrounding neurological conditions. It is vital that we work hard, and work together, to turn this around.    

"But at the same time the survey also spotlights strong compassion and positivity in the public’s belief that we shouldn’t write off people living with these disorders. It is so important that we build on this and see beyond people’s conditions - focusing on what they can do, not what they can’t.”

Comment from Epilepsy Society

Epilepsy Society’s epilepsy information officer, Stella Pearson said:

“Epilepsy is the most common serious neurological condition, but it is also an umbrella term for many different seizure disorders and that can be complex to understand. Many people with epilepsy lead full independent lives, but epilepsy affects everyone differently. With misunderstanding comes fear, isolation and sometimes, stigma. Public awareness is slowly growing, but we need more. People with epilepsy are helping greatly by sharing their stories, learning more about their own individual epilepsy, and educating others around them. Epilepsy Society’s helpline can help anyone to understand more about epilepsy, or to support those affected by epilepsy.”

 

Epilepsy helpline 

Our confidential helpline is for anyone in the UK affected by epilepsy.

Call: 01494 601 400 (national call rate)
Daytime: Monday, Tuesday, Thursday and Friday 9am - 4pm
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Email: fromthehelpline@epilepsysociety.org.uk

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